Oh friends, I am one hundred percent positive that I’m going to stumble all over myself today as I try to write this post. I have so many thoughts, so many stories, so many questions for you, so many books to talk about, information to both give and receive that I feel like a bit of a hot mess right now. Kensington and I both wanted to let you know that in September she was diagnosed with Celiac disease. As you can imagine, it has become a huge part of our family over the last few months.
We have been talking a lot lately about sharing this with you guys. Of course friends and family have known from the beginning, but now that we’ve had several months of learning to navigate gluten-free living, we thought it was time to let this sweet community know for a few reasons. First, Kensington’s symptoms while common within the Celiac community aren’t your “typical” symptoms and if there is one person out there that this might help, then we’re so happy to do that. The second reason is that we need/want/desire your help too!! We know that many of you live a gluten-free life either because of food allergies, Celiac or other dietary reasons and we are waving the white flag…because we would love new ideas from YOU. So many times over the last four months, I’ve wanted to ask you guys questions or for recommendations, but the time wasn’t right, so now, brace yourselves…I will be asking.
I want to make sure everyone understands before we proceed that I am super thankful that at this time, the only thing we are having to manage right now is gluten. I do not want to make this a bigger deal than it needs to be at all as I know so many of you have kiddos with serious health problems. This is more of an FYI about what we’re doing over here to manage her celiac and to help with her symptoms, plus, how we’re transitioning to a g-free lifestyle at the Shull’s house. We live with another reality over here that is quite sobering, so as a mom to a kiddo with a special need, I understand that everything could be worse (and some things could be better). This really is just to share, encourage, maybe prompt someone to have some tests done, and to get ideas from YOU about how you manage your life without gluten.
I’m going to start from the beginning and probably ramble on a bit.
First, if you don’t know what Celiac disease is, it’s a digestive disorder characterized by the reaction to gluten, the protein found in certain grains. It is hereditary, meaning it’s in your gene pool; chronic, meaning it won’t ever go away; and autoimmune, meaning it causes the body to attack itself. It is not an allergy.
Up until September of this year, I had a vague idea about what it was. Since then, I’ve read two really good books (recommendations by people I love and trust who also live g-free lives). The first one is The Grain Brain which I would describe as very technical and scientific and then the second one is The G Free Diet which is very relatable and easy to read. Both books (along with countless visits with doctors, friends who have Celiac, a friend who is a dietitian and other people living the g-free life) have really educated me on the subject BUT I am determined to learn as much as I can, so please recommend your favorite books too.
I try really hard to be an open book with you guys, but one of the topics that has remained private has been my mother-in-law’s health. She told me I could share this with you today…ever since I’ve known her, she has suffered from an autoimmune disease. We have had our ups and downs with her health over the last 16 years that I’ve been a Shull. One year in particular, she spent about half the year at the Mayo Clinic in Minnesota. It is something that she manages every single day, and when you add that to the fact that Andrew Shull has had an unexplained and yet highly persistent problem for the last 8 years, it’s not a huge surprise that this is genetic. We have tried everything we can think of to nail down exactly what’s plaguing Andrew. He has been to countless doctors, he has undergone both an endoscopy and a colonoscopy and yet, they still can’t figure it out. They think it could be Celiac but because his diet is so clean, they can’t see it like they would your typical person, but that’s always their first assumption. So…grandma plus dad makes Kensington the perfect candidate for something like this.
So, how did we find out?
To me, that part is peculiar.
On Monday, September 9th, Kensington came downstairs with a little red spot on her neck. It looked like hives. She had a test that day at school and even though she had never had hives before, this spot was very small and wasn’t itching or bothering her, so we assumed it was nerves. Honestly, it was so small that I didn’t think any more about it that afternoon. When I picked her up after school that day, the spot had grown enough that I was now super intrigued. It still wasn’t itching, but it was larger. We just happened to be going to the park after school and coincidentally enough, two of the moms there just happen to be RNs. I asked one of them and she then called the other one over. Both of these ladies looked and told me it was poison ivy. We had been out at Smith’s baseball tournament the whole weekend right before, and it was very wooded, so that made sense to all of us. I sent my dad a pic who gets really bad reactions to poison ivy and he said that’s what it was and gave me some home remedies to try.
On Tuesday, September 10th, I walked into Smith’s room to wake both he and Kensington up for school and friends, when she rolled over and looked at me, I gasped out loud. Her face was so swollen that it didn’t even look like her. It freaked me out. I immediately went downstairs and showed Andrew and we decided she needed to go to the ER. I snapped a pic of her (which would be my first tip because countless doctors have looked at it!!) and sent it to Sheaffer and Erika and they both could not believe what she looked like. It wasn’t just that it was red, she was so swollen too. K and I headed to the ER while Andrew took the other kids to school and the ER doctor told us it was a really bad case of poison ivy. He prescribed two medications and told us to treat it and it would get better. So, we did.
On Wednesday, September 11, it was Madeley’s Gotcha Day, and K’s face was still so swollen and red, but we kept using the medication and praying it would subside. It still wasn’t itching though.
On Thursday, September 12, we still weren’t seeing any improvement, so I called our dermatologist and they got us right in. He looked her over and said yeah, a really bad case of poison ivy. He prescribed three more medications (so at this point, she was on five) and said to come back the following week for a follow up.
On Sunday, September 15, sweet Kensington turned 11. Her entire body was swollen and red. From the bottoms of her feet to the tips of her fingers, she was swollen and she was red. We went ahead and had her birthday party, but she was in a really low place because not only wasn’t she making any improvements, she was actually getting worse.
On Monday, September 16, Kensington woke up and the swelling was down quite a bit but she was still very red. I called the doctor and he told me to come in the next day. That night, we were trying to cheer K up, and she asked to go get ice cream. My mom texted me to check on her, and we sent my mom this picture…
…this was one week after it all started.
This was also her on FIVE medications.
Friends, this was a MAJOR improvement to what she looked like just a few days before. See how it’s on her arms too? Her entire body was covered. It did not itch, but it was swollen and she was very red.
(By the way, Kensington wanted you to see what she looked like, and so I asked to pick which picture she wanted to show and this was the one. I never would have posted this without her permission but she said she wanted you to see in case this is happening at your house too. Let me stress though, this was one of her better pictures. I also want to add that I’m so happy that I documented her every day during this because every doctor has looked at these pictures numerous times as it’s helped them diagnose her correctly.)
On Tuesday, September 17, I took Kensington back to the dermatologist and he said that this time, it didn’t look like poison ivy any more but more like a food allergy or even Celiac. K had never had any food allergy issues. We knew she was allergic to pollen, ragweed, gold and cats…but not foods. He asked us about going to the allergist and pediatrician and coincidentally enough, because she just had a birthday, we already had a well visit scheduled that next week.
So, from here, I called the pediatrician and the allergist to try and get her in quickly. The dermatologist gave us really good advice and said not to change her diet because they needed to run tests on her in this condition, so we did not change anything. Later, other doctors would tell me how important that piece of advice was.
Our pediatrician requested lab work be done to determine what kind of allergic reaction Kensington was having. Meanwhile, it was taking a sweet forever to get into the allergist but the rash was thankfully subsiding.
We went back to the dermatologist and he was pleased that the rash was going away but concerned that it was still there, just not as red. He started to think perhaps it had been a virus.
Andrew, Kensington and I went to the allergist appointment. She had no known food allergies.
Here she is on September 21. She’s looking so much better but her skin is still not back to normal.
Here she is on September 28th. Her skin is still not as smooth as it normally is and with a little redness to it.
And then…
…on October 2, Ashby had her 19th of this particular type of procedure.
We got home and of course, that night and the entire next day, Ashby was sick. She was throwing up about every 30 minutes, and I was at that desperate “she needs to stop or else I’m going to take her to the ER” place in life. It was 6:00 PM on October 3, and I had just hung up the phone with my mom saying “yes, she’s still throwing up” when the phone rang again and it was our pediatrician. She was calling because they finally got the correct diagnoses for Kensington…her blood test showed that she had Celiac disease.
I love my pediatrician so much, and I do think I handled it pretty well. But between Ashby throwing up, the doctor telling Andrew he needed shoulder surgery, another doctor telling me Madeley needed a liver biopsy, another doctor telling me that I needed a hysterectomy and now, Kensington has Celiac disease all within FIVE DAYS of each other, I’m not going to lie, the pediatrician asked me if I was crying on the phone. Sigh. It was a lot for one week.
BUT that was the beginning of the new for us over here at the Shull house.
Our pediatrician gave us two great pieces of advice.
#1: Make an appointment with a Gastroenterologist STAT.
#2: Do not change her diet until the GI tells you to change it. They need her diet stable until they finish all of their testing.
So…blah, blah, blah, we went to the GI, she looked at the labs and confirmed Celiac but said the only way to 100% diagnose it is for a small intestine/stomach biopsy so…
…on November 15, we headed to the hospital where K was put under general anesthesia for the first time and had her small intestine and stomach biopsied. Her doctor came out with lots of pics of the inside of K’s stomach and even though they just sent off the labs, she was positive she had Celiac.
From that moment on, they said no more gluten for Kensington.
And friends, her skin changed pretty much over night. DRAMATICALLY!
So, here we are.
In December, I went through our pantry and fridge and donated everything I could that had gluten in it (or threw out what had already been opened). The only items I kept were some frozen Trader Joe’s things that I knew we could finish off over time when Kensington was not at home eating dinner with us.
I’m not going to lie. I have so much more to say. I feel like I have 100 more posts in me, but I’m going to wrap up at least this one.
Some things to save for a later date:
1: We are now a g-free family. If you follow along with my recipes, you’ll notice that I’ve either been posting recipes I made prior to November 15th (but just haven’t published yet) or that they’re gluten-free. Right now, I would say that we’re 95% there at home. My goal is to be 100% gluten free by this summer. Some things (I’m talking to you several items from Trader Joe’s) are still lingering, but we’re going to eliminate all of them. I literally took everything off of my pantry shelves, cleaned the shelves, washed out every jar that I use for things like flour, and replaced it with g-free versions. I am going to need lots of ideas from you g-free people out there because now, I’m only baking and cooking gluten-free items and well, some of it sucks. Sigh. I bet I’ve thrown out at least 8 pans of brownies, 2 cakes, and more cookies than I can count. In my opinion, everything tastes like a protein bar and that grosses me out.
2: K has yet to feel the stomach symptoms that most commonly plagues people with Celiac (like her dad…most likely), but the doctors say that’s coming which is one of the reasons why, we’re tackling the gluten now so that (hopefully!!) she never feels them and/or does more damage to her intestines/stomach.
3: The number one thing doctors have said to us is that we must get the gluten under control to hopefully ward off other autoimmune diseases. The list is long of diseases connected to Celiac. I know my mother-in-law would be the first one to say that we need to keep her healthy to avoid something more serious.
4: It’s all about contamination. Honestly, removing gluten from my meatloaf, easy. Removing gluten cross contamination from everything? Super hard. Also, identifying gluten is super hard. It’s in everything from soy sauce to salad dressings, candy, Play Doh and SO MUCH MORE! Grocery shopping is completely different for me now. I go to multiple stores instead of one, order a lot off of the internet and have to google as I go to make sure we don’t miss gluten in the long list of ingredients in something as simple as Worcestershire sauce.
5: Since K has gone g-free, there is only one instance where she accidentally ate something with gluten in it (a slush!) and immediately broke out again. So, we know that now that she’s cleaned up her diet, the effect of gluten in her system is more immediate.
6: I have had a lot of people comment on my skin lately. A lot. Is it the sunless tanner? Maybe. Is it the fact that I got rid of all of my girly parts? Perhaps. Is it the fact that I don’t really eat gluten at all any more? Probably. I mean…I really think it is.
7: K’s blood work and testing also indicated that she had a second autoimmune disease. The Celiac was easier to diagnose, but this was always in the picture too. On January 10, we finally had another type of specialist rule this out completely. So, we’re very grateful for that.
Whew. Anyone out there still reading all of this? It’s a lot. The main point of sharing this with you today is IF YOU OR YOUR KIDDO ARE HAVING THESE SYMPTOMS, PLEASE HAVE SOMEONE CHECK FOR CELIAC!! I wish I would have known this a long time ago. I don’t want you struggling to find the answers too.
One last thing and then, I’m going to let you go. Throughout all of this, I have been SO PROUD OF KENSINGTON!! She has handled this with so much courage, grace and maturity that her dad and I could not be more proud.
I have so many more things to say.
I’m going to stop now.
Thank you for always being a safe place for me to share. xo
Susan Jeffries says
Wow you have had tough season, but you have handled it with grace. My hubby is a physician and he has been studying functional medicine and nutritional healing. If you ever need some help, I am sure he would chat with you. He uses his God given gift of helping others very well. Prayers for healing and wellness for your sweet family.
Mix and Match Mama says
Thank you, Susan!!
Leigh scarito says
Hi shay- I’m 55 and yes 10 years ago had rash Kept coming on my torso. Docs would say fungus and then just dermatitis and gave me a cream.
So for three
Years I didn’t know and it would come and go. Now only other symptom I had was sometimes I would have some deep burps and then finally for two days I could not stop. I’m
Embarassed writing this but what can ya do haha. Thank u Jesus for the two days because finally a doc assistant asked have u been tested for celiac and so had blood test and voila. So no more
Gluten equals I never never burp anymore!! I never had any huge stomach issues from it besides that. Eating out can be annoying but eating at home is really not hard at all these days with all that’s available. I’m sure u have somewhat seen that already! It’s really really doable!! My three kids have tested negative so far but it hit me late. Obviously you have heard that your son should be tested ASAP too? There are so many snacks and so much out there kids like that she can have! Cheetos, Fritos, popcorn, ice cream the list is endless, my dad was like I’m so sorry u have to deal with this and I’m like dad this is sooooo nothing!! Good luck. 🙂
Leigh scarito says
Ps I’m a Christian too 🙂
Leigh scarito says
One more
Thing- I hate to say this but I would not trust restaurants much. I don’t eat out a lot.
Mickie says
Hi Shay! I live in Euless and have been eating gluten free since 2014. I have never been diagnosed with Celiac but gave up gluten and lost about 30 pounds, my eczema went away and my hair and eye lashes have grown since then.
Eating gluten free is much easier than 5 years ago.
Aldi and Sprouts have affordable g free items.
Walmart has some gluten free cream of mushroom and cream of chicken soups.
Kroger has gluten free French fried onions (I could have green bean casserole again!)
Company cafe and Kozy Kitchen are great gluten free establishments.
I do not recommend taking your family
To Cheesecake Factory, at several locations I’ve ordered the gluten free pasta and it’s been boiled in the same water as the regular pasta. And once, I was given regular pasta(the worst).
If it tastes too good to be gluten it free it probably isn’t is a rule of thumb.
I probably have celiac too but in order to get tested, I have to eat gluten again.
I went all out and ate whatever I wanted in 2018 and I’m still trying to lose weight I gained from it.
But with celiac, make sure restaurant s clean and change everything and let them know that she has celiac and it’s not an allergy or preference (if you go out).
Thankfully, natural foods: beef, chicken, veggies, rice, and fruit are all gluten free.
H-E-B and the sunflower shoppe are good places to shop for gluten free items as well. Always, always read labels.
I’ve modified some of your recipes to make them gluten free for myself. Such as the angel Chicken!
As far as the baked goods. For cornbread if you add cream corn to your recipe it makes it taste soooo much better.
Aldi has a delicious cheddar biscuit mix!
There’s a gluten free country gravy mix I get at Kroger or Albertsons, instead of water, I use milk and add sausage lol,
There’s also gluten free bisquick.
Best of luck, Shay!
You have so many of us as resources as well.
Kim says
Do you follow Danielle Walker on Instagram? Her cookbooks are amazing…and her blog for recipes! Great resource for you as she also has three small kids that eat this way.
Susan says
I was going to suggest Danielle Walker as well. She has several cookbooks. Against All Grain is one of them. Best of luck to your family!
Jill says
I agree with all things Danielle Walker posts on her blog and her cookbooks! I love all of her cookbooks but Celebrations gives you recipes for every holiday which I know is the hardest to figure out so Kensington feels included and not so different. Also if you want quick box mixes check out Simple Mills! I love to make rolls from their Artisan Bread mix, loved their brownie box kit, chocolate cupcake mix and vanilla cake. Also their sea salt crackers which are made with almond flour are fabulous!! I can find the crackers at Costco which is a huge savings for a bigger box!
Chrissy says
1. So glad you were persistent and kept documenting her progress. Always trust your gut!
2. For your husband – GIs can run a camera swallow test that is able to show the areas of the gut they can’t get to when performing an endoscopy / colonoscopy.
3. Immunologist / rheumatologist are super helpful to have on file too. When your gut is acting up and your body isn’t absorbing and or processing nutrients the right way, it can cause several other complications.
Prayers and good luck!
Stephanie Ellis says
Oh I’m so sorry, I also have Celiac and my youngest does also. GF products have come a long way. My favorite flour is Cup 4 Cup it’s a great all purpose blend and I have been able to change out most recipes and turns out wonderful. I have a Instagram essentially _ellis that I have posted a few gf recipes. I just found an amazing homemade gf recipe for bread machine- so good entire family enjoys. I’ll send it. It gets easier and just becomes the new normal. Hang in there!
Nicole Kieson says
I work with my local chiropractor who specializes in nutrition. I would caution everyone to be very leary of GF products, because they contain gums (xanathan gum, cellulose). These gums are very disruptive to our system and cellular makeup. Prediction that future studies will warn against consumption of these gums as our bodies are not able to process and eliminate them. A WHOLE 30 diet or paleo diet of REAL FOODS is the optimal eating plan.
Jessica Otto says
Oh my mama heart ached as I read your post. I immediately wanted to recommend Cup 4 Cup, but I saw this wonderful reader had, so I second that! All of their products (I subscribe to them on Amazon) are incredible, and even my non-GF kids love them. I would also recommend the book “Wheat Belly.” Prayers for you and your sweet, brave girl!
Amy Stouffer says
My brother has had celiac for 9 years now and it feels so natural to us now. The beginning is tough but now its just second nature and we don’t even think twice about making anything Gluten Free. My mom cooks all Gluten Free dinners — GF pasta tastes the same. For baking, my mom has found that adding pudding to the recipes makes it more moist and less grainy/proteiny. Also, a lot of grocery stores have pre made Gluten Free treats that are very tasty. There are lots of frozen foods (fries, chicken tenders, bread, etc.), chips, candy, crackers, etc. that are gluten free and so delicious. I promise this will get easier!!
Mama V says
Susan – are there any books (in general) that your husband would recommend for someone just starting to research functional medicine and nutritional healing?
Katie T. says
Prayers for the whole family! She is lucky to have you for a mama!
Sandi Kellman says
You are one amazing mama! Praying for each of you and Your kids. What a sweet decision to use your platform to inform and encourage others.
I thought of this verse for you Shay
You will keep in perfect peace those whose minds are steadfast because they trust in you Isaiah 26:3
Anna says
I’ve been gf for 4 years now due to Crohn’s disease and some other autoimmune stuff. By far the eat chocolate cake I’ve eaten is the Hershey’s gluten free cake. Google it. I make it. Then add a layer of Nutella and then strawberries. Even people without a problem love it. I also make a choc torte a lot!
Alyssa says
Thank you for sharing this!!! I subscribe to your email updates, but for some reason, many of them go to spam and I never see them. Today, this one popped up in my inbox. Our son woke up last Sunday with a weird rash. He has food/drug/environmental allergies, so rashes aren’t new to us, but this one was strange. It doesn’t look like hives, we’ve ruled out exposure or a virus. We did teledoc since it was Sunday and they were clueless as well (they also mentioned poison ivy, but we’re in IL, and it’s too cold to go out, so that’s not itl, and prescribed prednisone and steroid cream. The spots are still there after finishing this treatment, so now we’ve got to take him in and investigate further. My husband has RA (autoimmune), so he’s also at risk for autoimmune disorders. Something told me to read this this morning, and I’m glad I did. Not sure if it’s related, but something to consider.
Thank you! And best of luck to you and sweet Kensington!
Emily says
Run don’t walk to amazon and buy Sweet Laurel Cookbook. I have never tasted such delicious treats (that are ALL gluten free and lots of other frees) until I found this. I had pretty much decided I’d never like cookies/cake again and then I found this.
Also Against All Grain is a must. She has tons of kid friendly recipes and adult friendly recipes that are delicious. Often they are a little more involved to make but overall not too crazy.
Navigating the beginning of GF life is tough but overtime it becomes second nature… you got this!!!
Praying for Kensington and your family.
Emily says
Oh also King Arthur brand is great!! My parents/extended family has a hard time with my GF needs but now on Christmas everyone has switched to the King Arthur GF pancake mix and we all enjoy it!!!
Gwen says
Check out Brenda Bennett. Blogger, cookbook author. She has created MANY “replacement” recipes that are tasty. Don’t let her blog name (SugarFreeMom.com) deter you. She is also GF. Latest cookbook has lots of family favorites in it. If you combine the research she has already done & your creativity in the kitchen, you are bound to come up with something delicious.
Samantha Wendling says
Yes I second Against All Grain – Danielle Walker!! She is amazing and recipes are so good. I believe she has 4 cookbooks out not. Definitely a must!
Erin says
Yep, Danielle Walker of Against All Grain is the real deal. My husband is GF, and her recipes are winners. I agree with others about eating a whole foods/Whole 30/Paleo style. He eats this way and rarely has issues. If he does, it’s because he’s been cross contaminated in a restaurant. Generally we avoid gluten-free crackers, breads, etc
Deb says
I second the Sweet Laurel cookbook recommendation! I absolutely love to bake. I am not gluten free, but I have friends and family that are either gluten free,dairy free or vegan and this cookbook has amazing recipes for gf and dairy free that everyone loves!
Rosanna says
Hi Shay! I am so sorry that Kensington has to go through this trial. I have an eleven year old daughter that was diagnosed with celiac a little over two years ago after years of rashes and colon discomfort. We had no idea the symptoms were related, but with a gluten-free/diary-free diet, her colon is healing and her rashes aren’t an issue anymore. I know it’s hard and overwhelming and much of it falls on the mother because we are the ones that typically do the most food prep for our families. I feel a lot of pressure to keep my daughter healthy to prevent future autoimmune issues, so I am so thankful that I get to walk this GF journey alongside you. Thank you for starting this Facebook group.
As with many of your readers, I also enjoy the Danielle Walker cookbooks, but I also enjoy the Cook Once, Eat All Week cookbook by Cassie Joy Garcia. It’s a gluten-free cookbook that allows you to prep everything on Sunday to make your weeknights go more smoothly.
Rachel says
My sister in law and 2 of her kiddos, along with several of her sisters all have celiac. I’m going to direct her to your blog. She’s a fabulous resource…..and can make some incredible gluten free cookies! ?
Michelle says
Check out thrive market. You can shop by type and they have a huge gluten free selection. Also trader Joe’s has tons of snack options. Good luck!
Chris says
I was diagnosed with celiac at age 22. I had no signs or symptoms until a gallbladder attack. The best flour I have found is the pillsbury cup go cup. I make all of my regular recipes with it and haven’t found anything that tastes different. Thankfully there are a lot of great products now that are gluten free, Costco has great options as do the grocery stores.
Sophie says
I have had celiac since I was in 8th grade— keep benadryl on hand, the longer she goes the worse her reaction will get & that stuff does the TRICK! The best GF four— cup 4 cup— cooks JUST like regular four. The best cinnamon rolls— https://www.veggiebalance.com/gluten-free-cinnamon-rolls-no-yeast/— use cup 4 cup! The best cookbook— https://www.amazon.com/gp/aw/d/1615190503/ref=tmm_pap_title_0?ie=UTF8&qid=&sr=— it’s called Artisanal Gluten Free Cooking & i use cup 4 cup. The best gluten free bread— https://canyonglutenfree.com/buy-gluten-free-bread-products/Gluten-Free-Mountain-White-Sandwich-Bread.html— they sell it at Target!
Susanne says
I agree… cup 4 cup is THE best flour I’ve found!
C says
I wish I could shout from the roof how many times I can tell everyone to get tested for celiac with certain symptoms ! My symptoms were anxiety and headaches ,, later on stomach issues as well as issues with focusing / learning in school. I am a teacher now and have had 2 students with behavioral issues and both have been diagnosed with celiac ! All because parents pushed for the doctor to test them ( they normally don’t feel the need to test them at such a young age )i always say I was happy to pass on my advice that they should be tested for celiac . It is really a disease no one thinks of and I wish I’d been tested as a young child as I feel it would’ve made things in life easier ! Good luck to K and the family ! It does get easier
Lauren says
I have to share with you,this all happened to my sister at 19 years old. Almost overnight her symptoms appeared and it took months to get a diagnosis, she was in and out of the hospital for a year! In the end gluten, soy, and sunflower seed oil (hiding in everything) had to go! It was a huge adjustment for our family. It took a long time to find the things we all enjoy and dislike so after 3 years of this here’s a few examples… Udis is a safe brand while you learn what you all like and dislike but it does have that protein bar taste we do not like. King Arthur Flour Gluten Fred yellow cake Mix SAVED OUR DESSERT LIVES. For real we make a ton of desserts using this because it tastes so great! We’ve substituted pasta with gluten free pasta, zucchini and cauliflower. Cauliflower pizza crust however is not a favorite. A couple of our local pizza places do bake with gluten free dough and we’ve even bought dough from them to make bread, so ask around and find a good gluten free bakery too. Also this brings me to restaurants, this is still a challenge because the number one thing is cross contamination, some restaurants have great gluten free menus but we’ve had issues with cross contamination. Always asked if it’s cooked separate, and don’t be afraid to request to speak with the chef! Sometimes the chef will even make something special not listed on the menu that turns out delicious! If she’s going out with friends pack food. Even though she may know how to order we found my sister could sometimes get anxious on her own without one of us there and opted to play it safe with whatever she brought. My heart goes out to you all, it’s a tough adjustment but I have no doubt you’ll find what works best for K and all of you! It will get much easier!
Julie Jones says
Wow Shay you have been through the ringer! We read The Grain Brain and then decided to go “mostly” GF. We feel so much better! One of the hidden blessings is that your entire family can benefit from this way of eating!
Susie says
Shay,
I’m a follower and huge fan! I’m a momma of 3 boys in Prosper and a Practitioner! Thank you for this post! You are such a great mom! You hang in over there and I’m praying for an UNEVENTFUL 2020 for you and your family! Xoxo
Susie
LaVon Parker says
2019 was an epic year for you and your lovely family, for sure! Just want you to know the first few months are the hardest; the diligence required regarding gluten can be exhausting. My husband and daughter both endure this affliction; I read anything I can get my hands on, there are several blogs that walk the talk, ‘SImply Gluten Free’ is one I get recipes and info from often. I use ‘ Better Batter’ gluten free flour for almost anything I prepare. Tracy Hill has a couple cook books with all kinds of recipes that are good! Amazon is amazing as far as products, just be sure to read the ingredient list on EVERYTHING! That is where I order the flour. I should have stock in the local health food grocery store. Have moved to almost sugar free also, use ‘Swerve’ due to my husband’s type 2 diabetes which improving dramatically! It is amazing! Also we began following intermittent fasting protocols, which is not anywhere as bad as it sounds. Dr Jung from Canada has lots of info and videos about it.All combined, as made a wonderful difference in our health and energy. May God bless you.
Stacy says
Find me gluten free is a great app to use while traveling or in town to find restaurants other celiacs have been to! We use it a lot for my son!
Keaghan says
Sprouts has great gluten free options and
Elizabethbutter ( she is an insta and blog) has wonderful receipes that can be swapped with gulten free flour and taste amazing for baking and she has some gulten free options.
Also google laura Bush cowboy cookies and if u swap the flour out for gulten free the cookies take the same and are amazing!
Keaghan says
Also Facebook has tons of groups for Celtic or gulten free people that my mom says are helpful ( my sister is gulten free )
Erica says
Amen for functional medicine! My son was diagnosed in Dec. of 2018. The GI did not believe the pain he was having was from Celiac Disease. She told us it was in his head and he just needed to deal with it because it was just celiac. 3 months of screaming and we found a wonderful, compassionate functional practice that had him feeling better in days!!! We are a 100% gf house and are still learning the ways of hidden gluten. One book I cannot live without is ‘Cook Once Eat All Week’ by Cassey Garcia. All gf recipes with dairy free options.
Tarryn says
This post really sat with me all day. I’m so sorry you have had such a hard season. Praying for health for your sweet family. I follow (and LOVE) halfbakedharvest on insta and she just shared a GF brownie recipe that got 5 star reviews. She’s amazing (has been on GMA as well) and I always love her recipes!
Sandy says
He isn’t in the Dallas area, is he?
Jennifer Wilder says
All I can say is thank you for this. I don’t have celiac but this week I got an unexpected blow. was diagnosed with MS and this just reminded me that this is life, we’ve got rondo what we can on our end and let God take care of the rest. I pray your family is all improving and you will have a peace as everything gets sorted ?
Randi Jo Rooks says
Ohhhh Shay!!!!! I’m so overwhelmed FOR you – just picturing that week you had of bombardment. I’m so grateful that you’re so close to the Lord and I know He let you cry in His arms and comforted you. You have such a great support system and such strong attitudes and determination —- so I know you will bless many people by sharing your new GF recipes. The Lord will continue to help you walk all of this out daily. Keep on shining!!! Jesus is sufficient. Love to y’all
Randi Jo says
That was supposed to say….
“So I know you will bless many people through this —- like sharing your journey and how the Lord is working through and sharing your GF recipes!”
Allison says
Wow, what a rough season to be in! Hugs to you all. Can I ask looking back did K have symptoms before she developed the rash? Basically forgive my ignorance but has she always had celiacs (just undiagnosed) or did it just ‘start’ somehow?
Jennie Storts says
Prayers for you all and thank you so much for sharing this part of your life with us! So much to deal with, but there’s a bigger purpose in all of it. Whole30 is an elimination diet meant to identify food sensitivities, but also has helped my husband manage an autoimmune issue. The book It Starts With Food has been a great resource for us. I also love Paleo Running Mama’s blog and recipes. Good luck! You got this!!
Lauren says
I was just about to recommend her! Paleo running momma has been a good resource for me, and her cookbook paleo baking at home comes out in March! It looks awesome!
Beth Swindig says
Hi. I am going to try and keep this comment brief. I have been gluten free for over five years now. I have had numerous health issues and this was the only option to fix them. Sadly, it took multiple hospital trips and lots of pain to get to this point. Please let me know how to best reach out to you. I have learned lots over the years and yes we have mastered how to make baked goods taste amazing! It has not been easy but it is doable. Sending some prayers and hugs from here. It’s a tough road especially in the beginning.
Mix and Match Mama says
Email me!! I would appreciate your tips so much, Beth!!! Thank you for your prayers and hugs too!! mixandmatchmama@yahoo.com
Sarah says
First time commenting on your blog but I have been following for a while! Just wanted to let you know there is an instagram: @acoupleofceliacs where they delicious gluten free recipes!
Emily Aranda says
Hi Shay! I got diagnosed with a gluten intolerance when I was half way through baking and pastry school at the Culinary Institute of America. Allergist and hematologist said over exposure to flour. It’s becoming a thing because of how over processed wheat is now. They are taking all the nutrients out because of how quick they are making it. All about that instant gratification that we need things now and fast. Thomas Keller’s gluten free flour cup for cup is the BEST!! Also one of my chefs at the CIA. Richard Coppedge wrote a few really good books about gluten free baking!!
Halley says
My 7 year old was diagnosed with a Celiac Disease when he was 2. It can been a challenging transition to overhaul how your family eats! Have you found a sandwich bread that Kensington likes? Our son likes Aldi’s GF bread and Schar rolls or baguettes (but it has to be warmed!)
We have experienced a lot of generosity and kindness with my Henry’s diagnosis. From parents sending GF treats to school, close friends keeping GF chicken nuggets in their freezers (just in case my son is visiting and needs a snack), to the food service director for our school district personally making *safe* GF lunches for my son to buy.
I wish you and Kensington all the best!
Jess says
Does your family, aside from K eat gluten at resturants? Sorry that she has to go through this, especially as a kid. I have two members of my family with celiac and I do have to say, things have come along way in the past 10 years food wise! Honestly, I prefer to eat GF when I can because I always feel better. I look forward to seeing some GF recipes!! Good luck in this transition.
Mix and Match Mama says
Right now, Andrew and I are trying really hard to avoid gluten at restaurants. Andrew has a zero gluten policy, but I have been eating it on the occasion that I’m not with Kensington at dinner. What’s been so interesting is how many restaurants have g-free kitchens where things like fries, calamari and other fried goodies are made with g-free breading and such. The goal is to get the entire family g-free 100% of the time and not just at home.
Noelle says
Thank you so much for sharing your family’s story! I would never have guessed celiac disease from her symptoms, that is incredibly helpful to know. If you are looking for some gluten free inspiration, I would totally recommend Danielle walker’s against all grain. I’ve made her recipes, and I’m not even trying to eat gluten/dairy free they’re just that good! Also minimalist baker. I made some amazing gluten free gingerbread from one of their recipes!!
Jennifer Gould says
Yes! Against All Grain is an incredible resource!
Kristin says
Yes, Danielle Walker with Against All Grain is the BEST. Lovely human and wonderful grain free cookbook author. Worth following her on instagram and getting her cookbooks/looking through her blog for recipes!
angela says
what a rollercoaster for your family! thankful you received a clear, quick diagnosis. A family we know has written several cook books to make gluten free delicious and easy for the whole family, even pizza! Check out their site-
http://nogluten-noproblem.com
Ruth says
I also recommend PaleoRunningMomma! Her desserts are the best I’ve found for gluten free options.
Kay says
Hi Shay, I’m so sorry to hear what Kensington and your whole family have been going through. I have been gf (mostly) for a while and have found that the Pillsbury gf flour is a fantastic cup for cup replacement and my family cannot tell the difference when I bake with it. I am replying to this particular comment for a specific reason, though, and that is to encourage you to reconsider having everyone in your family who either does NOT have celiac or who is NOT suspected to have celiac of have a gluten sensitivity go 100% gf. The reason is that if you take gluten completely out of the diet of someone who does not react to it, their GI tracts will stop making the enzymes to digest gluten and they will then develop a reaction to it if they eat it. Our bodies “forget” how to digest foods we stop eating for a long time. Meaning, you will create a problem where one doesn’t exist. This is a documented thing that happens to anyone who completely removes a food from their diet and it is why vegetarians will generally feel awful if they try to add animal products back into their diets. I went gf when I didn’t need to and now gluten has become difficult for me to digest. (I’ve been slowly reintroducing gluten and I’m doing better with it, but it can take time for your body to relearn how to digest a food you removed.) I want to stress that this ONLY applies to family members who currently do not have a problem eating gluten. If you have been eating gluten and feel better not eating it, even if you don’t have Celiac – take it out of your diet. Plenty of people are sensitive to gluten without being allergic to it or having Celiac, so of course, them avoiding gluten makes sense. But unnecessarily removing foods from the diet can make things more difficult in the long run. If your other kids can eat gluten outside the house without any problems, but you restrict their diets outside of the house anyway, they could end up upset and resentful about that. It’s hard enough for a kid with Celiac to go to a birthday party and have to bring their own pizza and cupcake, and it would be even harder for a kid who is fine eating gluten but is being made to do that, anyway. Of course, you should go 100% gf in your house to avoid cross-contamination. Like I said, just wanted to give you a different perspective to weigh in terms of how you handle the other kids outside of the house, IF they do not have a problem with gluten. I am so glad you got a diagnosis for Kensington and it is to your credit that you were so persistent in documenting everything and getting to the bottom of things. You and your family are in my thoughts and prayers as you are working your way through this hard season.
Eve says
Thanks for posting and educating people on the right way to get a diagnosis. So many people self-diagnose or use dr.google and assume they are gluten intolerant. I have no doubt this will help families that read your post! ??
Mix and Match Mama says
Thank you, Eve!!
Haley says
Have you checked out any of Danielle Walker’s recipes or cookbooks? She also has an autoimmune disease that she avoids gluten for, and her recipes are great!
Lisa Miller says
I have two celiac kids!!! The learning curve is steep and then it’s not near as overwhelming. GREAT post!!!! Thankful for a fast diagnosis.
Mix and Match Mama says
Thank you, Lisa!!! I appreciate the encouragement!!
Laura says
I’m so sorry your family has been going through this, Shay. My mama heart broke when I read about the phone call- that is a LOT of medical issues all at once! I’ve never dealt with celiac, but I’m praying for Kensington and your family as you walk this road. I hope lots of others can share some good advice. Much love to you guys.
Mix and Match Mama says
Thank you so much, Laura.
Karleigh Johnson says
Hi Shay! My husband and I are currently doing Whole 30. We are on day 18 and have never felt better. We did it just as a reset but want to implement the changes moving forward. Not sure if you’re familiar with it—but it’s no soy, grains, dairy, added sugar, alcohol, and no preservatives. Obviously, you don’t have to do it to that extent, but all this to say that we have found SO many yummy recipes and have been impressed by the flavor and quality. Please check out 40 Aprons and Defined Dish (another North Texas gal). They will have recipes for you and your family. Another one that has all gluten free recipes is True Roots. She is about to come out with True Comfort (an additional cookbook) and her family doesn’t eat gluten at their house so all of her recipes should be compliant. I really hope this helps. Thank you for sharing yours & K’s story!
Mix and Match Mama says
Thank you so much, Karleigh!!!
Karen says
The Defined Dish (Alex) is awesome, and she just put out a cookbook & is doing a book tour, FYI. I LOVE her recipes! So yummy- a good place to get ideas. I second the recommendation above on this one!
Karen says
And, gosh, praying for you and your family! So much love!!
Leslie S says
Bless you and Kensington for sharing your journey to help others! She is quite a girl! Thank you for being brave and sharing your lives as you feel lead, I’ve been praying for Kensington since you first mentioned she had a health issue. It’s good to see her looking healthy and happy here! Lifted prayers for Andrew, Madeley and Ashby too as y’all navigate this season, and for you mama! XO from South Carolina
Rachel says
My youngest daughter was diagnosed with celiac at 2. She is 10 now. So we have been GF for a while. A few good blogs with great recipes are https://iowagirleats.com/
https://glutenfreeonashoestring.com/
The best GF flour I have found is bobs red mill Paleo flour. (Need to make sure to use Xanthan gum if you use this flour in recipes- it does not have it in it). Be mindful GF foods can often be high in sugar. (Just something to pay attention to on labels). So sorry K has to deal with Celiac. It is manageable but getting used to everything and figuring out the learning curve of GF cooking is tricky.
Ashley says
Iowa Girl Eats has been an AMAZING resource for our family going gluten free!
Sue-Ellen says
Ditto Iowa Girl Eats! I’ve been Gf for about 10 years (I have non-celiac gluten sensitivity) and Kristin has delicious recipes and great recommendations!
Rachel says
Also came her to recommend Iowa Girl Eats!
Sara says
Agreed on Iowa Girl Eats! I wanted to suggest as soon as I read this and see someone else already did! She was a good blogger first who developed celiac after her first child’s birth. Her recipes are hits!
Dana says
Wow…bless your hearts!!! That is a whole lot for a family to deal with in a short amount of time. My sister-in-law (pretty much my best friend) has Celiac’s and it’s been a real learning curve following her for the last 10 years. One hidden thing also is makeup. She has had several ‘attacks’ from makeup and face products with hidden gluten. Her attacks are intense vomiting and diarrhea, plus red, itchy hands and feet. It is a blessing to know for sure with K though, my SIL had doctors think she was crazy and even the biopsies didn’t show she had it, but it’s obvious that she does. We also think another close relative has it (chronic diarrhea and autoimmune disease for years) but she refuses to be tested or go off gluten. One thing that could be helpful (and hopefully you already know this for Ashby) is to join a facebook group for people with Celiac’s. We joined one for a very rare type of dwarfism that our daughter has and I have been amazed with how much we have learned there that even doctors don’t know because they’ve only had one or two patients with it, if any. Another thing I would highly suggest is K always keeping something to eat with her in case there’s nothing ‘clean’ for her. My poor SIL has had to resort to random candy bars for entire Christmas meals because there was nothing available that she could trust! Also having a list of GF restaurants in your area is super helpful. Now that I think of it, I actually have several friends with Celiac’s and they are always sharing the best restaurants and tips with each other! You’re a great mom, Shay. I know you all will get this figured out and help a lot of other people along the way!
Erica Gammon says
Thank you so much for sharing…..prayers for you all and especially Kensington as you all start a new lifestyle journey together ❤️
Melanie Skinner says
Aw! So hard! But you are such a great mom & way to be proactive! The transition to g free may be hard but worth it for everyone in the long run. Sending thoughts your way & looking forward to g free recipes!!!!
Lisa Campbell says
You’re an awesome mama!! Thanks for sharing your and Kensington’s story, I’m sure it will help so many!! Please tell Kensington she is awesome and brave too 🙂
Jill says
Good morning, Shay! Your post tugged at my heart. My 21 year old daughter was diagnosed with Celiac 8 years ago. It is tough but I promise it gets easier. The first time I went grocery shopping after he diagnosis it tool me two hours and I cried in the middle of the store. While my daughter’s syptoms were different, severe stomach pains, I can give you some tips. Luckily in the past few years gluten allergies have becomem ore public and there is way more out there as far as g-free products.
Sara says
Oh my gosh. Thank you so much for sharing that. You’re going to help so many people. I love iowagirleats.com. She has celiac and all of her recipes are gluten free. Although we aren’t gluten free, I use many of her recipes because they’re so delicious. She has a lot of information about celiac and gluten free eating on her site too. Hang in there, you’re a great mom and you’re all going to pull through this!
KD says
I second this recommendation! I love the blog Iowa Girl Eats!
Erika Myhre says
I also highly recommend iowagirleats.com. She has an amazing e-book that is a super helpful guide about gluten free living. Her recipes are easy and delicious too!
Ahna @ Hammers N Hugs says
Awww, Kensington I’m so sorry! It’s hard to undergo such a major lifestyle change at that age (or any!). I am putting on my medical hat for a minute. I tell my patients that with any autoimmune disease inflammation becomes the name of the game. The body gets angry at itself resulting in —> inflammation. In the case of Celiac’s, gluten is the especially offensive agent. As she slowly adjusts to a life without gluten, the landscape needs to widen as you assess other ways to decrease, avoid and then prevent inflammation as there are many factors that contribute. My husband has ankylosing spondylitis which is autoimmune as well, and I can tell you from trending his inflammatory markers (CRP, for example) that these tips make a difference. Exercise – she is young so this is easier. Eliminating artificial and processed foods! Tough one to get started but if I can make one recommendation this is it. Gluten-free AND all-natural. It is a huge overhaul for some pantries, but so worth it.
When I speak at outreaches in our community for our hospital I tell people “If it can give birth, or it is from the earth it’s fair game!” The easiest way to do this is to buy organic in order to eliminate hours of label reading but this is not in everyone’s budget. Lean meat. If eating red meat keep it lean and organic (anyone interested in the research about red meat and inflammation let me know. You can eat it, but keep it lean and organic). Lots of fish! Omega 3 fatty acids are fabulous anti-inflammatory agents! I would also ask her GI if they have found any benefit to starting supplements at her age. Pediatrics are not my specialty! Andrew, however, if he isn’t already, could consider starting Omega 3 fish oil tablets. Zach and I both take them. Sleep! Good sleep is essential to anti-inflammatory living. If anyone is interested in an email with links to articles and specific research I collected on anti-inflammatory living feel free to click on my name here and contact me through my blog (which is a DIY inspiration blog, by the way. Don’t be confused! Haha). It is research I did for my husband and includes info on diet, sleep, exercise, and supplements that best promote anti-inflammatory living, but I am passionate about prevention and “living well” so I would be happy to pass it along! Big hugs to you all, Shay. I know how much you love to cook yummy food, so this has to be frustrating, but hang in there! You will be a GF expert in the kitchen in no time!!
Mix and Match Mama says
Thank you so much for this encouragement!!! I appreciate it more than you know!!
Ahna @ Hammers N Hugs says
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Crissy says
Bless her sweet heart!!! I know that was so very scary and hard to go through!!! Thank you for sharing!!! Our family has lived this life for over fifteen years now with our first adopted daughter. I so relate to everything that you said!! Thankfully over the years so much more research has been done and so many more options available for people who suffer with Celiac or allergies (my daughter has a ton of allergies), but with that said things can get confusing. I don’t want to bombard you with suggestions because I know that can be hard, but a couple of things that have helped us are a very very good probiotic, fermented foods like saurkraut, kombucha just anything with natural probiotics, and just really building up her immune system. Hopefully catching this at an early age will be helpful just hate she and your family had to walk this journey. I will also be praying for your mother-in-law. Many blessings!!
polly P says
You got this, Mama! With a family member who is g-free, I have learned to adapt many recipes. The good news is that you 1) love to cook and 2) understand food chemistry and what “works” in recipes. Also, there are so many products out there that are g-free ingredients (flour, sweetener, oils, etc). Give yourself grace..
Thoughts to you all as you adjust to this “new normal”. Chronic disease is tough on the person with the disease in terms of symptomology, but also the psychological component, especially for a child. I’ll say it again, you got this!
Crissy says
Forgot Against All Grain cookbooks and blog are very helpful.
Brooke Henderson says
Thank you for sharing this and I am so excited to see your gluten free recipes and foods you love. My daughter was diagnosed with celiac at 18 months old with biopsy and labs to confirm it 100%. She is now almost 5. None of us have any autoimmune disorders that we know about so we think she had a bad reaction to an insect bite/antibiotics that triggered her immune system to overreact and then bam celiac. We are blessed that she was diagnosed at such a young age so she doesn’t really know any different and also blessed that these days there are so many gluten free options. I agree that the biggest issue is cross contamination. The hardest thing for us is finding restaurants we can eat at. We recently ate at PF Changs because they generally do well with allergies and their gluten free food tastes just as good but we found out quickly that there must have been some cross contamination when we ate there because our daughter got very sick. Thanks again for sharing and if you have any questions I would be happy to try to help.
Jess says
My best friend’s family is all gluten-free due to Celiac and they love King Arthur Flour brand for baked goods. I know you probably want to do from scratch but it could be a starting point! I always make her their banana bread and I can’t even tell it’s GF.
Robin says
Yes! That’s what I was going to post. My daughter is gluten AND dairy free, and we love the King Arthur gluten free mixes. I order from Amazon. I make a chocolate cake with peanut butter icing that makes her feel like she’s a normal person! haha
Lisa says
Hi Shay…my goodness. Prayers for your family and all you’ve been through. I love that you’ve still lived life, though. It would be so easy to get bogged down in it all. I can’t imagine how hard it’s been on all of you.
I cut gluten out of my diet 5 years ago as I was so sick they thought I had lupus. My knuckles hurt so badly that I couldn’t knock on a door. My tailbone hurt…weird things. I had horrible brain fog and irritability. They were about to put me on fibromyalgia medicine when I friend suggested cutting out gluten. That one change improved my life tremendously. It’s gotten easier over the years. My biggest suggestion is to eat simply for awhile. Steak, sweet potato, vegetable, for instance. Nothing that can have gluten in it.
I have to go as I need to get to school, but I will write more later. Udi’s makes great stuff!
Love to you all…
Laura says
Kensington & Shay, thank you so much for sharing. As a longtime reader I had been wondering and a little worried since you said K had some health issues. I am so grateful you have some answers. I can’t believe we as readers didn’t figure it out with some recipe changes! And Shay you have to add those two books to your monthly book review haha! Even though I don’t have celiac and don’t know anyone with it, I (and I’m sure other readers too) am very up for reading more posts in case it helps you all or others!
Dawn Williamson says
I know there are a billion gluten free sites out there but one in particular I love is Mary’s Whole Life. She is a young mom with Celiac and her recipes are AMAZING! She’s so kind and helpful and I know she would help you navigate the kitchen side of this. She has a cookbook in the works but her website is filled with awesome recipes and tips. She also bought a machine that can identify gluten in foods-I think that helps her with cross-contamination. Sending prayers and love!
Mix and Match Mama says
Thank you so much, Dawn!!
Catie says
I was going to suggest this same person, Mary’s Whole Life!! She keeps up a blog and IG and is coming out with a cookbook. My family is not gluten free but we still use her recipes AT LEAST once a week!
Carly says
Shay, my sister was diagnosed with Celiac in 2000 when literally no one (not even certain doctors) knew what it was. We would travel over an hour to find gluten free food. I am a fountain of knowledge. I could talk about it for literally hours. Please email me!
Mix and Match Mama says
Oh goodness, Carly!!! Thank YOU!
Carly says
Also, you cant bake without xanthan gum. It’s the miracle ingredient. Gluten free dessert is actually my favorite. Bobs Red Mill flour is great
JulieL says
I am a Registered Dietitian working in Canadian hospital. I always recommend to patients to visit Shelly Case’s website as she is the RD guru of celiac disease. Her site has a ton of resources online and a book for purchase. Good luck navigating this big life change. Thinking of you!
http://www.shellycase.com
Mix and Match Mama says
Thank you so much!!
Lauren says
Prayers for your sweet girl! I have been gluten free for about 5 years, and it was very hard at first to navigate what i could and couldn’t eat. Trader Joe’s and Whole Foods will be your new best friends, and restaurants like True Foods will be regulars! If you don’t follow Healthy Gluten Free Family on Instagram, you need to! Her son has celiac and she posts the most amazing recipes and tips! As far as birthday parties go, I have a few friends with children with celiac, and they usually just make sure to bring a GF cupcake or cookie to the parties or to school so that their kids don’t miss out. Bird Bakery has some yummy GF cupcakes! There are some really great GF baked recipes out there, it just takes trial and error finding them! Bob’s Red Mill 1-to-1 baking flour is the perfect GF sub for regular flour in recipes. There is also a brand called Jules that is good. Any recipe with oats can be subbed for GF oats and it tastes the exact same! Anyways, just a few tips! Praying for any easy transition for you guys!
Mix and Match Mama says
Thank you so much!!!!
Ashley says
Thrive Market allows you to select categories while shopping- such as Gluten Free. Makes shopping easy peasy and delivered right to your door.
Mix and Match Mama says
Fantastic!! Looking it up now!!
Beth Knecht says
Oh my goodness! I am so sad and so encouraged by this post! Thank you for being vulnerable and sharing your rough stories with us too! I love that about you! Also, how sweet of Kensington to want to share her story at such a young age! Praying for guidance and health for your family. I can’t imagine how hard the transition is! I’ve tried Whole 30 and thought it was difficult to eat that clean for a limited time. I can only imagine how hard it is to change your complete family’s lifestyle. You always do a knockout job at everything, so you will be an excellent gluten-free baker! Have the best day! ?
Charmaine Ng | Architecture & Lifestyle Blog says
Oh Shay – you’ve handled the past weeks so well! Your family is so brave, despite life’s challenges, you always come out strong. Thanks for sharing this! ❤️✨
Charmaine Ng | Architecture & Lifestyle Blog
http://charmainenyw.com
Dawn says
Sorry you are going through this, but so glad you were able to get some answers. Jillian Harris has family members that have celiac disease. They have some great recipes and info on their insta site A Couple of Celiacs.
Mix and Match Mama says
Thank you so much!!
Anonymous says
I’m so sorry you’re going through all of that. One of our kids is celiac. You’ll need a new toaster for GF toast as an old toaster can never be fully cleaned of crumbs. Also toss any plastic items like spatulas, utensils etc. metal and glass are ok. We were told it can be hard to fully remove from those items and even one crumb can hurt her. Eating out is hard. Restaurants don’t fully understand it. Check every single label as some condiments contain gluten. It’s an adjustment but good to catch now.
Mix and Match Mama says
Thank you for these tips!!!
Allison says
Thank you for this post! My daughter has food allergies and its tough! We did exactly what you did cleaning out our pantry and fridge but I have found my anxiety heightens when we go to restaurants. We have already been to the ER because the waitress failed to tell us it had one of her allergies after we asked. Education is so important for not only us parents but also people in the food industry! I’m looking forward to seeing your recipes 🙂
Christie Asmussen says
I am so happy for you that you found the cause of her suffering. That was a lot to go through for your family. Thank you for sharing. And yes, your skin does look amazing! ❤️
Sarah says
Some foods like Cheerios and Rice Chex are already gluten free, and the box is labeled! Also, air popped popcorn and taco meals would be g-free and family/kid friendly for movie nights or dinners. Using chicken/beef and your own seasoning or getting g-free seasoning with tortilla chips and veggies, salsa, etc!
Erika says
I would have Kensington avoid Cheerios. The oats used are spayed with glyphosate (a pesticide) which can be horrible for people with Celiac. Stick to organic gluten free cereals like Nature’s Path and Cascadian Farm.
Nicole says
Siete tortilla chips and tortillas are so yummy! Grain free! And I also love Simple Mills crackers, just the Sea Salt ones. Yum! We swap all of your pasta recipes out for brown rice pasta and my family can never tell! There are also tons of great bars that are gluten free too! Perfect Bars are filled with superfoods, protein and healthy fat, carbs and taste like DESSERT! Dark chocolate hummus is also yummy too. I don’t have to be, but choose to be pretty much gluten free. Good luck!! I love that your whole family is joining her, that’s awesome!!
Tricia says
Iowa Girl Eats (https://iowagirleats.com/) is a great home-cooked meal resource! She cooks yummy, g-free comfort foods. Sending your family lots of love and prayers! Thank you and Kensington for your honesty with the community!
Andrea Pepe says
Iowa Girl Eats has Celiac so all of her recipes are Gluten free if that helps you a little with substitutions etc. So happy you figured this out!
Hannah says
I read your blog every day but have never commented. I was diagnosed with Celiac disease 6 years ago as a freshman in college. The early days are HARD! It gets so much easier, and you will find recipes and restaurants that are better than their gluten-full equivalents in time. I always say in some ways, my diagnosis was a blessing as it caused me to be more intentional when dining out and cooking. I have traveled throughout Europe (just spent a year living in Prague!) and have had some of the most amazing gluten free foods from some of the warmest, most thoughtful restaurants in the world. It will get easier, K! If you ever need any restaurant recommendations, tried and true gluten free recipes, etc… more than happy to help! And I live in Boston, so next time you visit I have many safe gluten free recommendations for you 🙂
Cindy says
Shay-
First, please thank your sweet daughter and MIL for sharing their story. It takes tremendous courage and generosity to share your true struggles in life in the hope of helping others. And that is exactly what this post will do <3 There's no telling how many families will have a quicker/less scary/less painful road to accurate diagnosis because of your choice to share. Thanks so much and hugs to all y'all!
Ashley Walker says
I’m so sorry you have been dealing with A LOT! Wow! Someone said it best – the learning curve is steep, but once you get the hang of it, you’ll be rocking it! One other tip – most Target and Walgreens brands of medicines are labeled with a gluten free label – I have my cabinet stocked w basic medicines like that that I know I can take! You’re going to bless and help a lot of people by sharing gluten free recipes! Also check out Iowa Girl Eats – celiac food blogger 🙂 Thank you for sharing and educating so many! You’re raising brave daughters!
Lisa says
I had no idea being allergic to gluten could cause a reaction like that. I’m so sorry she has to deal with this – but so awesome that she wants to bring awareness to others as such a young age! No doubt she has amazing things in her future.
Paula says
Wow, Shay! I bet you felt very overwhelmed. I am so sorry. Sweet Kennsington looked pitifil. I have never seen a reaction like that. But, it looks like you have a good handle on it. This may help Andrew’s stomach as well.
I don’t know much about Celiac, but you have me curious. My daughter keeps a weird rash on her face off and on.
Thank you to not only you, but please tell Kensington thank you for being so brave and sharing her journey. She is a beautiful child!
Lori R. says
We are not G free, but I have a friend who has Celiac along with one of her twin daughters. She wrote a book called “Mommy, what is Celiac Disease?” On Amazon. Our friend group has several g free recipes in our arsenal now, favorites being desserts of course.?
Kristin says
As I navigated the world of a Celiac diagnosis a few years ago, something that helped, was replacing all my pots and pans, any wood utensils, and cutting boards. From there, nothing ever touched gluten again! It may seem extreme, but as she becomes more sensitive to gluten, the cross-contamination will become an even bigger issue. Hope this helps!
Erika Slaughter says
Even though it wasn’t a super speedy diagnosis, I’m so glad the doctors figured out what was causing all those problems!! Bless her heart! Those pictures still get me!! And I’m gonna add the other Shull children open my pantry door and are like…GLUTEN!!!
Jackie says
Oh goodness! My daughter was diagnosed with Crohn’s in May and we have had to completely change our food too. I had to literally mourn the way I used to cook!? I know our entire family is eating healthier but it is hard! Especially when you have other kids. Hang in there! You are a good mamma!
Sheaffer Sims says
You’ve got some pretty amazing kids. And you are a pretty amazing mama. This post will help so many people. Love y’all!
Cole says
I don’t normally comment but my heart went out to Kensington and your family. I wanted to recommend a blog called Iowa Girl Eats. She was diagnosed with Celiac Disease and she posts recipes that look delicious. You may want to check it out for meal ideas. I wish your family an easy transition to this new way of life.
*I’m in no way affiliated with the blog*
Vicki Leuck says
You have had a lot on you plate! I am Celiac and have had a gf kitchen for 15 years. Not hard just a big lifestyle change. Oh and by the way… Disney World is fantastic where kids and adults do not feel deprived. And psychologically it is important that K not feel deprived. The fact that your kitchen will be 100 per cent gf is huge. Make sure you buy a new toaster if you haven’t already. Make sure you stock up on Krusteez frozen donuts? and gf pretzels both from Wegmans. Costco has so many gluten free choices. Good luck and Good health. All my best, Vicki Leuck
Mary says
It’s a lot of trial and error on what doesn’t taste like cardboard and what does. The gluten bread is dry and crumbly but there is a two pack at Costco that is decent (don’t have any now so can’t give the brand-purplish packaging). There are decent gluten free frozen pizzas out there but mainly I eat fresh foods, salads, chicken etc. You all will be a lot healthier but it is an adjustment. It sounds like you all are doing great with this! Thanks for sharing this information. Best of luck to all of you as you navigate this new life adjustment.
Sherry Kenney says
I’m very sorry you are dealing with all this! Yes it could be worse, but it’s still a lot. I removed gluten and dairy from my diet three years ago to help heal from an autoimmune disease. Soon it will just be your new normal. You might like ayearofslowcooking.com. She has tons of gluten free crockpot recipes!
KimW says
Ohhhh I can be helpful!
We have been gluten free in our house for 4 years after our son was diagnosed with Celiac Disease (he was not growing, delayed puberty… that’s what led to his diagnosis!)
Book recommendation: Gluten is My Bitch by April Peveteaux (funny but also informative)
Recipe websites I love: Skinnytaste, Iowa Girl Eats, Gluten-Free Palate, What the Fork, Texanerin Baking, gluten-free living
My favorite gluten-free flour blends : Bob’s Red Mill 1:1, Pillsbury (green bag)
My favorite gluten-free cookie recipe EVER (from Alton Brown!): https://www.foodnetwork.com/recipes/alton-brown/the-chewy-gluten-free-recipe-1947962#!
Favorite bread recommendation: FRANZ bread – they carry it at Costco!! It is the closest to “regular” bread we have found.
It gets easier and you WILL find things that taste good!
I have so many other things I could share but the one thing we realized a little too late is that you need ALL new cookie sheets, a new toaster, waffle iron, etc, Anything that has scratches has the potential for gluten to be stuck in there and you risk contamination. The most frustrating part of being g-free has been finding places to eat out that are gluten free AND educated about cross-contamination!
Good luck!
Narci says
We have been praying so much for you and your sweet family! So proud of K!
Laura says
Shay,
I’m so sorry to hear about all of this. It’s a long story of doctors as well, but we finally got my one year old foster son diagnosed with something called Eosinophilic esophagitis. Treatment is food elimination and endoscopes ever three months until we identify the trigger. I have also figured out vegan baking and thrown away lots of things as I learned to cook without dairy and eggs (The first and second foods we eliminated). If the current diet doesn’t work the next item to go is gluten and that seems like an even harder road as dairy is in lots of things but gluten is in EVERYTHING. I wish you all the best as you navigate this!! That being said a friend of mine with severe celiacs loves Chipotle! It is very allergy friendly and if you tell them you have an allergy they will always open a clean package of whatever you want and use a different spoon!
Allison says
Wow! Thank you (and Kensington! And everyone in your family) so much for sharing. I highly recommend the website iowagirleats. She started off as a travel/cooking/fitness blog and now focuses on g-free recipes after she and her kids were diagnosed. Great tips and recipes, highly recommend Kristin’s blog for you.
Amanda Peterson says
I came here to say this!
Karen Krieger says
I will be praying for your sweet family! That is an unbelievable amount of stuff to be going through at one time. Hang in there! My mom always says this too shall pass.
Lesley Heinrich says
I’m so sorry….I’ve had celiac since 1991 when most doctors didn’t know what it was. I was in the 8th grade. I’m 42 years old now, a Registered Dietitian & have had 3 healthy kids! I can honestly say it was such Hell getting the diagnosis (took 2 years, TPN, tube feedings etc) I’ve only accidentally cheated in those years since my diagnosis. I’ve read your blog since your oldest two were babies & have adapted many of your recipes. My MMM-GF bundt cakes are requested often by friends & family. ;)). Feel free to email me if you ever want to talk. I nearly dropped my phone when I saw the title of your post this morning. Hang in there the learning curve is steep & frustrating but soon you won’t have to think – as much. :))
Cathy Chalmers says
Hi Shay! Just a quick cookbook recipe, Against All Grain by Danielle Walker-I believe she also suffers from Celiac’s/has autoimmune disease and she has written some really beautiful recipes. Another one I like is her Celebrations cookbook, lots of yummy things GF. Sending lots of hugs and prayers to you guys!
Kami says
First off I’m so proud Kensington, she’s wanting to help people when going through something hard! ♥️ Try the blog Beaming Baker, try her pumpkin bread & cinnamon bread are phenomenal..this will make you and K feel much better about gluten free. Good luck you’ve got this!
Kate says
These cookies are delicious: https://ourbestbites.com/flourless-peanut-butter-cookies-quick-easy/. As others have mentioned, Iowa Girl Eats is a good resource for gluten free recipes.
Liz McGregor says
This made me teary for you. As a momma of a kid with medical issues I just feel every word of this. Two of my girls are gf as well (not confirmed celiac). I know this is life changing!! It does get easier. Thanks for sharing your journey and hugs to you momma!!
Amy S says
Oh, my heart dropped for you when I saw the blog title today. About a year and a half ago, we got the same diagnosis for our oldest daughter (now 12), and it’s not an easy one! My daughters only symptom was stunted growth. She literally was not growing because of gluten. We have 4 kids, like you, and finding the right balance while keeping everyone healthy and happy is hard. I know you will get tons of supportive comments!! The hardest thing for my daughter was the social aspect. School birthday treats, celebration treats or pizza at birthday parties, etc. She doesn’t like sticking out as different because she is such an introvert!! But for this situation, we keep a stock of treats at school for her to access when these things happen. I bet you already have that taken care of!! The food is very trial and error, but cooking and baking is your wheelhouse, so you’ve got this!! I am excited to buy your next GF cookbook! I LOVE the America’s Test Kitchen GF cookbooks. They do the trial and error for you with the flours, etc. I also like The Paleo Cupboard and The Defined Dish. I am more than happy to provide support to you in any way if you need it! It can be one of those things that people without the disease just do not get, so please don’t hesitate to contact me. Hugs!
Aimee says
Shay, thank you so much for sharing this!! I feel so badly for you all, but in the long run, you will be better off having made this change, for everyone. Gluten should not be used in food, period. It’s just bad for everyone and can ruin a person’s health. I don’t have Celiac, but I am gluten sensitive. I do react to it in different ways than K. It sucks. The best thing you can do is focus on eating mostly fresh vegetables and fruit (ie. Unprocessed foods). It’s jut better for you all. (Real) Food Heals. Excited for your journey, even though it has been hard. Thank you so much for sharing this with everyone!
Kiley Jamieson says
What a tough few months you’ve had! But you are doing the right things!
My moms been Celiac for 19 years and as a result I have been for 5 years now. Growing up we switched to a mostly gluten free diet at hike but I still ate gluten at school and when we were out for dinner. My mom always said, just eat stuff that doesn’t even have gluten like fruits, veggies, meats, yogurt, etc. That way there is a smaller chance of cross contamination. We also made a lot of our food at home! When eating out, mention Celiac and most places get the ‘no cross contamination’ thing! As for the baking, there is a gluten free flour from Whole Foods called Cup 4 Cup. I’m a big baker and found it and it has changed my baking! It acts exactly like a normal flour so you don’t have to change up recipes. Sometimes the baking can get a little dry so I just add a bit more liquid! Hang in there, you are doing great! It does get better and easier!
Bonnie says
For two summers, I worked as a dietitian for a week at camp for kids with chronic illnesses. Each camp had about 120 kids, all with the same condition. It was so neat to see kids come out of their shells, build confidence, and just feel “normal”. This was a part of Paul Newman’s “Hole in the Wall Gang” camps (this camp was in California) and they are all over the US. If she wouldn’t be comfortable with that, they offer family weekends where the whole family is involved.
Just a different perspective as you navigate through this!!
Katie says
It’s so interesting to me to hear how celiac disease presents so differently depending on the person. My daughter was diagnosed at 2.5, but it was a battle with the ped because she didn’t present with typical symptoms. She was Constipated all the time, despite using meds and other means, and didn’t grow at all for over 6 months, had a distended belly, weakness, and was just so unhappy from a little before age 1 to that point. Being a baby she couldn’t communicate that it was because she felt horrible! I believe the celiac was triggered from another medical stress event (she had a UTI that I think flared the disease).
All that to say, I understand the challenges you are going through, but so thankful you had a supportive medical community that diagnosed her so quickly!
Will look forward to more GF options from you. Best of luck with baking….I’ve pretty much given up!
Kristi Mitchell says
If you haven’t already discovered it, cassava flour changed my life when I went gluten free. It’s probably the best wheat flour substitute for baking (quick breads, biscuits, cookies etc)
Jenn says
1. Prayers for you and Kens as you navigate this new lifestyle!
2. How blessed is she to have a mom who is well-versed in the kitchen. Talk about God’s perfect planning!
3. I’ve recently been using recipes from thedefineddish (IG). I’m sure you’ve heard of her. Our family is not intentionally gluten free but some of the recipes she has are and have been absolutely delicious.
Good luck, Mama, sounds like y’all are doing a great job!
Amy Wolfinger says
Thank you and K for sharing!
AIMEE BOYER FEATHER says
P.S. Follow: Iowa Girl Eats. She has Celiac! She is awesome 🙂
Sara Decker-Razos says
I was also going to recommend Iowa Girl Eats. Her recipes are great!
Melissa says
Thanks for sharing your journey. Sending hugs to you and your family.
Casey says
Oh girl. Prayers for your entire sweet family…so much at once. I know you’ll get a million comments but I have been GF for about 5 years. I never tested for celiac i just had so many problems I decided to come off and it changed my life! I went from 7 prescriptions to zero! My son was having SO many GI problems. After going to every dr around I decided to just take him off and see how he did…changed his life! I’ve just sighing the last month taken my daughter off because of skin issues and she cleared up immediately! If you need any brand recommendations I’m happy to help! Finding a good bread for kids to like was the hardest. We settled on Shar! Comes in a yellow bag and is at Costco! Walmart and Kroger have great GF selections as well as Whole Foods of course. Best of luck to you! Everyone will feel so much better. My 11yr old son won’t touch it now it made such a difference.
Amber says
My 14 year old daughter has Celiac, and was diagnosed at 14 months. She has the severe stomach issues with the slightest cross contamination. I feel your pain! The diet and cooking and baking get easier.. There are so many more things now then there used to be! I have a few great baking recipes that even my gluten eating family love. The Cake Doctor has a recipe book dedicated to Gluten Free and it is wonderful! If you ever have questions, there are lots of us out there to help answer! 🙂
Megan says
Hi Shay,
I know you have received lots of good advice from others, but I also wanted to let you know that Danielle Walker has several cookbooks on amazon/kindle with all gluten free recipes. Many of her recipes are also (or can be modified to be) dairy-free, nut-free, etc. She has a blog and Instagram account where she posts videos of her making the recipes. I’m so sorry you’re having to go through this and your family will be in my prayers as you navigate this new journey.
Eloise says
Hey shay I’m gluten free as well and I love this company called “enjoy life”. It has great lunch options and cake mixes. They sell really good cookies and bars. Also have you tried the traderjoes gluten free brownie mix? That really good to!!
Amy S says
P.S. Best GF brownies and pancakes….King Arthur boxed mixes.
Check out Vitacost.com for good prices! Whole Foods can be very expensive.
Donuts are shared a ton at school for birthdays here….we order those straight from Katz Gluten Free
ALWAYS have her carry a bar of some sort in the event that she needs something to eat! My daughter loves Larabars, Protein Z Bars, Luna Bars
Tracy says
Bless her heart! What a sweetie for letting you share this journey with your readers in the hopes of helping others. Thank you both! We believe there may be a history of undiagnosed celiac on my husband’s side (back to his Grandma when nothing was really known about it). Those currently affected cannot be tested because they’re g-free and would have to eat gluten. So they just continue the g-free lifestyle and are doing great! Can’t wait to follow along with your new g-free recipes. I’m always looking for things to fix when family comes to visit.
Kim says
Thank you for your’s and Kensington’s transparency! Praying for you and the family.
Heather Stanton says
Thank you for sharing…I know how hard that was to put all on paper. Your kids are so full of grace! My son has a terrible food dye allergy. Like gluten,,,,it’s everywhere! There is an app my friend uses in the store (she has Celiac) that she scan the bar code of anything new she wants to try and the app lets her know if it is safe. I want to say it has “levels” of safe…like maybe made is a factory that could have cross contamination. I’ll see what the app is. Baking my friend?? I lived in Plano and I know there are fabulous bakeries that make gluten free items. Go talk to them and see what they use and their tricks! Those bakeries have experimented with lots of ingredients and know what works.
Megan says
So sorry she has gone through that. I have spoken to nutritionists who do not recommend completely removing gluten from your diet if you do not have celiac disease though. Did you speak to one about any negative reactions to your other children going gluten free without needing to? Just curious.
Audra says
I’m so glad you were able to get answers and a correct diagnosis. I was diagnosed with celiac and have been gluten free for 5 years now. It gets so much easier as time passes! Praying for y’all as you transition to this lifestyle as a family.
I can’t wait for GF recipes! If you’re not opposed to box mixes for brownies- King Arthur and Krusteaz are the best, in my opinion.
Annie says
I can relate to this story so very well. My son was diagnosed at 12 years of age (a common age given the hormonal growth spurts just starting). I do believe he was a Celiac long before. He too had weird rashes (misdiagnosed as poison oak, ivy etc). His symptoms were atypical as well. Confusion, ‘brain fog’, argued 24/7, in pain, weird stomach pain with vomiting, diarrhea and finally suicidal ideation. He was underweight/height and in bad shape. Our pediatrician said…’hey bear with me and let me do some tests’..and tested for celiac. At that time (10 years ago) there wasn’t alot out there on neurological manifestations and celiac. He tested positive for his antibodies (actually they couldn’t get a proper level because he was so high). Now-our family doesn’t all live gluten free as we were all tested afterwards, but I do not keep any flour in the house at all (because he reacts to it in the air as well). I do have a few suggestions that may help…first watch for dairy (lactose)-many celiacs are also lactose intolerant. 2nd-try pork rinds for breading-its amazing and people always ask me what is on the chicken etc. 3rd. Jules Gluten free flour is amazing! Actually Jules (everything so far is great). Tried it for the first time this Christmas in everything from shortbread to Yorkshire pudding everything turned out really well. 4th. Canyon bakehouse bread-my son says this is the best. Applegate chicken nuggets or tyson (for a quick meal). He loves both. King Arthur is also amazing flour and baked goods. Barilla pasta-so far his favourite and when I make pasta-I never use gluten pasta and no one knows this. All Boar’s head meats are gluten free. I’m sure you’ve managed to figure all of this out. Finally, check on the MTHFR gene. Many celiacs have this. It means they are essentially folate deficient. They cannot process folic acid and need a supplement every day. Good luck and glad that you have a diagnosis…It takes about 3-6 months for the bowels and body to recover.
JL says
So sorry to hear about Kensington’s diagnosis. I was diagnosed 15 years ago and while there are still days when I throw myself a pity party it is generally easy to manage on a daily basis, and I’m grateful for my health. She is so lucky to have you on her side, you got this!! There is a facebook group called Celiac Travel which has amazing recommendations for restaurants while traveling which you should definitely check out, and another one specifically for Disney gluten free(which is one of the easiest places to navigate gluten free) Also, one of my favorite websites for recipes is https://www.faithfullyglutenfree.com She has amazing recipes, I’ve yet to try one that isn’t great (and her whipped shortbread cookie recipe is off the charts 🙂 !!)
Ashley says
I also recommend iowagirleats.com. We are not a gluten free house but still make a lot of her recipes because they are so good!
Chastity says
I am praying for Kensington and your entire family. My son was diagnosed with Alopecia at 18 months old and quite frankly it was devastating. He also contracted and became colonized with Cdiff at 14 months which makes him at a greater risk of Colitis- another autoimmune. Thank you for sharing this journey with us. God bless your family!
Adrienne Miller says
My daughter was diagnosed in May. We only found out because we were doing bloodwork to start growth hormones. Celiac can stunt your growth so they test for that! Get the GF scanner app. It has been a lifesaver for me at the grocery store. You scan the bar code and it will tell you if something is gluten free! I’m so excited to check out your recipes for gluten free food!! So far, the only sandwich bread Alexa likes is Trader Joe’s. I hate how small the slices are so I’m hoping to start making my own. I need to convince my husband we need a bread maker!
Valerie says
Sweet Kensington! So glad that you were able to figure out what it was! I have a friend who has Celiac, and you are right- it is so much more than an allergy. Glad your mother in law is doing better too!
Melisa says
Thank you for sharing ❤️ Iowa Girl Eats has great gluten free recipes that are easy and delicious! iowagirleats.com
Ginny Toman says
Hey Shay I’m so sorry to hear all of this has been going on….my best friend got diagnosed with celiac when we were in college and now me and all my girlfriends are very used to eating gluten free when we are with her or out to eat. Titos vodka is celiac safe which a lot of people don’t know as it is one of the very few that is. Just figured I would share since it is Friday and maybe after all of this you could use a cocktail!
Lauren roberson says
Thank you for sharing! A few gluten free subs I have tried and love are Jovial pasta (Trader Joe’s brown rice is a close second), siete chips, banzai bites cheese bread (Costco), veggies made great muffins and simple mills sea salt crackers. I love dadaeats.com, paleo running momma, Mary’s whole life, Danielle walker and fed & fit. Hope that helps!
Stephanie says
Hi Shay! So sorry for K, my neighbor sends her daughter to a sleep away GF camp in the summer! She loves it and helps her feel not so alone:( it’s called Camp Weekaneatit
Maybe you can check it out?
Prayers
Stephanie
Megan says
Oh goodness you have had a lot going on momma! While we don’t have celiacs disease our sitter does and I didn’t know for over a year! I felt so bad bc she would be at our house for hours and I didn’t have anything for her to eat. I say this bc while I ask all of my sitters now if K starts to babysit others either she needs to take snacks or be ok with you running for over (this is what our sitter did). Glad you all got it figured out.
Janna says
Found out in adulthood I needed to go gluten free and it has been a challenge BUT now it’s a lifestyle. It becomes so much easier to navigate.
Restaurants like Chipotle & Bonefish Grill have been my go-to. Danielle Walker is the BEST source for cookbooks and info. A few favorites on Instagram are Healthy Little Peach, the Real Food Rds (2 dieticians, great recipes) and of course Against All Grain. Good luck!
Debbie Hibbert says
Hard to believe, but be sure to check shampoos and such too! ?
Traci Keel says
I’m so sorry! We are g-free too because of auto-immune diseases- Hashimoto’s, Ulcerative Colitis, and Celiac. I know it’s a LOT to learn and the lifestyle change is overwhelming. One resource that had saved our lives is Danielle Walker’s site Against All Grain- http://against all grain.com. She has 4 cookbooks- ALL 100% g-free. Her website has hundreds of recipes too. Her food is excellent. We have not had a bad meal yet. I cook out of her books most nights. Her newest one is remakes of comfort foods, and they are out of this world. Also, the Celebrations cookbook has every holiday covered, but just the birthday cake recipes are worth the price of the book. We’ve been living this way since 2012- we have three kids and they never knew we changed our lifestyle until they were older. I hope this helps. Feel free to reach out if you have questions, especially about shopping for food- I’m a master at it. ?
Kelly Sites says
I’m so sorry. I’m so thankful you love and serve Jesus. He makes things possible. Great post. I’m sorry for all your family has been through. Your perspective is awesome. It helps with resilience and endurance to keep perspective.
Hang tough.
Erin says
My goodness, this has to be so difficult. You are a great mama to that sweet girl, she’s lucky to have you. Having an autoimmune disease for over 10 years, I can say it definitely gets easier to find your triggers and stay away from things that make your symptoms flare. Also, I’d be a huge supporter of all gluten free recipes that you’d share in the future! I wasn’t able to make many of your old ones because of being gluten free, but they always looked SO good! Hang in there Shay. ❤️
Karen Carter says
I’ve been following your blog and using your cookbooks for several years but almost never comment. This post hit so close to home though. My 6 year old daughter was diagnosed with celiac in September 2019 after chronic belly abs headaches. My 9 year old daughter Abdul myself were diagnosed either celiac as well after her diagnosis. We are still learning and still concerned our 6 year old may have additional autoimmune things going on that we’re trying to figure out. All this to say, I’m right there with you! We’re learning to be a g free household. Also, no pressure, but I look forward to buying the Shay g-free cookbook someday 🙂
Casey says
So sorry you had so much all at once happen. Do you know Erin with @cottonstem on IG? She has two daughters with celiac and shares about it and recipes she makes too. Maybe you can contact her.
Michelle Carnes says
You are such an amazing person. I’m sending the biggest hug I can for all of you.
Megan says
I’m so sorry for your family and Kensington! I wasn’t familiar with Celiac disease until I met my sister-in-law, who was first diagnosed with it at 16. My sister swears by Trade Joe’s gluten-free flower and Brazi Bites (sold at Costco) since she typically can’t eat cheesy bread. Baking desserts that are gluten-free is HARD, but I have tried making a cheesecake once, and I’ve heard it’s one of the easier, tastier things to make. This is a hard learning curve for your family, but I think it’s so great that you’re all trying to be a gluten-free family for K.
Deb says
I’m so sorry for the whole family Wow! I have two cookbooks that might help you No Crumbs Left and anything by Danielle Walker. Good good food and even kids like it! Appreciate your honesty and sharing!
Melissa Terry says
I don’t have any tips or tricks beyond what others are saying but just wanted to comment and say you’re doing great!! When my husband was diagnosed with autoimmune induced type-1 diabetes almost five years ago we totally overhauled our family’s eating which was so much work so I can only imagine it’s been for you to go g-free as a food blogger and cookbook author. I see a g-free book on the horizon for you ? Tell K she is so brave to let you share and we are all glad she’s doing better! Hugs
Sarah says
Sending all the love and prayers to your family as you navigate this new normal.
Sheena Snook says
Thank you for sharing all of this with us! So glad she is handling this like a champ! Wishing you and the family a healthy 2020!
Hydee says
I cannot even imagine that week! You are an amazing mother and K is so so lucky to have you and your family. What a strong, brave, and generous young lady you are raising – clearly traits she gets from her parents! Thank you to both of you for sharing her story. Best wishes on your journey to your new normal!
Miranda says
Iowa girl eats has great recipes and resources for celiac! Praying for your family!
Leigh says
We are a Celiac family here too. Our daughter was diagnoesed at 18 months old (she’s 6 now) and the gastro recommended both parents be tested. Sure enough, I was diagnosed as well. Once you get past the large learning curve, it becomes fairly natural. You have to plan further in advance (I always make sure to bring her own treats to things like Daisies and her own food to birthday parties, etc.) and eating out is definitely more challenging due to cross contamination. I do shop at multiple grocery stores like you mentioned, as unfortunately not all GF products are good so we like different brands from different places. Good luck as you continue your journey!
Michelle G says
So sorry to hear about this! Multiple members of my family have the disease as well. Just wanted to let you know about a GF flour called cup4cup (https://www.cup4cup.com). It is the best!! It really makes the baked goods taste the same as if they were made from regular flour. Would highly recommend it!!
Callie says
Oh your sweet family has been through a lot. My husband has an intolerance to gluten. I have learned a lot from Kristin at Iowa Girl Eats.
Darcy says
Danielle Walker Against all Grains also has an autoimmune condition. She is a great resource and has small children. Check out her website! https://againstallgrain.com/
Jenn says
Hi Shay! I have Hashimoto’s hypothyroidism, which is also an autoimmune disease. My skin was also my biggest issue with my scalp peeling off and itching like crazy, keratosis pilaris (which I had my whole life but didn’t know was connected), joint pain and clicking, brain fog, major hair loss, and extreme fatigue. When I went gluten free all my issues went away. It’s since been suspected I also have Celiac but because I changed my diet before they could test there isn’t a positive answer to that – so it’s great you got that advice before testing! You’ve gotten some great tips but since her skin is affected watch out for hair and skin products like shampoo, lotion, etc. Also, there is a device you can buy that tests food out in restaurants for gluten so you can hopefully avoid being glutened – it’s called Nima. Good luck to you and K! You’ve got this!
Danielle says
@Maryswholelife on Instagram uses a little tool that tests foods for gluten. But I don’t know what it’s called. She has celiac too and posts a lot of yummy recipes! ❤️
Sara says
I can only imagine how scary it must have been for you (and her when she saw a mirror) seeing her face so swollen and red. Bless. She just looks miserable in that ice cream picture. Sending all the best wishes to both of you.
Melissa says
Shay, did your doctor say that usually these rashes would itch? I’ve been experiencing something similar for the last couple of weeks and have an allergy doc appt next week and am VERY itchy. However, I have been eliminating gluten for a few days. Did your doc say not to do this so that gluten appears in the blood work? Thanks!
Mix and Match Mama says
No, they said that typically they do not.
JL says
Also wanted to add…..Shelley Case is a valuable and trusted resource, my most trusted cookbook is Gluten Free Baking Classics by Annalise G Roberts, so many great recipes(fantastic pie crust recipe, and a great flour blend that I sub in all my old recipes) and if you ever need a chocolate cake recipe, this one is AMAZING!!! https://www.agirldefloured.com/2013/04/17/gluten-free-fudge-cake My go to carrot cake (that everyone loves more than the old gluten filled recipes is http://gingerlemongirl.blogspot.com/2008/03/2-everyday-cakes-gluten-free-casein.html Also, ground up rice chex makes a great sub for bread crumbs in meatloaf/hamburgers etc 🙂 Sorry, that was a lot!! If you have any questions, feel free to email me I’m happy to help 🙂
Laurie says
Oh my goodness Shull family!! Will keep you in my prayers as you navigate this new journey.
One quick question…have you had an appointment with a dietician? I would think they would be a huge help for grocery shopping, meal planning & going out to eat.
Hugs for your family!
Laurie
Mix and Match Mama says
We have!! It was very helpful too!
Amy S says
Oh my gosh, I have so much to say. You don’t have to publish all my comments!! 🙂
Get the Find Me Gluten Free app on your phone. It’s helpful if you want or need to eat out!!
Rachel says
I don’t have any advice in regards to celiac disease, but wanted to thank you for sharing. Praying for your family!
Lauren says
Hi Shay,
I have been gluten free for almost 6 years now. I have crohns which is another auto-immune disease and this diet has helped manage it over the years. Look up the brand Simple Mills. Their stuff is the best I have found with clean ingredients. The website also has TONS of great recipes. Thrive Market has tons of great options to purchase. I found myself driving to many stores to get certain things but online helps a lot. Thinking of you and your family as you navigate this new challenge. Feel free to ever reach out. I have a 3 and 5 year old and our whole family is gluten free.
Jamie Brown says
Prayers! So sorry your precious family has been having a rough time.
Nicole says
Thank you for sharing, Shay!! I’m so sorry for all that you’ve been going through. Sending hugs to you all. ? sweet Kensington, I hope you continue to feel better ?
Maya says
I don’t have full-on Celiac disease, but do have some level of gluten-intolerance. It’s definitely a life adjustment, but honestly has made me eat way healthier than I did before. There are tons of GF products out there nowadays which makes it not too bad, but if you can eat plant based that makes it way easier! Cauliflower isn’t that bad, ha! I do still have trouble with baking GF, so I’m excited to see what you come up with dessert wise! Also Pinterest is a LIFE SAVER in terms of finding GF items!!
Allison McGaha says
Thank you for sharing all of this with us…I know it’s not easy to live in the “spotlight” sometimes. I haven’t read the other comments yet but I have 2 recommendations for you. Thrive Market is amazing and totally worth the annual fee. I get all my coconut flour, almond flour, coconut aminos (I.e. gf soy sauce) from them, delivered right to my door. Second, check out Instant Loss (.com). All of Brittany’s recipes are gf because her daughter has an autoimmune condition. Her 2 cookbooks are staples in our house and all my baking comes from those! Blessings to you and your family!
Emily says
Iowa Girl Eats is a good blog and she is gluten free. Can’t remember if it is celiacs or a gluten allergy but she always has great recipes and substitutions.
Emily says
A *food* blog, but it is also “good” 😉
Julie Lienemann says
I will second Iowa Girl Eats! She was diagnosed with Celiac after the birth of her first son, about 6 years ago. All of her recipes are gluten free if you need inspiration or product recommendations!
Kim says
Oh my! What an enormously difficult end to 2019 for you and your family. I was diagnosed with Celiac 12 years ago and do my best to eat GF, but it is not always easy to do. I read through every comment and see that many people have already given you some of the great advise I was thinking of myself. In addition to those sites, books products etc. I am also part of a local GF facebook group that supplies lots of local information regarding restaurants, products and stores that are great for us with Celiac. I am sure that your area has one as well. I have even recently added @traderjoesglutenfree to my instagram feed. I applaud you and your entire family going GF, as this will not be easy to always maintain, but I sure look forward to your recipes having our restrictions in mind going forward.
Amy says
Check out Danielle Walker Against All Grain – both her blog and her cookbooks are amazing. I have a sister with severe IBD and Danielle’s books really broke things down for me. During a particularly bad flare that had been going on a year, I used her cookbook to make my sister “cupcakes” – it is literally a moment I will never forget. Danielle is changing lives and can really guide you on this path.
Mary E Feagley says
I do not have Celiac, but I was diagnosed as a Type 2 diabetic at the end of June, 2019. I can tell you FOR SURE that my skin has gotten so much clearer and less bloated looking since eliminating all sugar, wheat, rice, pasta, etc. from my diet. Sure, I miss some things, but better health (and over 50 pounds gone!) has made all the struggles worth it. Continue to do your research (and I know you will). I think I remember Elisabeth Hasselbeck saying that she is G-free and has a food line and has written a book about it. God bless you all (and Andrew and your mother-in-law) as you seek answers and find yourselves on this new dietary path as a family. I’m sure that many will be blessed from your experiences.
Bayley says
I am so sorry you have had to go through this. Sending prayers your way for the whole family and I’m so thankful Kensington is doing better! I don’t have celiac disease but I have another health issue that makes me eat mostly gluten free. Two AMAZING GF brands are Siete and Simple Mills. They are two of our favorites so I just wanted to share. Siete has everything from tortilla chips, taco shells, tortillas, hot sauces to quesos. Simple Mills has baking mixes, cookies, crackers, pancake/waffle mixes– so much! Their chocolate chip cookies taste just like the Famous Amos ones and they are so good! I find both brands at Whole Foods, HEB, Sprouts and even some at Target. I just wanted to share because these are brands that are solely GF and they actually make things that taste good. Also Cappellos pizzas are GF and they are really good too! I believe Tessemaes brands dressings/marinades are also all GF and we love those as well. I hope you get lots of suggestions from others as well to make things easier for you! I actually use so many of your recipes all the time for dinners and most of the time I have already been making small swaps to make them gf! <3
Brittany says
Shay-
My youngest daughter just turned one yesterday! We learned at four months that she was allergic to gluten, dairy, peanuts, egg whites. The greatest of those being gluten. She was so, so, so broken out. It was painful for her and for us to watch. She is completely gluten free and I am as well. Navigating the foods have been so hard. Having the ability to just open up the pantry to fix a snack or dinner has never been harder. IN IT WITH YOU. I order things online and go to multiple stores myself as I try to fix quality and nutritious meals for my family. I am excited to follow your journey to see what you develop and come up with!
Barbara says
I was diagnosed much later in life (think 60’s) but symptoms were totally different. Mine came about from a random blood test, then endoscopy and colonoscopy. There are some super websites out there to guide you as people are saying. The pasta from Italy is fantastic (they figured this out much sooner than us), but remember most processed foods for Celiacs are high in sugar, so beware. I love the gluten free bagels from Trader Joes, and get them when I travel from Canada. Fantastic bakery in Vancouver, BC called Delish if you are ever there. Don’t get discouraged with your baking, you will throw out a lot of baking that looks great in the pic on the internet but just doesn’t translate at home. I have successfully baked cookies substituting gluten free flour from Two Peas and their Pod that are mainly oats with just a bit of gf flour. Try, try, try and good luck to all of you.
Kate Jaco says
Kensington is so blessed to have such a sweet mama who takes such great care of you. I’m so sorry this has been a really tough season for your family. And also, just because other people might have something “worse” going on, it doesn’t negate your suffering or the fact that celiac is a really difficult, awful thing. God bless yall and continue to give wisdom as you walk this new road.
Valerie Bostwick says
My heart goes out to you and the family.
Please check out Iowa Girl Eats blog for wonderful g-free recipes, she is Celiac and also has kids with some food allergies so her recipes are great, I’ve used some of her desserts to entertain with and had no complaints from non gf guests!!
Whitney Bog says
I was diagnosed with Celiac 5 years ago, and I know it’s definitely not fun. I’m sorry you all are going through this. The best baking cookbooks I’ve found are the America’s Test Kitchen Gluten Free books. They are literal life savers. The recipes call for a lot of work, but the food and desserts actually taste like the real thing and not a gluten free version. Good luck with everything!
Susan V says
My sister has celiac and her family is gluten-free. So while no one in my house has to eat gluten-free, when I cook for her family I have to get creative. I love the blog, Iowa Girl Eats for great gluten-free recipes. She was already a food blogger before she was diagnosed with celiac’s disease during her first pregnancy. She now has three small kiddos and almost all of her recipes are gluten-free. You should check it out for some recipe ideas.
Amy Stouffer says
Also- for fast food options: Chick Fil A and Wendy’s fries are both gluten free as they are cooked in their own fryer! My brother will get the grilled chicken sandwich (with gluten free bun) and fries at Chick Fil A and burger patties and fries at Wendy’s. Jersey Mikes also has gluten free bread for sub sandwiches. P.F. Changs has an awesome Gluten Free menu.
Holly L. says
I had the same sort of thing happen to me when I was in 4th grade. I swelled up and was red but instead of Celiac disease I was diagnosed with Juvenile Rheumatoid Arthritis. The body can do crazy things. Wishing your family all the best as you navigate to the new normal.
Heather Pedersen says
Oh wow…the waiting for answers part is always so hard on a momma’s heart. So glad you were able to get answers for your sweet girl!
Kristen Grell says
Hi Shay!
I am so sorry to hear that about Kensington, but glad you were able to figure it out. I have a friend who has Celiac’s disease and she loves to bake! She has some amazing tip and tricks for making gluten free taste good and they do taste good!! Check her out on Instagram @fancyfreecatering
Rachel says
Check out Iowagirleats.com! So many amazing gluten free recipes that are so easy! Every recipe she posts is gluten-free or has a gluten-free option!
Kathy Lang says
I just wanted to say that Kensington is definitely a strong girl and very courageous to share her story and picture (when she was suffering) with thousands of others in order to possibly help someone else. She’s so young, but the fact that she understands her story, even though it’s uncomfortable to be vulnerable, can help someone is admirable. Praying for the Shull family–and looking forward to seeing how you knock it out of the park on the GF baking Shay, because I know you will find a way!!
Becky says
I have had Celiacs for about 12 years. It was so scary at first, but has now become such a part of my everyday life that I honestly don’t think about it that often. I know that sounds crazy because the beginning of the diagnosis is nonstop checking labels! Just wanted to let you know that it does get better. Also I am so so excited for the gluten free recipes you will post!!!!
Tracy Doubts says
Wow, the Shulls have allot on their plate right now. Prayers for Kensington and your family and thank you so much for sharing!
Julie says
Oh Shay! I just read this with tears in my eyes. What an incredibly hard time for you and your beautiful family. I can’t imagine what you’re going through but I’m so amazed at your dedication and love for your kids. We are not GF at our house, but I wanted to recommend a food website for you! https://www.skinnytaste.com/recipes/gluten-free/. It is Skinnytaste and she has WONDERFUL recipes. In general, her recipes are healthy, easy to prepare and honestly? My ENTIRE family of five will all eat almost any of her recipes. (#miracle). She also has cookbooks by method i.e. slow cooker, sheet pan, insta pot, air fryer, etc. So, the link I gave you was to her gluten free menu. I haven’t tried it but I 100% trust all her recipes and I bet she has some good stuff! In general, her stuff tastes like it’s full fat, etc, but it’s really healthy. Good luck to you and to your family! And thank Kensington for being so brave and sharing her story. I’m sure she is helping so many people out there who never would have known to look for these symptoms! Sending tons of positive vibes your way 🙂
Amy says
We are completely gluten free here due to my husband. Best decision we ever made. I have mastered baking and stuck to king Arthur’s gluten free flour. I’ve tried so many gluten free flours and everything tasted like cardboard or didn’t turn out right. Cross contamination is the hardest. We don’t eat out often due to a restaurant not being able to guarantee it. Hang it there! It is definitely a life change.
April Justice says
A friend of mine has celiac. I wanted to make her a birthday cake one year, but I had no idea how. She told me to use a package of jello pudding in a gf cake mix to help with texture. Betty Crocker has a great gf mix for white and chocolate cake. I used that as a base then added vanilla pudding mix, strawberry jello mix and fresh strawberries. It was delicious!! I 100% CANNOT tell the difference between “regular” cake and the gf cake with pudding mix, and neither could anyone else at the party! It’s was SO GOOD!! I’ve continued to make gf cakes after that, changing flavors with the pudding and jello, and not one person has known they are gf. Prayers for sweet Kensington and all your precious family!!
Lois Hilty says
What size boxes of jello & pudding did you use? Please answer to my email lhilty1@comcast.net since I’ll not check here. Thank you very much. Your “recipe” sounds good!
Meaghan says
Follow acoupleofceliacs on Instagram and check out their blog. They have some delicious recipes! So sorry to hear that poor K is going through this. You’re doing such an amazing job raising your tiny humans!
Kelly says
Oh bless sweet Kensington! I have Celiac as well and was diagnosed 7 years ago and cutting out gluten changed my life! GF food is getting WAY better every single year. I’ve tried it all. Bobs red mill 1 to 1 baking flour is really good. King Arthur flour makes the best GF pancakes and I think Schar white bread is the closest to regular bread you can find. Eating at restaurants can be tricky but as long as you know what to ask about it’s usually ok. Iowa Girl Eats is a great resource for recipes, she has celiac as well and is a good blogger so she has lots of tips! I’m so glad Kensington is feeling better!!
Kelly says
Food blogger. Not good blogger. 😉
Connie says
I am so sorry to hear about your family’s health issues. As a retired elementary school principal, I can tell you that there are lots of children with gluten issues. The good news is your family has YOU, a Mom that is an expert in the kitchen! We all know, in time, you will create a million new, delicious GF recipes. I try not to eat gluten because of the inflammation it causes, so I will eagerly await for your new GF cookbooks! There are a lot of great books out there. My first GF book was Wheat Belly, written by Dr. Davis, who discusses the problems with wheat and other grains. Grain Brain was also great. Clean Gut by Dr. Munger is very informative, too. You will learn and adapt quickly, and your family is so blessed to have you.
Danielle says
I thought I recognized a gluten free bun on here the other day! I was diagnosed with Celiac at 24 (so nearly 6 years ago) and the learning curve is steep, but it sounds like you’re well on your way! I always say that its a blessing that I don’t have to take any medications to manage my autoimmune disease, just eat the correct diet. If I try to frame it like that, and look at all I CAN still have (cheese! Ice cream! chips! the list goes on…) then I’m less likely to feel sorry for myself. Glad K has a diagnosis and you all have a plan moving forward. Looking forward to you sharing more tips and recipes! You got this, Kensington!
Katie Boyle says
I have an autoimmune disease (fibromyalgia) and after 10+ years on medications and pursuing treatments from traditional doctors, I turned to nutritional therapy and functional medicine. I have been mostly symptom free for 5+ years (including thru 2 pregnancies which can trigger autoimmune conditions) by following a paleo/ancestral diet, avoiding all grains, etc. I would be happy to chat more about how to find medical practitioners who actually understand how our bodies work holistically, from a genetic level which can be key to managing these kind of conditions and might help Andrew and your MIL too! Good luck mama!
Caroline says
Tasty as fit on Instagram is a wonderful resource for plant based/gluten free recipes! She is local for us and has a storefront but posts all her recipes on her website and has an awesome Instagram account! Hope that is helpful to you and your precious family! xo
Kimberly Penson says
I have followed you for many years. Thank you for sharing. You and Sweet K are going to help so many families. I’ll say a prayer for you today.
Tracey Cobb says
Thank you for your post. My sweet Sloane was diagnosed with Celiac at two. It was an especially hard and scary time for our family. She is my oldest and I felt helpless, as no one in our families had been diagnosed! She is seven and a half today and thriving! She has become a wonderful and brave advocate for herself. While I’m no expert, I’ve learned A LOT. Eating out and birthday parties can be tough. But we’ve found tried and true restaurants and treats! (We live in Keller, and I’d be happy to share those with you!) The Celiac journey, while not easy, has been an enormous blessing. It’s certainly made me more empathetic to other families with food restrictions. We are grateful for Sloane’s early diagnosis, as you know, it can take YEARS to be diagnosed. I will keep y’all in my prayers as you navigate this new life. Again, thank you for sharing!
Julie says
I posted about Skinnytaste but forgot one other tip! Amazon Prime grocery shopping all the way. You can type in what you’re looking for, read the ingredients (so key for you now!) and then add to your cart. Then, you schedule grocery delivery at your door for any window you’d like for free. The fruit and vegetables are really high quality (bc of Whole Foods partnership). Anyway, I feel like it would save you time as you have to go to many more stores now. Hope that helps! It has been life changing for me and cut out hours from my weekend that used to be devoted to grocery shopping.
Julie Graves says
Hang in there! I come from a family of celiac disease, allergies and intolerances (dairy, nuts, gluten) and it’s not easy. My daughter didn’t sleep more than an hour at a time until she was one, when I removed all gluten and she has slept through the night ever since. It’s hard to find recipes that taste good, but with trial and error, you will have a great repertoire. In my experience, gluten free oats are great, and quinoa, corn. I found this great quinoa cake (you can turn them into cupcakes) that non-gluten people love! https://www.joyoushealth.com/341-recipe-flourless-gluten-free-dark-chocolate-cake
Lois Johnson says
Sounds like people have given you lots of good advice. You’ve got this! Your head is spinning nd are looking for how to adjust to a new normal. My daughter was diagnosed with celiac at 3 and is now 12. We used to say to her “gluten free is the way to be” we didn’t want her to feel less than someone who could eat gluten. A couple of things to add:
1) I got rid of any kitchen appliance that had gluten in it that couldn’t be cleaned thoroughly: toaster, waffle maker, cookie press, etc
2) not all GF bread is created equal. Franz is okay, but hands down favorite is the Canyon bake house breads. There aren’t as weird spongy as others and doesn’t fall apart. Nice flavor too.
3) baking by weights is best when you find a recipe. Each flour has a different weight so you can’t swap equally one GF flour for another with a different weight
4) teriyaki sauce was one of the most challenging things to find GF. Found one at sprouts
5) I have a good form letter to give to teachers to explain it to them. I generally send it before the school year starts so they are blindsided.
Happy to answer any questions. We’ve been GF for awhile. I’m with you in a sense that you can always learn something new!
Jennifer Edwards says
I am so sorry that you and your family are going through this but it sounds like you are all handling it with such grace!
I have been GF for 7 years now and I could give you a million different recommendations for snacks, baking, and more… Simple Mills is a great brand that makes GF crackers, baking mixes, cookies, and more. But the BEST thing I can introduce you to is Otto’s Naturals’s Cassava Flour. It is basically a 1:1 sub for wheat flour and it’s totally GF and produced in an allergen free facility! It is such a game changer and I promise you will love it! And there are so many recipes online using it, too!
Natalie Clark says
Thank you for sharing this. I will be sharing with a friend immediately who has had some symptoms that are similar. Also, I know this might be too personal, so don’t feel like you need to share, but does Andrew just struggle with stomach pain? I have had some issues in that area that seem to go away and come back, go away and come back.
Love reading your posts and getting to know your kids more! Kensington is so stinking sweet!
Bethany says
Wow! I learned so much from today’s post. Thank you for sharing. And thank you Kensington for being brave enough to share. Hang in there, mama! xo
Michelle says
I also recommend Iowa Girl Eats. So many delicious recipes (and we don’t eat gluten free). Good luck <3
Amy Divita says
Thank you for your post, SO many prayers for Kensington and your family!
Lee Ann says
I’m so sorry! But so thankful you have your answers. I was diagnosed 15 years ago- when there wasn’t a gluten free item in a store. Eating out is still the hardest. Contamination is everywhere.
Again- so thankful you know and can help her.
Anna Twedt says
Shay, you bring so much joy to this community. I’m so sorry about everything happening at once, and I would be an utter mess if I woke my kid up and saw them that way. I’m so sorry! My mom has been gluten free for a few years now. We just found @CleanMealMondays Instagram and have been trying her recipes for about a month now. She’s great! She has breadsticks and cinnamon rolls that are on our list to try next and I’m very hopeful. Skinnytaste.com has black bean brownies that I made yesterday that were so good, and not like any I’ve tried so far! Hope this helps. I’m always so thankful for your blog and how much help you bring to this community! ~Anna
Barbara Parnell says
I’m sorry to hear about all this. I hope that everyone’s health issues are under control and you all start feeling better. Fortunately, we live in a time where there are so many GF options available. Good luck with everything.
Kristi says
Thank you so much for sharing this! My daughter has some chronic unexplained symptoms and this is just the reminder I need to proceed with testing. I was planning to try to eliminate one food group at a time but I appreciate your advice to NOT eliminate it until after the testing. I was eating paleo for awhile and I really enjoyed The recipes on paleomg. They tasted like real food, just with gf substitutions. And, a friend who’s son was recently diagnosed found a camp for kids with celiac. She said it is the best week of his summer connecting with friends who are also gf and knowing that everything at the camp is safe. Good luck and thank you again!
Cynthia Shomaker says
Thankful for a diagnosis so you have a plan of action! I’ve been gluten free for 6 years due to sudden allergies. My best discovery is to grind organic, gluten free oats in a coffee grinder and use as base for a type of bread or dessert. I add avocado oil and Himalayan salt, then enough water to make consistency I want. Thicker for pizza crust orflat bread, thinner for cracker. For cookie, mix ground oats, butter, stevia, and enough water to form cookie dough texture. Add cinnamon, or break up Lily’s stevia sweetened chocolate bars. So good and I never feel deprived. Hugs and prayers for you all!!! I sense a new cookbook may be in the future ❤️??
Karly Roush says
Prayers for you all as you navigate this! Tell K she was so brave to want to share and help! You’ve got this momma!
Valerie Allen says
Shay, I wanted to add that Johnsonville pork foods are almost all gf even though they may not be labeled as such. Just avoid the meatballs, beer brats and the Teriyaki flame grilled chicken according to their website.
Alyssa says
I’ve eaten a GF diet for over 5 years and now eat a Paleo diet to get away from dairy. I have never been steered wrong by any of Paleo Running Momma’s recipes; her baked goods are divine! Be sure to check shampoos, face washes, and cosmetics which tend to sneak in gluten – even mascara. I pray that Kensington and your family continue to transition well to this new lifestyle.
Monica says
We are a GF household – trust me – it DOES get easier! We have found that breads are the thing we miss most so we use frozen Glutino English muffins (they are better than regular – yeah) and Lidl has their own brand of GF bread that’s better than any sourdough bread we’ve had!
Hang in there – we look forward to your recipes!
And, thank you for sharing!
Skimama says
I was diagnosed with celiac 10 years ago. The first 3 months were the hardest for me and then it got much easier. So hang in there!
You have gotten so many good tips already but you seriously have to buy Cup 4 Cup flour. Williams Sonoma has it, Amazon and some grocery stores as well. I’ve tried every GF flour and this one is fantastic. People can’t tell they are eating GF and we use it for everything from gravy to baked goods. All of the other flours tend to be grainy and crumbly and just taste weird. You are welcome to email me and I’m happy to give a list of all of my favorite GF foods and tips.
Melissa says
All the love to sweet K! She is so brave ❤️
Rachel says
Thank you for sharing and being so transparent about what’s going on. I know Kensington’s story will help so many. As a fellow autoimmune girl, I totally get the shock and anxiety that comes with a diagnosis like this, but thank God they were able to diagnose her relatively quickly so she didn’t suffer for years without having an answer. While I’m not G-free, I know grocery stores and restaurants are really increasing the amount of g-free options for people and my friend with celiac made me brownies the other day and they tasted just like the real thing! TJ has a lot of great G-free options too 🙂
Erin says
I cook GF on the reg for my husband….it’s overwhelming at first, but then gets sooo much easier. And I have noticed that over the years soooo many things are now GF. Like everyday salad dressings (wish bone italion for ex) are GF. I use McCormicks GF taco seasoning. Corn tortillias or corn shells. And ALWAYS buy blocks of cheese & shred it. Bagged cheese is NOT GF. That gross powder they put on it isn’t GF. Pillsburys GF pizza crust is good! And a lot of spaghetti sauce are GF. I was at TJ’s yesterday noticing NONE of their sauces are GF which is annoying. I am sorry she is dealing w/ this, but it will be ok! Oh and they make GF cream of ckn & crm of mush soups! And Weber has the BEST GF seasonings!!!
Kendra says
I had to go g-free several years ago. It was overwhelming at first, but it does get easier. Your grocery store trips won’t always be so hard. You find your brands, favorite recipes, etc. FYI- Aldi is actually one of the best for labeling their products. Hang in there! I’ll actually be looking forward to g- free recipes from you!
Marsha says
So sorry y’all have been through the wringer, talk about when it rains, it pours. Thankfully, you have a diagnosis now, which from experience, I know is a relief and a big OMG moment. Actually, 30% of the population has the gene mutation that causes celiac and they are trying to figure out what causes it to “turn on”. Food additives and processed foods has found to be the likely culprit. And why it is more common now than 30 years ago. We have stopped eating all processed food, which is so much more work, but so many of the GF products on the shelf are so processed and bad for you. I remember you did a post about your friend who had a son with a gluten allergy and I cringed when I saw all the processed food that she used as a substitute. It will make your entire family healthier if you eliminate the crap and focus on whole foods. It stinks because I know you use a lot of time-saving processed food in your recipes. Not an easy road for a busy mama of 4.
Julie Reed says
Oh my goodness! Working for an allergist for the last 10 years my first thought with her picture was HAE- I’m so glad they were able to rule out any other auto immune disorders! Glad they were able to diagnose so quickly and y’all are on the right track!
Tricia Palmer says
You will ALL get through this, and I promise it DOES get easier! I was diagnosed with Celiac almost 2 years ago, 6 weeks before my wedding…not being able to eat your own wedding cake is a HUGE bummer let me tell you!
The first few months are definitely the hardest and most overwhelming, but soon the shopping will get easier and you will know what your’re looking for. A few helpful tips:
You don’t have to give up Trader Joe’s! In fact, they are one of my favorite places to shop. They have a huge list on their website of all of their GF foods, I have one printed and in my car that I take in with me every time I shop. This list isn’t even all inclusive! It only contains the items that are made in facilities tested for gluten levels below 20 ppm (certified GF). I trust MANY more TJ’s foods and products than are on that list. Also follow @traderjoesglutenfree on Instagram for good tips.
Be sure to connect with the deli counter at your grocery store. All Boar’s Head deli meats are GF, but if they slice a different meat on the slicer before, you want to make sure they wipe it down, etc.
Target also marks all their Up and Up over the counter meds as gluten free (ibuprofin, antacids, etc.). CVS sometimes does as well. GF living can be expensive, so it is nice to know which store brands are good.
Tell your pharmacist that she can’t have gluten so they have it on file, that way if she ever needs antibiotics or something, they will confirm that whatever the doctor called in is gluten free.
Out at restaurants, be careful of shred fryers. This was one of my biggest mistakes early on. Fries are GF, so I can have them! Not if they have been fried in the same oil as the chicken tenders…
Most cities have Celiac or Gluten Free Facebook groups where people post restaurants that are great or claim to be great but really aren’t. bakeries, etc. in your local community. I also look for these in cities where I am traveling so we can make reservations at safe restaurants. Definitely join those and look for MANY of the amazing gluten free bloggers all over instagram. @Nogluten.noproblem is a great one and they have awesome cookbooks as well! @celiacsweetie also has a TON of baking recipes.
Thankfully, the world is so much more in the loop and there are so many more options available! There is even a bill in congress currently that would require labeling of gluten on medications, which is one of the hardest ingredient labels to read! It is so overwhelming, but the Celiac/GF community is strong and so supportive. We are all in this together!
So glad she is feeling better, you got this!! And try the King Arthur All Purpose GF flour blend, it is my favorite substitute for baking 🙂
Stacie Mckee says
Super hard season, for sure. Prayers for the whole Shull family. Autoimmune is no joke. People don’t realize all the different diseases and how they impact your life, forever, without cures. I have Thyroid problems and Rheumatoid Arthritis. I’m very excited for you to share new recipes and any books worth reading. They can help anyone in the autoimmune community. I worry daily about my 2 daughters and autoimmune problems. Anytime they say something hurts. I automatically thing Dang, it’s too early. But the more knowledge we have the better we can help one another. ❤️
Brianna says
Prayers for your sweet girl. If you haven’t already, check out Thrive Market online. You can filter by gluten free options!
Carrie says
I’m so sorry you had to go through all of this. I don’t have celiac disease but I try to watch how much gluten I eat.
A Couple of Celiacs is a blog out of Kelona Canada and they are two sisters – both celiac. They have some very good bread recipes. Since you are such a good cook, maybe it’s something you could easily figure out. I’m not such a great baker but their recipes always look amazing.
Glad your little sweetheart is on the mend.
Megan Hagerty says
One recommendation is the Tate’s Gluten Free Cookies. Can you buy them at your local supermarket? They originated at a bakery in the Hamptons. They also do mail-order. Kensington is lucky to have such a supportive family!!
Casey says
Celiac + Hashimotos for me, dairy free for one of my girls who has autism. I am very inspired by your completely cleaning everything out and going all in as a family. I’m hopeful to get there at some point but autism and general pickiness makes that a bit more tricky. Pinterest is your best friend, luckily we live in a time where it’s really easy to make the switch. Except for pasta. Why does gfree pasta taste like cardboard?!? So glad Kensington has done so well!
Lindsey says
Oh your sweet girl! What a brave little thing. Prayers for you all this am.
Samantha says
Mom’s place gluten free has some pretty good mixes because as you said it’s very hit or miss in the taste for those products. Also, be careful of things being tangentially “glutened”, for example while the fries may be fine they can be sharing a fryer with things that are not. Also, it seems silly but shredded cheese can have gluten in it to keep the shreds from sticking together and that’s something I failed to realize in the beginning…it takes some time but you’ll get the hang of it! I also recommend the 4c seasoned gluten free breadcrumbs, by far the best I’ve found my non gluten free family members even use them when I’m not around. Also, most Haagen Dazs and breyers naturals are gluten free if she ever needs a treat!
Melissa says
You’re an amazing mama Shay, I was almost in tears when you wrote about that week when everything was coming at you all at once. Praying for strength for you all as you navigate this disease. Thank you for sharing kensington’s story.
Kelsey Kirchner says
Hi Shay!
I have been reading your blog for many years but have never left a comment! I’m sure you will receive many suggestions and recipe ideas today from your amazing followers but I wanted to suggest looking into a Canadian company called Epicure. They recently expanded into the USA and you would be able to order items right to your door. And the best part? They are ALL gluten free! They have everything from
Mac & Cheese to brownie mix! I think it would definitely be worth looking into for your family. If you would like more info just let me know! ❤️
Courtney Bozeman says
I haven’t went through all the comments but did they say why she all of a sudden broke out since she has been eating gluten forever? I’m just curious. Hugs and prayers for you guys as you adjust to the new normal. 🙂
Amanda says
I was diagnosed pretty late in life in my early 20s. Going gluten free at first was horrendous and a bit traumatic but I eventually learned how to eat. One thing I should mention is that if your other kids (and you) aren’t regularly exposed to gluten, you will likely end up developing a sensitivity to it. So if there’s a way to keep everyone else having it at least once a day in some form, you should.
For snacks, made good has a ton of things (granola bars, Rice Krispies squares, granola balls, cookies) that are gluten free and delicious. There are several flour blends available but better batter is probably one of the best, or cup 4 cup. Baking won’t ever really taste the same but eventually she won’t remember the difference. I know I don’t.
Barilla is the best and closest tasting to regular pasta I’ve had. There’s also good protein pastas made with chickpeas but they’re not as good.
I make your recipes at least 3-4 times a week and I can say that they are easily made gluten free. Eventually it will all become second nature!
Susan says
Hello!
A friend of mine has had Celiac’s for several years. She was diagnosed basically when they didn’t know much about it. Fortunately for this whole no gluten diet craze, food choices have become a lot easier. When we first met, you had to go to specialty stores or buy stuff online. And going to restaurants was a nightmare. I’ll also recommend the blog called Iowa Eats – and she has it and is very sensitive to it – so her family all has to eat gluten free. But she has a lot of info and recipes on there. It is amazing how much stuff has flour in it! Even shredded cheese has it! It does require a little more prep and organization but you’re already so organized as it is. My friend uses a lot of the GF mixes if she’s going to bake something. It is a little more difficult to make that kind of stuff from scratch. Trader Joe’s has a lot and so does King Arthur. Costco has a lot of GF items too. You’ll be surprised how many options there are.
Liz Even says
Shay!! I have no words. I know how devastating this can be. It effects everything. My sister and 2 nieces have celiac. I have lots of words and wisdom. I will email you or maybe we can meet to talk. We have learned so so much over the last 5 years. And really my niece over the last 20 years. Since celiac is a newer autoimmune the drs has no idea what was happening with her. My other niece and sister have no stomach issues. I want to be careful not to share too much on here because it’s their story but I know they wouldn’t mind me emailing you or talking to you or them talking to you. They are up this way quite often. The girls could help explain lots about going places and over at friends and navigating that. Anyways…will email you if you’d like.
Yvonne C says
Hi Shay! I did not read through all the comments, but there is a blogger that I like who has Celiac Disease and she has TONS of recipes and tips for celiac. The bog is called: IowaGirlEats. I think it might be really helpful for you to check it out.
I know how challenging auto immune disorders are. My son has alopecia aerate and it has been such a challenge to get it in check. Hang in there.
Tiffanie says
I have a son with peanut & tree nut allergies watching everything he eats, etc is hard! Check out Fed and Fit as Cassie posts lots of gluten free recipes and baking too!
Samantha says
Find me gluten free is a great app for travelers! I’ve used it all over the world…I’m taking Austria to New Zealand to Colorado and it’s got some really great local insider recommendations on places safe for us Celiacs to eat
Erika D. says
Thanks for sharing this, Shay! A daughter of a friend if ours has Celiac too…she is affected by certain shampoos that have wheat in them. Just something to look out for.
Eryn M says
Ugh! You are going through a really tough season right now. I know the beginning is tough…lots of change and unknowns, etc. I hope it gets better with time as you get more knowledge under your belt. Prayers that it gets/stays under control and she can continue to thrive. Bless her! Tell her we are praying for her health!
Elizabeth says
Better Batter is the best gluten free flour I’ve found. I’ve had the most success with that one when trying to replace in regular recipes. Gluten Free on A Shoestring Bakes Bread is an awesome book and she suggests using Better Batter in all her bread recipes! The first few months are tough but I really does get easier!!!
Katie says
In September of 2018 my daughter was also diagnosed. She unforutnely had been miserable for 6 weeks. She had the stomach issues, leg cramps& was being treated for migraines. Since going GF she has not had any issues. She has been “accidentally” glutened once and seeing her bent over in the fetal position in tears from pain about did me In. I’m so thankful she is 9 and knows to check everything. My two pieces of advice are 1. Find a local bakery that makes GF cupcakes my daughter has found a favorite and now anytime there’s a party at school or for a friend i just swing by and get her one so she doesn’t feel left out. 2. Aldis has a lot of GF items for very reasonable price.
Erin says
A blog friend of mine has Celiac and so does her young son. She has a blog called Wheatless and Happy. She has to travel some and eat at restaurants for work, and she swears by the Nima sensor. You can test your food and it will tell you if there are traces of gluten in it. Even dishes that were supposed to be GF have tested positive bc of cross contamination. It has saved her from feeling really terrible many many times. Prayers to all of you in this transition. You’re doing a great job.
Jenny says
One of your best posts in the many years I’ve been reading along here. The timeline, the photos, the process of diagnosing is so helpful. I hope that you’ll tag your existing G FREE recipe posts, share some of your GFREE blunder recipes (if you figure out WHAT went wrong for others who are experimenting with how to use new ingredients too) and create new G FREE recipes. I have a feeling those of not “diagnosed” will see improvements as we focus on eating less gluten in our diets as well. I have definite reactions to gluten, not severe enough to look like poor K did in September (sweet girl, thank you for bravely allowing your momma to share your story and photos!) but now I’m worried that maybe it could progress into something like that so I’m super interested in following along with your G FREE family journey in the years ahead.
Thank you– god bless– will keep your family’s health in our prayers,
Jenny
Suzanne says
Hi Shay! As with Kensington’s journey, I did not have GI symptoms but a rash, fatigue and brain fog. After clearing all gluten of my diet, I am so sensitive touching my children’s bread. I get a rash on my hands. I wear gloves now.
My daughter was diagnosed 6 months after I was, but she gets GI symptoms. It has changed our whole lives but we eat healthier and are more aware and proactive in caring for ourselves and our bodies now. Thank you for sharing. isolation or exclusive from food has been hard. Sharing and talking about it, making others aware it’s a disease is huge. Will be praying for you
Diane says
Google FODMAP. This is research from Monash Univeristy in Australia for GI issues. There is a great app K would find helpful as foods are identified with a traffic light system. You will also find info on Pinterest and recipes on A Little Bit Yummy. These sources changed my moms life in the past year.
Elizabeth says
I did a gluten free period of four months when my son was an infant (I nursed so I had to be gluten free). His blood tests had reactions to both gluten and soy, so we eliminated both and then added back one at a time to see if only was was our actual culprit. It turned out to be soy. But during that few months, the best advice I got was to not try to make things gluten free by using substitutes. Because for things that were developed and loved because of the gluten, there really just isn’t a replacement that is going to ever be close to as good. A friend steered me toward choosing things that were less reliant on gluten to make them good. She suggested things like going for fruit based desserts like cobblers, crumbles, and pies over things like cakes and brownies. I found this to be a really good pie crust recipe, dubbing vodka for a little of the water to make it flakier (I do the same in regular pie crusts too): https://www.whattheforkfoodblog.com/2015/08/17/gluten-free-pie-crust-recipe/
God bless!
Jordana says
If you haven’t heard of the GAPS (Gut and Psychology Syndrome) Diet I highly recommend you start to look into it. It will seem completely too much and overwhelming, but it is an actual cure. My daughter had 22 food allergies and she can have everything except she still stays away from gluten because she has Celiac disease. It will heal your daughter’s gut. It is doable (even though it will seem overwhelming) because it is for a period of time and not life long. It is worth looking into. Besides the gut and allergy benefits, my daughter’s anxiety went away (the psychology part of GAPS). It was a huge blessing for us and so many other people it is really worth looking into.
mimi Buerkle says
Dear Shay,
Kids can really surprise you. They often handle news like this better than adults. My son was 16 when he was diagnosised with Type 1 Diabetes. Out of all 4 of my children, I thought he’d would of been the worst to handle this news. He rose to the occasion and we are so proud of him. I am a Pediatric RN, as a mom and nurse I feel your pain for your child. As time goes by she won’t know the difference with what she is living with, and it seems as if she has already risen to the occasion!!
Gail says
My daughter-in-law and daughter have an intolerance to gluten (not Celiac) so I have learned to cook a few things GF for them. I use Pamela’s Products, they are all gluten free. I have used the all purpose “flour” and made scones using my regular recipe and just substituted the PP flour instead and you could not tell the difference! I made dressing at Thanksgiving the same way and it was very good too…a bit ”heavier” but taste great. I made a white chocolate cheesecake and used GF gingersnaps for the crust instead of graham crackers and used a recipe that did not include flour. Everyone raves about it as one of the best I had made, I think the gingersnaps made the difference too. I buy Brown Rice pasta all the time and it is good too.
Praying for you as you guys navigate this new eating style.
Katie says
Highly recommend thrive market for shopping! We sort by diet restriction and it makes it so easy!!
Shelby Ratterman says
I have Celiac Disease and have been making your recipes gluten free for years! It’s overwhelming at the beginning but it will get easier. Praying for your transition!!
Debbie says
Shay, get Elisabeth Hasselbecks book on Amazon! Here is the link!
https://www.amazon.com/Deliciously-G-Free-Flavorful-Believe-Gluten-Free/dp/0345529391
steph says
Wow! What a crazy couple of months for you all. That is a lot… You guys have had a lot on your plate. Your post is beautifully written Shay. I know you are sensitive that things could be much worse… but Celiac does change your life and therefore there is much to process and work through.
I don’t have Celiac but know many people who do. I don’t know if you follow Erin at Cotton Stem… but I believe two of her girls have it. She may be a good person to talk to in adjusting as a family with this condition etc. Also… I know you like to bake … but I follow … erinliveswhole on ig and she has awesome desserts. Her brownies are excellent…. really everything she makes is excellent and more natural sugars are used.
Thank you for opening up your life today and sharing all that has been happening. You all are so brave and a great example to us all.
God bless,
steph paul
Jennifer Gould says
WOW. WOW. WOW. In tears over here. ??? You sweet mama have been through so much, and I know it is the peace and strength of God that has sustained you. First, I am so sorry you have had to go through all of that, and then all of that at the same time! Being on the other side of a health issue myself, I know how it feels when you don’t have answers, the unknown, the uncertainty, the fear. Thankfully our God is good all the time even when we don’t feel it. I am praising Him this morning for answers for you guys, for healing, for Kensington’s progress, for your courage to share your story, the boldness that it takes to be vulnerable and for continued peace, strength and perseverance as you travel down this road. Looking back at being sick, I am so grateful that God gave me that opportunity. It doesn’t feel like an opportunity when you’re going through it, but on the other side, I have been able to help my family and others that are in the dark about food. I ended up seeing a holistic doctor in Dallas (635/Hillcrest), because every doctor I saw had no idea what was happening. All tests came back normal or negative. One of the first things the holistic doctor did was change my diet. So much of how I feel is related to what I eat. I have a co-infection, a virus, which is similar to Lyme’s disease. Through diet, supplements/vitamins, and a healing God, I am free from the inflammation, joint/muscle pain and other side effects I dealt with for many many months.
Second, I applaud you for taking your entire house gluten free. As a mom who had to dramatically change my diet, I still wanted to give my kids the things they desired, which are the things that hurt their bodies. I had to get to the realization that I need to do what’s best for them even if it’s not what they want. I still struggle with this. Our church is doing a fast, and the kids are eating what we eat, not too far from the norm, but to go without sugar, you think we were killing them. ? I know your kids, you & Andrew will see so much good come from changing your diet! I know you already have! You’ve been battling through the hardest part, but know there are many people walking right alongside you doing the same thing. You are not alone. You, Kensington and your sweet family will be in my prayers. Our God is a way maker, miracle worker, promise keeper, light in the darkness. Galatians 6:9 Do not grow tired in doing good for at the proper time you will reap a harvest if you do not give up!
Lastly, due to my food changes and my son developing rashes and stomach pain, while we are not a strict gluten free house, we don’t eat dairy and try to eat gluten free as much as possible. I can’t wait to hear more as you post, because cutting out wheat is something we need to do. It is doable while still enjoying things you love. Both of the books you read immediately came to mind as resources. I have also loved learning from Dr. Mark Hyman. He wrote a book, and recently released a cookbook, Food: What the Heck Should I Eat and Food: What the Heck Should I Cook. I have also found awesome recipes online for paleo corn bread (we call it cake bread, because it has more of a cake consistency) and last week made fried chicken. GIRL!! It was good. I’ll send the links.
Keep up the good fight. Run your race. ??♀️ Cheering you on!
Isaiah 43:18-19
Forget the former things; do not dwell on the past. See, I am doing a new thing!
Psalm 107:19-21
“Then they cried to the Lord in their trouble, and he saved them from their distress. He sent out his word and healed them; he rescued them from the grave. Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind.”
1 Chronicles 29:13
“Now, our God, we give you thanks, and praise your glorious name.”
Katherine Heath says
Bless her sweet heart! Seems like she handled it like a champ! I too have Celiac, I was diagnosed almost 9 years ago when my first baby was 18mo old. It was quite challenging to figure out the GFree life at first but now it’s second nature. I have tried EVERY single brand of GF food. Some are AWFUL but I have found some really great things too! I have found using King Arthur All Purpose Flour Measure for Measure has been a game changer. Any regular recipe that calls for flour, I just sub in this flour and so can have all my favorite foods again. I use it in breads, cookies, meatballs, cakes, etc. Also Simple Mills crackers are some of the best GF crackers I have found. Consistency of a Wheat Thin and they don’t taste like dirt ?. The best GF noodles I have found as far as consistency and taste are the Ronzoni brand. Surprisingly enough Walmart brand has a few great GF items too (Rice Krispie treats, box pasta mixes (like pasta roni), Oreos, etc). So sorry you guys are having to go through this but I promise the diet changes will become easier over time!! The only thing I have yet to find a good GF substitute for is a good donut (not a cake type but like a doughy Krispy Kreme type) and sushi (imitation crab meat and the seaweed wrappers often have Gluten ???).
K says
You should talk with Kristin a food blogger at Iowa Girl Eats. She developed Celiac disease after the birth of one of her children and now she focuses on GF recipes and restaurants.
Kamryn Quackenbush says
I’ve had tons of health problems related to dietary issues and am allergic to gluten, against all grain by Danielle Walker is the best gluten free food I’ve ever had
Jen says
So sorry to hear of everything you are going through right now, but you are handling it all with such grace! Bravo – what a great role model! Do you have Aldi near you, by chance? They have an entire product line…I think it is actually called LiveGFree or something like that…of gluten-free products. We have tried a few, though we don’t “need” to, and they are pretty great! Several baking mixes that may help on that front! Best wishes!
Katrina says
Aw! I’m so sorry Kensington (and your whole family) have had such a rough few months!! I will be praying for your family! Thank you for sharing your family’s struggles!
Jessica Faulken says
I am wondering why you are trying to have your whole family 100% gluten-free. It’s absolutely important to support your daughter, especially at home where you can control it, but by eliminating it completely from your other children’s diets, is there a concern that could create an allergy to gluten down the road?
Mix and Match Mama says
We’ve been told that is highly unlikely. The more I read about gluten, the more I am beginning to feel it should probably be eliminated from everyone’s diet.
Lauren says
SWEET Kensington! Thank you both for sharing!
Megan says
I was diagnosed with Celiac last January and my primary symptom was my skin as well! After years of dealing with acne and tons of skin issues, it changed in a matter of days! So glad you figured it out!
My best recipe tip is using gluten-free oats in meatballs/meatloaf/etc. Just grind them up in the food processor. It’s so good I don’t even miss the breadcrumbs.
Kayla Bruce says
Hi Shay! I commented on your Insta post, but I have been gluten free (gluten allergy, not celiacs) for about 5.5 years. I’d be happy to provide any insight or advice! I have a cousin (non blood related) who shows symptoms of Celiacs the exact same way as Kensington, and he is in his thirties. For GF flours, the bad tasting ones are often the ones that are made with bean flours. My favorite all purpose flours are King Arthur’s and Bob’s Red Mill (blue package, not red) made with rice flour. We regularly just order King Arthur’s from Amazon. You may know, but one other sneaky place gluten shows up is in some of the powder ranch packets– just FYI. Praying for you and your family in this season!
Mandy Delbello says
Good job mama! You have had a lot on your plate. I’m sure it’s mentioned above but make sure her shampoo, conditioner, etc are all clean and contain no gluten. As well, when she starts to wear make up, make sure it doesn’t have any gluten in it. Gluten is everywhere!
Colleen says
Oh my word. Your sweet family has been through a bruiser of a season. As someone who has had autoimmune issues all my life, I want to tell you… You’ve got this! It is hard now; but it gets easier everyday. Here are a few of my most favorite recommendations for anyone just starting out.
1. Sweet Laurel Bakery Cookbook – the BEST paleo/gf desserts I have ever had in my life. So good!
2. Any of Danielle Walker’s Cookbooks are fantastic.
3. Look up Paleo Running Mama blog (lots of good stuff. I love her pumpkin bread)
4. HG Sply Co in Dallas is a fantastic restaurant with lots of GF/Paleo choices. They are super knowledgeable. We have one in Fort Worth and it’s amazing.
5. Make a few of those cookies in Sweet Laurel Cookbook (snickerdoodle and chocolate chip are my favorite) and always keep a batch in the freezer. That will allow K to know that she always has something sweet just for her anytime she needs it. Mentally, that will go a long way to help her feel less deprived and more empowered.
I’m rooting for y’all!
Mary says
Welcome to GF Life. Fortunately the food options have increased over the years making life much easier. I am sure you guys will figure it out quickly and not miss gluten 🙂
Jennifer Gould says
Paleo Fried Chicken
https://www.thepaleochefstable.com/paleo-fried-chicken/
We used a mix of almond flour and coconut flour instead of Paleo flour. We left out the cayenne, because our kids can’t do spice yet.
Paleo Cornbread Minus the Corn
https://www.ourpaleolife.com/paleo-cornbread-minus-the-corn/
I didn’t know this before, but corn is super inflammatory.
If Andrew or if you are interested in getting any of the kids checked out without doing tests or surgeries, I would highly recommend our holistic doctor. She is a Christian. Bonus. While her methods are beyond what I understand, she is good at what she does.
Dr. Julia Schulenburg
Holistic Center for Healing
Lara Kessler says
My heart hurts for your sweet girl. I have been GF for about 2 years due to Hashimotos. For baking, pick up some cup4cup flour. It is AMAZING! They sell it at target (and amazon but its more expensive) now! You will LOVE it! It literally is a cup for a cup and your recipes will be perfect! I stopped baking completely and tried all kinds of flours but this one is a lifechanger! Sending a huge hug, friend.
Sara says
If you haven’t already, try visting healthygffamily.com . It sounds like they went through a similar experience (and she has many, many recipes!).
Jennifer Scari says
So sorry to hear about Kensington. My husband was diagnosed with Celiac 7 years ago. Like you, I also love to cook and bake. There have been lots of improvements in the past few years, but there are still a lot of bad GF products out there. I have found that Cup-4-Cup flour is hands down the best substitute for GF flour. It was developed by Thomas Keller. Best pasta is Le Veneziane. Some stores carry it, but it can also be purchased from Amazon and Vitacost. Trader Joe’s also has the best GF bagels and GF Joe Joe’s (oreo type cookie). Mission Tortilla GF version is great. BFree GF bread is great too, but hard to find. Dining out can be very trying. Ask lots of questions bc often the servers are not as educated on gluten as the chefs. Also, if they tell you that they have GF pasta, make sure that it is cooked in a dedicated pot. Some will cook it in the same pot as the gluten variety. Same with fryers, make sure that they are dedicated too. Good luck on your journey.
EW says
Thank you for sharing. You probably felt like you were just putting one foot in front of the other, minute by minute, hour by hour. I hope you can read this summary and see how it all added up to tenacity. Way to hang in there and get good answers! You and your family are in my thoughts.
Cara says
Shay, I am so sorry that you and your family are going through all of this. I will keep you in my prayers! Although I am not GF, I follow a wonderful mom of three named Kristin and her website is called Iowa Girl Eats. She makes a ton of gluten free recipes and wrote a book about being gluten free.
Kelli says
Wow – thank you so much for being transparent about your story and all that Kensington is going through. By sharing, I know you’re helping others. A year ago I was diagnosed with Hashimoto’s (hypothyroid issues) and my doctors immediately suggested a gluten free/dairy free diet. It isn’t always easy for sure, but goodness it’s SO worth it to be able to live your BEST LIFE! I’m excited to see all of your new recipes because it has been hard to find good things to eat. My good friend and neighbor also has these same issues and has her own blog – check out this post for Gluten Free Cinnamon rolls (https://firefitfamily.com/gluten-free-cinnamon-roll-cookie-recipe/). I have noticed that many stores are starting to carry more gluten free items and will often have an aisle or section in the store dedicated to just gluten free items. Continue to share and praying for sweet Kensington. She is SO strong!
Ellen says
Poor kiddo! I’m glad you got a diagnosis, though, and I know you’ll all do great.
I’m not an expert, but two quick things: Simple, from-scratch eating will be your best bet: simply prepared fish, chicken, beef, fruit, veggies. Also, we were in Europe this summer and it was amazing how much more clearly labeled and how easily available GF restaurant meals were! I guess the U.S. will catch up!
Sarah says
Dermatitis Herpetiformis. I’m a Frisco, TX mom whose husband was diagnosed with DH from Celiac about 10 years ago…after a year of multiple doctors and painful full body rashes. We had a house full of teenage boys and had to completely relearn all new recipes, approaches to eating out, etc. but it is now our new norm and all is good! Feel free to reach out if you have questions on how we handle hosting events at our house, church socials, road trips, favorite places in Frisco where cross contamination has not been an issue for us, etc.
Kim says
Hi Shay. First off, my prayers to you and your family. I can’t imagine how difficult that week was for you hearing all this news at once, and I am so happy that K is doing better and praying that the rest of your kiddos are doing well too! One question that I have (and apologize if this was already asked/answered in a other comment – I didn’t read every single one) but did K have any symptoms prior to the September incident? Minor stomach or skin issues that in hindsight may have been a early symptom? My 7 year old is going though some testing now for stomach issues. No skin rashes to date but there is definitely something there and wondering if K showed any other minor signs prior to this? Thanks for your help and thanks for sharing this tough news to help others! ?
Mix and Match Mama says
Looking back, yes, we can see that she was “blotchier” more red, had skin sensitivities in small areas that were most likely early signs.
Macy Strozier says
I love how even though she was going through so much, Kensington stayed positive! She seems absolutely sweet and patient, the key components to deal with this disease. Thank for sharing, I wish I could share recipes for you but none of my family members are g-free. I’m praying it gets easier for y’all and that Kensington continue to stay strong!
Alyssa Zellick says
Shay,
Thank you to you and Kensington for sharing this Important subject with your readers. I have had Crohns Disease for nearly 15 years.. diagnosed as a young married and had recurring second trimester miscarriages and skin and joint issues Until I went GF! Since I went GF, my skin has cleared up, my joints don’t ache and swell, my gut has normalized and most importantly, I’ve had two healthy children! Wheat Belly is a great book and of course all of Danielle Walker’s cookbooks have helped me quite a bit Since I’ve decided to completely go grain free in the last 4 years! It must be just a total lane switch for you with authoring all your delicious cookbooks but I’m sure you’ll be inspired to put some GFree goodies out for your familiy and possibly even for your audience! As you know, since you’ve read Pearlmutter’s book, gluten wasn’t even a thing until the 90s which is why we are all so sick now! Here is some good news to our little miss world traveler, Kensington… I have several friends that are diagnosed celiac and they’ve traveled to Italy and have been able to enjoy the pasta and bread There since it’s free of gluten! Can you believe that?! Doesn’t it kinda make you wanna sing that the hills are alive with the taste of pasta??!! Praying this actually becomes a huge blessing to you all and it resolves many health issues that are lurking in your immediate family.. celiac and gluten intolerance has a hole host of symptoms but So glad the caught it!
Alyssa Zellick says
Oh yes and TJ’s GF brownie mix is delish! And their Carolina gold bbq sauce 🙂 bit you’re right.. it hides in marinades, condiments, dressings etc!
Cheryl Cash says
Thank you for sharing, Kensington and Shay! My gluten issues presented on my skin as well (when I was 42 years old). I described the skin coloring in its advanced stage as looking like I had been burned. I recognized this look in K’s pics here and I am so sorry she has endured that! So thankful with all of you that she has found relief and help. I have been gluten free for 6 years now. A few recommendations: Siete products, especially their taco chips (I prefer the lime). They are amazing and my whole family loves them. Danielle Walker’s Real Deal Chocolate Chip Cookies–these are another treat that my whole family loves as they taste very close to the *real deal*. These cookies helped me so much as I transitioned and grieved the loss of many treats I loved. Simple Mills products (crackers and mixes) are very clean eating and yummy. Namaste flour mix–I have found this flour mix to work very well in my old regular-flour recipes. Danielle Walker’s cookbooks and website have wonderful supply lists–both for groceries and equipment/tools for the kitchen. Thrive market–is online shopping specifically for those of us with food related illness and allergies. Restaurants: Outback and Chipotle are fabulous for gluten-free eating across the country. Also Find-me Gluten Free app–helps locate GF restaurants when you are out and about. Travel: Italy! We live overseas and travel frequently. (Happy to message with you about this if needed) Italy is by far one of the very best countries for gluten free eating. Every single restaurant we approached was informed, compassionate, kind and helpful. We ate very well and enjoyed every second. Finally, I have been very helped and supported by functional medicine over the last few years. Blessings to you guys as you navigate this. Two of our four children also have the same issues I do, so I have navigated this for myself and with the kiddos. May you find what works best for you in the midst of so much info and know you are not alone. Blessings to you as you transition and adjust.
brinkley says
Wow, that was a lot in a week, but I’m not one bit surprised that you are all handling it with such grace. We had one of those months mid 2019, and they are a LOT…continued prayers as you head down this path.
I do want to say though, that this post is an answered prayer in a way for me though. My husband has been looking into some gluten free eating, which I’m not opposed to, as I have an AI and gut health is very important in the AI world. But holy pajamas batman, finding tasty recipes is HARD, so to know that you will be posting gluten free options just makes my day. I’ve always loved your recipes and look forward to seeing the new g-free stuff!
Kelly Henderson says
Bless all of you! Managing a food allergy is life changing but you will get there. Our daughter is allergic to peanuts, tree nuts, rice and corn. It’s definitely a process to eliminate things from your diet. Thanks for sharing with us and good luck in your new normal.
Cassie says
Hi Shay,
I baby sat for a family with 4 boys a few times and one of them had celiac disease as well! They do not eliminate gluten entirely and everyone else in the house eats gluten. I notice how cautious she was in preparing two different meals for them before she would leave and told me how to prepare their meals when I was alone with them. They also had two ovens next to each other, a gluten free oven and a gluten oven. I’m not sure if they always had the two ovens or if they had another put in when they found out. The gluten free oven was half the size of your standard oven. That could be a great idea if you ever happen to struggle to find gluten free ingredients for baking or dish! Keeps us updated on everything and how it works out for your family!
Kristen says
When it rains it pours, right!? So glad that you got a diagnosis and you are where you are now (on the other side at least)! Looking forward to seeing how your cooking changes, but also tracking Kensington along the way. What a strong girl she is. But figures with a strong mom like you! Praying for your family as you continue navigating these murky waters!
Kristin says
I thought my oldest had Celiac (so did the pediatric gastroenterologist) but after a lot of bloodwork and an endoscopy where they biopsied his entire digestive tract it was discovered he has Congenital Sucrase Isomaltase Deficiency . This means his body does not produce the enzyme that breaks down sugar. We treat him though diet and he is doing very well now. This may be worth exploring with Andrew. The symptoms were identical to Celiac but this particular disease is extremely rare so it is probably not on most doctors’ radar. Best of luck with your family’s health!
Andrea at Opulent Cottage says
I remember reading a while back, on the Wheat Belly site, about a portable testing device for hidden gluten — great for use when you eat out, etc. Also, for Andrew, I sooo recommend Fast Tract Digestion by Norman Robillard. His perspective on IBS is unique and has been life changing for me! I didn’t even remember that I could feel this good, without having constant problems that weren’t resolved by just going gluten/grain free. Good luck on your journey Shay, I know it’s a crazy road to travel! You are a great momma 🙂
Crystal DeWeese says
From our family with a celiac child diagnosed over two years ago:
1. Our symptoms were molluscum all over legs and not going away – despite 5 different doctors “treating it”.
2. Don’t try and replicate gluten-heavy foods at first (ie. breads, pizza, desserts), they won’t match your expectations. Stick with simple meals and treats that are not trying to be something else.
3. Schools, parties, and eating at other people’s homes will be sometimes catch you off-guard or be difficult.
It does suddenly get easier, and you begin to add in g-free substitutes or have fun in the kitchen again. Good luck!
Maryann says
My mother was diagnosed with Celiac over 53 years ago. She was lucky there was a specialist visiting her hospital at the time who diagnosed her otherwise she may have died. We grew up eating mainly “meat and a veg” type dinners as a result. It’s so great so much more is available these days and she still gets a thrill out of being able to eat GF pizza and pasta after many years of going without.
Also- I have read that there is a 4 day celiac cruise with just GF foods.
Kara Smith says
We just went gluten free last week to improve our gut issues.
I have been shopping at mutiple stores too looking for gluten free items. We look forward to your recipes and suggestions- and your next cookbook!
Lots of good apps and FB pages for gluten free living.
I am so glad Kensington is getting better!
Angie says
I’m so sorry, Shay. That’s A LOT to have happen in such a short period of time. Sending prayers to you, Kensington and your entire family. Thank you so much for sharing.
Brianna says
I’m so sorry to hear this news! My husband is gluten free (not because of choice). You have received so many wonderful tips. Thought I would share some things I have found that are really good and also more kid friendly.
Costco:
– sabatassos gluten free 4 cheese pizza! It’s amazing! Sometimes we add our own toppings.
– cheese bites (so good for bread)
– Parmesan folios cheese wraps (I use these for wraps for lunches)
Lots of cheese items!
We love thrive market. They have amazing gluten free snacks. They sell the brand Pamelas which has amazing gluten free cornbread and brownie mixes.
I have a really easy homemade waffle/pancake recipe and a chocolate cake! Everyone says they can’t tell the difference. I could email them to you if you would like.
A lot of times for noodles we use spaghetti squash instead. Aldi has a lot of gluten free options!
Hope you find some of these tips helpful! I love reading your blog! I’m glad that you were able to find out what was wrong.
Ashley says
You are not alone. We don’t have Celiac but I have two kids with multiple food allergies so we have to change everything we do. How I can make things. What recipes. The multiple stores to get groceries. Reading every label. Being careful going places, family gatherings and restaurants.. all of it. But it gets easier.. honestly! I keep a running Note on my phone of things we CAN eat and make for supper. That gives me ideas quickly when I’m feeling like I can’t figure out anything for supper and feel like we are eating the same things over and over. You’ve got this!
Elizabeth S says
Goodness! Your family has had a rollercoaster year. That picture of Kensington broke my heart. She is so tough! I know it will be hard getting used to the changes. My sister-in-law has celiac, and now it’s just part of life. Her 8 year old daughter is also gluten intolerant, so they have taken her off gluten. There is really good gluten free pancake mix (I think by bisquick) my mother-in-law makes. Everyone likes it in our family! I feel like some of those boxed baked good mixes that are gluten free are decent.
Anna says
Hi Shay, I am so sorry Kensington is going through this, but so happy that you have a diagnosis that will lead her to better health! I was diagnosed with Celiac disease three years ago and know what a difficult lifestyle change it can be. I know all too well the fun of shopping at multiple grocery stores. I finally signed up for Instacart and it has made life so much easier. My entire house is also gluten free – I highly recommend King Arthur products and Katz gluten free donuts (in the freezer section). Thanks to Kensington for sharing her story with us! She is a brave girl!
Becky Rasdall says
Wow, what a lot you’ve had to deal with, I’m so sorry and will continue praying for your family! I have an autoimmune disorder as well, and my son and I are both GF and DF, we’ve learned a lot over the past few years (and have found the best brownie recipe!!). My favorite person to follow is Danielle Walker, against all grain, and everything from all of her cookbooks is AMAZING! I’m sorry you are going through this season, but I will look forward to your recipes being ones I can use now!! Here’s the best brownies; https://pin.it/n7lynn73xxg27j
Jill R. says
I live a gluten-free lifestyle because of stomach issues as well. There is a blogger I follow, Rachel Mansfield (rachlmansfield.com) who has delicious gluten-free recipes, meals and desserts! The transition can be challenging at first, but the recipes are out there! And the benefits pay off in the end… best of luck to Kensington and your family!
Marina says
Hi Shay! I’m so sorry you are going through so much and all at once! Do you follow Danielle Walker on Instagram? Her blog is called “Against All Grain” she has autoimmune disease and she shared everything on her blog. She also has 4 recipe books, that have very good recipes. Check her out! Also, I highly recommend getting a thrive market membership. It’s like a Costco for healthy foods and online. I’ve seen Sean and Catherine advertise it on social media. I had the membership years before bachelor people started posting about it, lol. I hope this helps. There are so many options for treats especially that you can just order and have delivered. My husband has had Crohn’s disease for 8 years now and last November was hospitalized and diagnosed with hyperthyroidism, and then Graves’ disease. Another autoimmune disease. It’s been crazy hard for my family of 6, soon to be 7.
Erin says
So much for your family at once! I can only imagine the stress! GF is an adjustment for sure but is completely doable! I’ve seen many of the gf blogs I’d recommend already mentioned in your comments. One more to add is Allergy Free Alaska. The writer has autoimmune diseases that she helps manage through diet. She cooks a lot from scratch which ends up being multiple types of flours per recipe, but it’s worth it!! Also in the Dallas area there is a chain of bakeries called “Unrefined” that are gf. I go there every time I’m in the area. It is so nice to be able to go to a bakery and now I can eat anything there without getting sick. Might be a special treat for Kennsington when she is feeling down ♥️
Sharon Temple says
Praying for Kensington! I didn’t read all the comments to see if this was recommended but do you know about Danielle Walker’s cookbooks. Against All Grain is the first one. They can be purchased for Kindle as well.
Jamie says
I was diagnosed just over a year ago! It’s definitely been a HUGE change. Grocery shopping is hard, eating out is hard, its just all new and gluten is hidden in SO MANY things. For great baking recipes check out Paleo Running Momma….i’ve NEVER made anything from her site that didn’t turn out!! Iowa Girl Eats has an awesome gluten free breakfast casserole! Look up Gluten-free Peanut Butter Christmas Dream Bars….this was the first baking thing I made after my diagnoses and it was AMAZING. Make them this weekend! Use valentine instead of christmas!! I just know all your kids will love them!!! King Arthur one for one (Cheapest on amazon prime or thrive market) replacement flour is my favorite for baking. I use it in all my cookies, cakes, etc and have never had a problem! The only thing it hasn’t been great for is cinnamon rolls and pie crusts! The Defined Dish has some awesome gluten free recipes that all the kiddos will love in the kids section of her cookbook. I could go on and on and on! I’m so glad you all found out early and she didn’t have to suffer too long and hopefully she’ll avoid more issues later down the road!
Rebecca Jo Vincent says
OH MY WORD… ALL THE THINGS HAPPENING AT ONCE!!!! Bless your heart!!
So did you get a hysterectomy? I saw they told you that & then mentioned girly parts gone below… was that thrown in there too? Mercy lady – only by the grace of God do we make it through some days / months / seasons.
So glad that you’re now on the G-Free life for your girl. It’ll be an adjustment but like everything else, just become 2nd nature. Luckily, there’s so many new products that are G-free that will help a lot…. & that pic of her face. GOD LOVE HER!
I have a friend who is a marathon runner – she trains daily & is so healthy & she’s got Celiac Disease so extreme… so obviously, I know you know – but K is going to have a good healthy long life. Changes just have to be made.
Hugs to you all!!!
Ashley says
Do you have an Aldi grocery store! Their GF baking mixes and snacks are cheap and fantastic!
Brittany says
Thanks for sharing your families journey with this! Will you be sharing g-free recipes now? I would love that!
Laure says
Hi Shay! Thank you for sharing… I was a nanny to a little girl who had celiacs And now I feel like I know so much about it. I’m sure you already know but being really careful what even touches her skin is super important. Stickers, some glue, certain markers even have gluten?! Hair products, etc. Who knew?! A few things she still could have were fruity pebbles, Dr. pepper, vanilla and chocolate ice cream and certain restaurants were really good about not contaminating food. Wishing you all the best!
Kerri says
Hi…faithful blog follower here. First off, sorry to hear that you all had such a tough fall with your family having some medical things. I am 44 and currently undergoing all of the Celiac testing, have an endoscopy in the next few weeks. It’s interesting–that now at 44 because of a random blood test that my doctor ran, it came up. She said some people live with it for years and years and not realize. I was thinking when we were kids, noone was gluten free or even thinking about that. I would say the only symptoms that come to mind for me right now is the bloat. No matter how much I watch my eating, I work out 5x a week, I still have this constant bloat. I also have food allergies and my 11 year old daughter has lived with a dairy/nut allergy her whole life. I can seriously send you tips on how to navigate that, especially now as the kids get older and eating out, or going to starbucks with friends is a big part of their socialization as tweens. Happy that you all figured out what was going on, I am sorry that your dealing with it. But when my 11 year old get’s down about her allergies, I tell her that things could be worse. Thanks for your honestly and letting all your “blog friends” in on what your all going through.
Kim says
I would love some tips on navigating food allergies with older kids as they go with friends more to restaurants/starbucks etc. I have a 14 year old and an 8 year old with food allergies (nuts/seeds/legumes). It was definitely easier when they were with me all the time for meals and snacks!
Chrissy says
Glad you found the culprit! You have lots of great comments to go through here, I’ll just add a quick one. Skip all the fancy gf pastas, Ronzoni gf (yellow box) tastes just like regular pasta. The rotini is our fav. Oh, and when traveling to Europe I found it to be uber-accommodating. Sans gluten was everywhere;)
Jackie says
Oh Shay, I’m sending to much love and encouragement to Kensington and your whole family. What a strong kiddo you have! Sending you so many hugs as you continue to navigate this big change in your lives. XO
Jenny says
My daughter has been on a GF diet for the last 6 years! Thankfully, companies are making it easier and easier to be GF. There is an awesome brownie mix… you wouldn’t be able to tell it’s GF. So good! Red Robins has GF hamburger buns and they will fry their french fries in a separate fryer if you tell them she’s celiac! So I don’t know if Kensington could tolerate it or not… but instead of regular GF flour mixes. We actually use an Ancient Grain flour by Bob Red Mills, I think it’s called. I don’t think it’s been modified, so it seems to be just fine for my daughter. It isn’t grainy. Works about the same as regular flour… so much better than the GF stuff. A bite of a tortilla shell, and she thinks she’s dying… but this flour doesn’t bother her at all. Just a thought. Hang in there! It does get easier!
Lora says
The best resource for gluten and grain free baking, I think, is Danielle Walker from Against All Grain. I hope others have recommended her as well because she really is an invaluable resource.
Brooke says
You have such a sweet girl to want to share her story and to be thoughtful enough to want to share a picture to help others. We all know some parents have it worse but that doesn’t mean it isn’t still hard. And so much in that one week too. I would have been a mess. I’m so glad you were to get a diagnosis and help her.
Lisa Richardson says
Bless your heart! That is A LOT to deal with at one time. Way to go Kensington for being such a champ. You’re an amazing girlie! I’ve got no advise, because PTL we don’t have to deal with anything like this, but there are several women at my bible study who do. For that reason I periodically make some gluten free things. If you are using boxed gluten free items, be sure you try the Krusteaz GF coffee cake. It’s really delicious, and one of the ladies told me she couldn’t believe it was GF because it tasted like real food. I also know there are several brownie mixes that are good on the market. Unfortunately I don’t know which ones, because I had them at a tasting center for a blind tasted test/survey. So keep trying those until you find one?I’m sure this community will be a huge help and circle the wagons for support.
XOXO
http://www.coasttocoast2.com
Kristina H says
I can’t imagine there’s a momma reading this that wouldn’t feel your heartache or feel so proud of Kensington! What a sweetie pie she is!
Thankfully, this is something that has become so much easier to live in the world with. Grocery stores, restaurants, friends’ homes…. there is so much more education and products out there than there used to be. Praise God for that!
I am gluten free due to Hashimoto’s and of all the things I was so sad about, it was not being able to fully enjoy baking Christmas cookies with my kiddos. I mean, you can’t just bake them together and then not eat them! After several failed experiments, we now use Cup 4 Cup and you would never know!! I use it for everything!
Wishing you the gifts of discernment, wisdom, grace, peace, and good health as you embark on this new journey with your family! Thank you for sharing your story! ❤️
Debra says
Kensington is blessed to have such a supportive family. Check out the blog “Iowa Girl Eats”. She was diagnosed with Celiac several years ago and shares a lot of great information. Wishing you all the best.
Andrea says
Hi Shay,
Thanks for sharing Kensington’s story. You guys have undoubtedly saved another family from living with undiagnosed celiacs. I wanted to mention that there are some really great apps out there for scanning food at the grocery store. ‘Gluten free scanner’ is a good starting point. You just scan the barcode of foods and it will tell you yes or no for gluten content and cross contamination. It’s very reliable and saves some time searching ingredient lists. I work in nutrition and have many friends who swear by the app. You guys are an inspiration. Cheers!
Amanda says
I appreciate you sharing, I was diagnosed with celiac at age 20, but concern about my kids being diagnosed is definitely real.
King Arthur makes the best brownies, Mels monster cookies are amazing, and Udi’s makes pretty great muffins, buns, & baguettes!
A lot of dedicated gluten free bakeries also ship, so if you find a favorite you can stay stocked. The one near us (Dempseys in Little Rock) also provides the base for seasonal meals – stuffing, gravy mix, rolls etc for thanksgiving which takes some of the stress out of gluten free holiday prep!
Restaurants can be hard but I also have had so many good experiences where people went above and beyond to bring the manager out, explain the cooking set up, etc. They are usually very honest if they are concerned about contamination and haven’t had a problem if I break out my snacks then.
Eating has gotten to a point where it can definitely be inconvenient but not a huge stressor! I think the thing to keep a conversation going about is both feeling left out sometimes & practicing being assertive and knowing how to advocate for herself!
Praying, and thank you for sharing!
Rachel says
On the topic of gluten free baked goods not tasting great- if there is a “Nothing Bundt Cakes” near you, they make the BEST tasting gluten free vanilla bundt cake. I always thought gluten free desserts were awful, but it’s a winner.
Shelley says
Shay,
Will removing gluten from the other kids’ diets create a gluten intolerance in them? I know your priority is to keep K safe and healthy but I’m wondering if the doctors mentioned anything about that and if you could give us some info. Try baking with almond flour! Best gluten free flour IMO
Natalie says
Hi Shay,
I’m so sorry to hear Kensington has Celiac. My son and I were diagnosed about 9 years ago, and it was a huge adjustment for us. Though I’m not a food blogger ?, I love love love to cook and bake. All my friends know me for my meals and baked goods. Through trial and error and time, I’ve learned how to make delicious meals and baked goods. My favorite gf flour is Cup4Cup. I’ve tried them all. Does K have any issues with dairy? Often celiac and dairy issues go hand in hand. I have loads and loads of recipes I’ve found from all over the internet that I would be happy to share with you. Most recipes can be altered to make them GF. I make a weekly menu and don’t repeat any of them in a month (so you can tell I like variety!). Silly questions, but did you throw out your toaster? Did the doctor tell you to check shampoo, lotion, etc? Even some meds are not GF. A side note, I travel a lot and find its much easier to eat GF in Europe. Anyway, I would love to chat more about this as I love sharing tips that helped us adjust to going GF. Feel free to email me to ask any questions or if you’d like tried and true gf recipes. I will be praying for you as you all adjust. Blessings xo
Julia Krowiak says
Hey Shay,
I’m not sure you will see this but I was diagnosed at age 17 with Celiac disease (i’m 29 now). I am a huge foodie and it was a huge adjustment transitioning to a gluten free diet as a high school student. I have an incredibly supportive family who was really helpful and I managed to take my diagnosis and do something really wonderful with it. My diagnosis inspired me to study nutrition and pursue my MPH, I also now have a blog where I talk a lot about being gluten free. There are so many wonderful resources available and great gluten free websites!
My favorite gluten free flour is Cup 4 Cup from William’s Sonoma. Also, America’s Test Kitchen has some AMAZING gluten free recipes and recommendations. For bread, I love Coco Bakes (https://cocobakesla.com/) and Canyon Bakehouse Heritage Style (https://canyonglutenfree.com/) isn’t bad either for store bought. I also listed some of my FAVORITE gluten free products on my own blog (https://www.livingfromjtoz.com/8-gluten-free-products-i-loved-in-2019/).
Being gluten free can be hard, but it can be done and we live in a world with so many wonderful options available. I have no doubt Kensington will adjust to her diagnosis with stride and one day be a resource for others on how to navigate the gluten free world. Girl you have this! I am happy to answer ANY questions so please feel to reach out. Also, here is my blog post about being diagnoses, I hope this all helps!! (https://www.livingfromjtoz.com/my-life-as-a-gluten-free-foodie/)
Lauren Hampton says
I’m glad you figured it out and is feeling better! My mom is Celiac and my Dad has MS. He feels so much better since going GF about 10 years ago! When they first started out they loved Iowa Girl Eats (https://iowagirleats.com/) and still do. She has Celiac (I believe her first pregnancy triggered it) and I can’t recommend her recipes/outlook on the disease enough. It’s a lot but you’ll get the hang of it!
Grace says
So sorry to hear about K’s diagnosis!!! I recently had to go dairy free because my breastfed daughter has an intolerance and it has not been easy.
I don’t have much advice on gluten free life but I know you guys are big Disney people and wanted to recommend this blog for your next trip: https://www.fairytalefoodie.com/
Katie also has celiac’s and she’s a Disney food blogger, so her entire blog is a HUGE resource on how to eat gluten free around the parks!! I hope it is helpful!!
Elizabeth says
Shay, you need to get in touch with Alex Snodgrass from The Defined Dish!! I’m sure you already know who she is because she is local. Her sister Mada Leigh is also someone you should touch base with! madaleighblog@gmail.com
I’m so sorry for what you and your family have been going through but I know the light at the end of the tunnel is near! I will continue to pray for you all. XO – Elizabeth
Jen says
Oh, my heart just broke for you, reading about that whirlwind of things happening all at once. You must have felt like you were drowning. But you somehow kept your head above water, and you made it through. That’s some real mama bear strength right there. We (internet strangers!) are all proud of you!!
Le Ann Osborne says
Kensington is a beautiful little girl, inside and out! Praying for your family!
Michelle says
Many hugs and prayers for your family!
This lady cooks gluten free due to Celiac as well, not sure if it would help or not.
https://iowagirleats.com/
Catherine says
I just wanted to comment on the respectful way that you presented this blog post, both in terms of Kensington’s wishes and in describing how others may be experiencing difficult things too. It sounds like you have been dealing with so much, but with such grace. I wish you and your family the best during these challenges.
Jen says
What a scary thing for K and your family to go through! Thanks for always sharing, you will definitely help people out there and also looking forward to more gluten free options in your recipes!
Krista says
Wow – that is a lot! And it’s so ok to say that – yes it could always be worse, but that doesn’t lessen what you’re going through. My step-mom, step-sister and now her son have all been diagnosed with Celiac. My step-mom did a great job of “teaching” 🙂 all of us about contamination and all the things. She used to try and separate everything at family get together, but over time we’ve learned that grilling or smoking something and pairing it with sides that are GF is just easier. For the times that we do have gluten (most of the time bread for sandwiches, hamburgers or hot dogs in the summer) we put them all in one place/ one counter/ serving area, away from everything else. And everyone knows you go there LAST. Because that way, you don’t have to bug everyone with, don’t use that spoon in that thing, or you touched those chips you can’t touch anything else, etc etc. The other thing she did, was she has metal and silicon serving utensils no wood – and everyone knows the blue ones are exclusively for GF. It sounds like a lot – but once everyone is “trained” as she likes to say – it’s really no big deal. Example: Thanksgiving – I always make green bean casserole, but I also bring plain ones. Good luck, you’re doing such a great job handling it all 🙂
Kristen says
One thing that my cousin does when her daughter goes to a birthday party is she brings a gluten free cupcake so her daughter doesn’t have to miss out on the cake. I thought that was a really good idea 🙂
Leslie S says
Bless you and Kensington for sharing your journey to help others! She is quite a girl! Thank you for being brave and sharing your lives as you feel lead, I’ve been praying for Kensington since you first mentioned she had a health issue. It’s good to see her looking healthy and happy here! Lifted prayers for Andrew, Madeley and Ashby too as y’all navigate this season, and for you mama!
My daughters both have eczema, and the derm has recommended reducing gluten to see if that improves the skin. After reading this, I’m wondering if having a blood test for them might be a first step in solving their problems?.
I can’t wait to try some of your GF recipes! You’ve got this Shay, what a testimony of faith and perseverance your family has to share with the world!
XO from South Carolina
Lindsey says
Hi! I don’t know you personally but I love all your posts. I too have an autoimmune disease and it’s so frustrating. I am currently doing the Whole30 program which is amazing for people with autoimmune diseases. It’s an elimination diet. Going through this I have found a couple good items that I would love to recommend in case you haven’t heard of them. Tessamae’s salad dressings are super good and are dairy, sugar, and gluten free. Also, if you love soy sauce try coconut aminos. Tastes super similar and will meet your Asian food craving. I wish y’all all the best as I know how tough this is.
Best wishes!
Lindsey says
Hi Shay! Sending love to you & to sweet Kensington. My hands down FAVORITE grain-free dessert recipes are from Sweet Laurel Bakery. She just came out with a cookbook last year (it’s on Amazon for $20!!) & she has a blog as well over at http://blog.sweetlaurel.com. Her cakes are almond flour based & have simple ingredients that you can buy at Costco or Target or any grocery store. A couple of my go-to food bloggers for other gluten-free recipes are:
http://www.ambitiouskitchen.com
http://www.rachlmansfield.com
Wishing you all the best on this journey! There’s a steep learning curve adjusting to new dietary needs but I promise it gets easier. You’ll be a pro in no time!!
Rebecca L Brittain says
WOW! I am so glad this was caught for Kensington. Poor thing. What a nightmare to find out the hard way. Praise God it’s over. I am gluten free and have the autoimmune disease Hashimoto’s Thyroiditis. I don’t have any reaction to gluten, but eliminated it years before I ended up with Hashimoto’s. I have a lot of recipes on my blog that are Paleo or Whole 30 (thus GF) if you’re ever interested to try any of them. http://www.everypiecefits.com
I haven’t read the book Wheat Belly, but my brother in law did and he immediately cut out gluten because the book was so impactful! And yes, there are a lot of cross contaminated things you’d NEVER think about. It’s crazy! French fries are a huge culprit because of the grease being used to fry other breaded things. Something to think about when at a restaurant or fast food place!
Casey says
Jillian Harris (The Bachelorette) has a couple of cousins & aunt that are celiac. They have a great IG account to follow, @acoupleofceliacs
Lindsay says
Hi Shay – my Grandma had Celiac disease and we used to make her these cookies all the time. I thought they were delicious!
https://www.allrecipes.com/recipe/11441/gluten-free-peanut-butter-cookies/
I am imagining a Mix and Match Mama Gluten Free cookbook in the future 🙂
You are doing a great job … I am sure it feels like you are in the trenches of it all but from an outsiders perspective it seems like you are the BEST advocate for your kids.
Marika Spediacci says
Thank you for sharing this post. What a strong girl! So glad the doctors were able to finally figure it out. My best friend is gluten free and so I feel like I’ve gained so much knowledge over the years. Eating out is always the toughest because you hope they are not cross contaminating. The item on the menu could say gluten free but then be cross contaminated! I think Trader Joe’s is still an amazing grocery store for gluten free foods! They have chocolate cupcakes that are gluten free, pancake mix, lots of frozen rice packets! I also follow an Instagram account called: @traderjoesglutenfree make sure you follow for ideas!
Corbie says
Crying a bit over here. I just can’t believe everything going on in your world these last few months! Thank God K is diagnosed, healthy, and on the road to recovery. Thank you for the details, specifics, etc… what a help this is and super information to know and share with others. K is so brave to share, what an amazing girl she is! Continued prayer for your family. You are a warrior momma and wife Shay. Love your spirit and the way you tackle things head on. My husband is GF- supposed to be at least. We found out through genetic testing that he has an intolerance to G from both a maternal and paternal gene making it extra noticeable. He is always feeling bad and you have convinced me its time to get more testing done to get the the bottom this and not just band-aid. Just like you said- its important to treat whats happening before something else starts because of it. Love that your recipes will be GF- I have been cooking that way for years. Again, thank you for your honesty and helping others. Love reading your readers comments too; what a great tribe of ladies here. xoxo
Abigail says
Hi- My daughter was just officially diagnosed on Tuesday, although her blood work came back in early December and was positive for Celiac. My husband is a Type-1 diabetic so we are fairly certain the trait came from him. All first degree relatives need to be tested though. My other kids tested negative, but they will need to be tested every two years.
Other advice we got- when going out to eat, say you have a wheat allergy. Restaurants take that much more seriously then asking about gluten. It is important to ask about cross contamination and if the restaurant doesn’t seem clear on what that means, either ask to speak to a manager who may be more knowledgeable, or don’t eat there.
Try the app Find me Gluten Free.
We are not a GF household and it is going just fine. My doctor said we do not need new pots and pans or utensils. She does not buy into the idea that gluten is sticky and can’t be cleaned off. She did recommend getting a new toaster and panini press and we keep gluten to one area of the kitchen.
Also- my daughter didn’t have any symptoms. She lost weight at sleep away camp and couldn’t seem to gain it back. I was concerned, so her doctor recommended a blood test just to rule anything medical out. We were shocked that it came back positive for Celiac.
Finally- we are focusing on what she can eat, not what is off limits. I am using Gwyneth Paltrow’s It’s All Good cookbook. It happens to be almost entirely GF and we are really enjoying the recipes.
I look forward to trying your recipes!
Heidi says
Follow Iowa Girl Eats for all gluten free recipes. She is a food blogger and was diagnosed with celiac disease years back and now all recipes are gluten free and SO good. Highly recommend.
Paige E says
Wow, Mama you guys have been through some stuff! A great thing is that you guys caught this now, before K’s digestive tract gets badly damaged. I was not diagnosed until I was in my 30s and it took so long for me to begin healing. I was plagued with digestive issues, hives etc my whole life but back then, unless you were losing weight or malnourished, they didn’t look at Celiac. I do think the household going g-free is the best thing. Its just too hard to keep things separate like baking pans, cleaning sponges etc. I finally bit the bullet and even though its just me right now with Celiac, we don’t do gluten at my house unless its individually packaged, like for lunches at school for the kids. I also get my kids tested every few years so we can catch it early if it hits. We really do live in an amazing time with lots of dietary options. Hang in there, Mama. It will get easier. PS I don’t like almost any baked good thats g-free. Its just such a disappointment when I try to bake with g-free ingredients and the stuff is just yuck, I would rather just not eat it. I try to stick to things like flourless chocolate cake, thats already g-free for birthdays and stuff.
Ashley says
Another plug for The Defined Dish as well! I just picked up the cookbook and I’m obsessed! I also follow No Crumbs Left (Teri Turner) and love her and her cookbook too! Their instagram pages and recipes are fantastic and they’re so likeable! Good luck Shay and gosh I definitely understand how it feels when things pile up all at once. I’m currently 24 wks pregnant with my first and just found out Tuesday that my mom’s cancer markers went up so she’s starting a new medicine Feb 12th and we’re praying this will help. I’m so overwhelmed because I want to be happy for baby and good things to look forward to but at the same time I can’t help but feel like I can’t be happy because of my mom. It’s devastating. A verse that’s been helping me a ton the last few days and keeps popping up is Jeremiah 29:11: “For I know the plans I have for you, declares the Lord, plans to prosper you not to harm you, plans to give you hope and a future.” It’s helped a lot so hope it will help you as well <3 Praying for you guys and so glad you got to the bottom of K's issue!
Mallory says
I have tried many gluten free flour substitutes over the years (multiple family members are gf), and THE BEST cup for cup replacement is hands down Aunties. They’re a small company based in Austin, I believe, and I order from amazon. Truly tastes the bests, and it doesn’t change how the recipe turns out at all. Hopefully it will help with the baking! ❤️
Auntie’s Gluten Free Gourmet All- Purpose Flour Blend – 60 oz. https://www.amazon.com/dp/B06XDWWK3S/ref=cm_sw_r_cp_api_i_OvXkEbQX09CZY
Jen says
My goodness, so many things all at once! I’ve been praying for you when you mentioned there were multiple health issues going on in your family, and my prayers will continue. Thanks so much for sharing – just from the comments you are helping so many people, and so many suggestions for you as well!
Andrea says
There is so much I could say, but I don’t want to take focus away from my number one gf tip because it will change your life! Pamela’s gf chocolate cake mix is AMAZING! I top it with Martha Stewart’s basic vanilla buttercream, but you could obviously do anything. This cake tastes so good, you would never guess it was gf! My non gf people are obsessed with it too! So happy you have a diagnosis for your sweet K and that she is feeling better!
Amanda @ That Inspired Chick says
Girlfriend, that is a LOT in five days. So glad Kensington is handling it all so well. Much better than I would I’m sure! xoxo
That Inspired Chick
Amy says
I can’t imagine having all of that happen within a 5 day period – overwhelming, to say the least! My heart goes out to K, but so glad she got correctly diagnosed! I don’t have experience with Celiac but I know that inflammation is a big component of any disease and keeping that under control is important. A friend of mine has Hashimotos/thyroid issues and another has Lupus and a slew of other autoimmune issues. They both swear by these raw, whole food products by PURE and I’ve gotten my family on them. Mangosteen is a juice that is great for inflammation (one ounce a day has helped immensely with my 4 year old’s allergies) and organic sulfur has worked wonders for inflammation, too. Just a couple of recommendations if you’re looking for something to help with that for her. (They are both GF.) Livepure.com is where we get them. Thank you for sharing her story – no doubt it will help so many going through the same thing!
Claire says
Hi, Shay! Sending lots of love to you and Kensington and all the Shulls… change is a family experience and can be tough on everyone! I don’t have any useful info on celiac specifically, but highly recommend the Trader Joe’s GF bagels (best toasted!) and Bird’s Eye 100% Vegetable Pastas(which do not appear to contain gluten). They have really nailed it on the texture and taste and it definitely helps satisfy that carb craving… doesn’t hurt that they only take 4 minutes to make in the microwave either! (For what it’s worth, my 2 y.o. daughter—a “selective” eater, if you will—eats these without complaint and has no idea they aren’t real “skettis”.)
Keisha Dawson says
You all have experienced so much in such a short amount of time! I’m so thankful that you were able to find out what was going on with K! Prayers for each of you in your sweet family!
Angela Kimbrough says
Bless her and you. I have celiac’s and so does one child. I will say at first it is really hard. As the mom you will get mad– when you go to bitrhday parties and she can have what the others do. When somone tells you it does not have gluten in it and then it really does cause they did not realize it would “bother” you so much. The biggest thing I have to say is allow yourself to be mad and in a way to greive. Life just changed in a big way and unless they have this issue in their life others will not understand. Then move on and become the bigest supportor! Find replacements for all the stuff she likes the most first- and always be prepared. carry food everywhere you go cause just in case. I found mine with the exact symptoms she had and I understand. I find a lot of the groceries I buy online, and at Earth Fare. And I stick to plain clean meat and produce a lot. IT WILL GET EASIER! I will add this to my prayers for ya’ll.
Pam says
Danielle Walker Against All Grains has some great cookbooks. Even include baking treats and yummies. I definitely recommend her cookbooks and her website.
Emily says
I’m so happy Kensington is doing better, how scary that must have been to not know what was going on exactly. She is so very brave to share her story.
Always thinking of the Shull family and sending you positivity.
Erin says
Thanks for sharing, what a journey your family has been on!! Check out IowaGirlEats.com, she has celiac and has a son with a dairy allergy, and posts a lot of recipes! You’ve probably already done this, but make sure to check any lotions, soaps, sunscreen etc., some have gluten!
Mac says
Praying for your family is you get through this difficult season, thank you for being a positive light for your readers despite all the challenges you’ve been facing. (Also, if you haven’t heard of it already, LEAP testing might help Andrew.)
Leslie Johnson says
You’re doing a great job!
Have any of the doctors you’ve seen recommended seeing a Registered Dietician? Specifically one who deals mainly with Celiac patients? RD’s can be a great resource for managing this and have been trained in nutritional needs.
Kathleen Drummond says
I have been gluten free for almost 2 years now (and dairy and egg free) thanks to weird autoimmune issues. Pinterest has been my saving grace for baking!! So many people have great recipes for almost anything you could think of- some not so great but what can ya do? Taking those inflammatory foods out of my diet has helped so much with pain, brain fog, and energy!
Sandi says
Andrew sounds very much like my husband. He eats super healthy, exercises regularly, gets plenty of sleep and sees his doctor yearly. With four kids, there are some prepackaged things we have in the house for their lunches, but for the most part, we eat whole, real food. About six years ago, tired of traditional medicine, he sought out a chiropractor that also works with functional medicine. He has felt great since then! So much of the medical world is governed by pharmaceutical companies. Your bloodwork has to show extremely high or low in different categories for you to obtain a prescription. But what if (for example) your thyroid number is elevated but not enough to be treated with medicine. The thyroid still needs to be dealt with. The same with any other bloodwork number that is not in the ideal range but not problematic enough for treatment. That’s where the functional medicine doctor has helped because he actually gives advice and listens. There are wonderful doctors out there, but many are too overworked to read studies on treatments that are unconventional. Hope Andrew finds answers! And I’ve enjoyed reading website recommendations from others that read your blog.
Eowyn says
Hi, Shay! I’ve been gluten free for almost 4 years now because of an autoimmune thyroid issue called Hashimoto’s. Danielle Walker has amazing recipes – her cake recipes in her Celebrations cookbook are amazing! It takes a lot of time and adjustment, but eventually it becomes second nature. You’ve got this!
Sara says
Wow!!! So much going on for your sweet family! I just want to say how incredibly brave I think Kensington is for sharing her pics with the hope of helping others! Such a sweetheart! And thank you for always being open and sharing your lived with us! Sending prayers and love ❤️
Taylor says
Sweet, sweet Kensington!! Bless her heart. I’ll be praying for all of you guys as you manage your new normal!
Eowyn says
Oh, and I should add that finding Happy Camper’s gf bread was the best discovery! Their raisin cinnamon bread is perfect toasted – it doesn’t taste like all of the other nasty gf bread out there!
Jenny Waters says
I’m so sorry for Kensington. The transition to gluten-free is not easy, but I can tell you it’s worth it! My husband has 3 autoimmune diseases. We changed to an AIP diet which eliminates gluten and other inflammatory foods. Two years later and he’s off the immune suppressant drugs including methotrexate. In the process, we figured out my teenage daughter was sensitive to gluten. For years doctors told us she had eczema but none of their treatments worked. She got off gluten and her skin cleared up. If she accidentally eats it, she gets bubbly skin. She has now become an expert gluten-free baker.
Once you adjust, food without gluten can be so delicious. Not the fake gluten-free substitutes but real foods. We all feel so much better without gluten. My two older daughters gave it up with us and love how they feel.
We need more people educated on gluten-free, because there is still a stigma that we are high maintenance. Prayers for an easy transition. There are lots of great restaurants in DFW that are gluten friendly!
Courtney says
I am so sorry to hear this but so glad you have an answer and have it under control. My mother was diagnosed about 4 years ago and she has also had rheumatoid arthritis (another autoimmune) for approximately 20 years. She has recently discovered cup for cup flour and LOVES it along with their pie crust. Central Market and Trader Joes have some wonderful GF options – the Trader Joes pumpkin bread, mac and cheese and raisin bread are all so good! Unrefined bakery (several locations in DFW) is a gluten free bakery that is wonderful.
Deb says
Oh Shay, I don’t have any knowledge in Celiac so I can’t offer advice or suggestions. What I do know is that with your strength and determination, you and your family will be living their best Gluten free life! And what a lovely and compassionate daughter you’ve raised. It takes a lot of courage to share her struggles with the world!
Kellie says
Oh my goodness!!! That is so scary!!! One of my kiddos was diagnosed at 18 months which was so crazy early! Thankful we figured it out though! We were not going to go completely gluten free in our house, because it was easy to separate her stuff. Now we’ve started to ease into it because she has no outward symptoms if she happens to get exposed(we know this because she ate a brownie bite at dance class around Christmas.)
We have discovered that she gets huge ulcers in her mouth and I think she gets exposed more now that she’s older.
All that being said- I’ll be excited to see your new recipes! I use to be sad that I couldn’t make them because of gluten!
Prayers for your family and for this new journey!!!
Teresa says
I can’t believe that week! You seem to handle everything with such grace. I read all the recommendations and the only one I think I would add would be the Fix It and Forget It cookbooks, Stephanie makes everything she cooks GF. https://www.ayearofslowcooking.com/2005/11/gluten-free-stuff.html
Ellen A Brown says
I’m so sorry she is going through this, but am so glad you know the answer.
Check out Iowa Girl Eats and Amy’s Healthy Baking…..lots of good recipes that I use and I don’t ‘need’ to!
Good luck K!
Ellen
Tina Riddell says
You’re doing great already and will totally figure the rest out too!! My hubby and son both have Celiac Disease so I’ve learned a few things along the way — Scharr and Glutino products are the best tasting. Meier and Aldi have great gf products. Restaurants can be super tricky with cross-contamination but Red Robin, Noodles & Co, PF Chang’s and Culver’s do a pretty good job (as in, my boys haven’t gotten sick there yet). Glutenfreemall.com has fun treats like mozzarella sticks and donuts! Good luck and let me know if you ever want to chat more about what works for us.
Lindsay says
What a week, so sorry to hear you had a tough fall!!
First, I KNEW your skin was looking extra amazing!!!! I’ve been going through what products you use thinking I need to try! ha. It’s absolutely from cutting gluten out.
I am gluten intolerant as is my spouse (fun fact- Our first date we went to eat and he casually said “you’ll think this is weird but I don’t eat gluten…” to which we instantly connected on the fact that we both are intolerant!!) I can honestly say, I rarely miss gluten. I know i have it easier as I don’t react nearly as bad as sweet K did. I do get skin rash/irritation and tummy troubles like no other.
Now days, more and more places have gluten free options thankfully, and I think that it will continue to grow as more and more people are diagnosed. The way the US processes food is just not good. I love to bake and I still make all the same things, just with 1 to 1 flour. Girl scout cookies do not compare, the gf ones are gross ha. But some brands I love:
Canyon Bakehouse
Kim and Jake’s rolls
Banza pasta
B Free (Not every product but the rolls are good!)
Flax 4 life- their chocolate muffins are SO Good, like brownies!
Trader Joes has a ton of gf. In the fall, their pumpkin muffin/bread mix!! You’d never know it was gf. Add some frosting to make it a cupcake. I buy TONS of boxes of this ha.
Trader joes also has brownie mix!! & Stuffing in the fall/holiday season.
Krusteaz has some good gf mixes too- pancakes, brownie mix, blueberry muffin mix, honey cornbread..
For brownies, I find that they just fall apart easier. Try using parchment paper or foil or something to help you lift it out of the pan to cut. Always let them cool or they really fall apart.
I was thinking what a challenge with having a food blog, but then I thought, it’s all God’s plan. Maybe all along you’ve had this blog with God knowing one day how much you’d help others through this celiac diagnosis, and how much others can help your family here. What a blessing.
excited for Gluten free recipes to come!!! XO
Emily says
Wow, I hope I can handle every hurdle in life as gracefully and courageously as you and sweet Kensington!
Anne Brown says
I’m so sorry Kensington, but so glad they were able to figure out the problem to get you better!! I eat gluten free to help manage my autoimmune conditions, so I’ve found a lot of websites that I highly recommend that make delicious food that you truly would never know is GF. I follow Paleo usually, so most of the recipes I use use Paleo flours and such. I make most of my own gluten free food, I rarely buy it premade because most has so many additives and junk in it. Here are my recommendations:
Against All Grain (Danielle Walker)- everything she does is wonderful.
Zenbelly.com – a trained chef who had to go gluten free and Paleo, so she converts all her favorite recipes. I really can’t tell you how delicious her food is. Her breads, pizza crusts, crackers are to die for. Her cookbooks, Zenbelly and Paleo Soups and Stews are fantastic. The soup one has a ton of bread/cracker/biscuit recipes. My friends prefer the naan I make from her book over regular gluteny naan!
Well Fed by Melissa Joulwan- easy weeknight meals and ideas, everything I’ve made has been awesome. You mentioned meatballs, hers are the best. She has a good website and cookbooks.
For desserts that are fancier, Clean Eating With A Dirty Mind, and The Urban Poser.
Good luck, autoimmune diseases are so difficult and discouraging sometimes, we’re pulling for you guys as you figure out a new lifestyle!
Shari says
Thank you for being so transparent and sharing what’s happening with your sweet family! I’m a daily reader and remember when you shared that K had poison ivy, who would have known it would be that disease! I am positive that your story will help others. Prayers always coming your way!
Kayleigh Quinn says
Hi Shay! I have had Crohn’s disease for 16 years and was diagnosed with Celiac disease 5 years ago. I found out because I drastically lost 20 pounds and had the same rashes as Kensington on my abdomen, legs, and back. We thought it was a reaction to the sun (I was a nanny and spent a lot of time at the beach), but I got tested after mentioning it to my GI and it’s made all the difference in my life.
You are such a wonderful mother to support her in all the ways you mentioned. I will say, it took me a long time to figure out how to cook for myself when I was first diagnosed. I gave myself a grace period of a year to figure out how to cook and bake and it forced me to become a healthier person in the long run. Thank goodness for cookbooks, books, and Pinterest. Keep on trucking! I have no doubt your family will handle this with continued grace!
Jules says
So sorry to hear about all the health struggles for your family lately. Thank you for being brave enough to share about it. Life isn’t always rainbows, kitties, and sunshine. But having support of family and friends (and internet strangers!) helps make those darker days a bit brighter. Praying for Kensington and the rest of your family and healthier days ahead!
Serena Welch says
I don’t even know where to start. ALL THE FEELS with this post! You guys have been hit with A LOT! Thank you for sharing so much and a huge thank you to Kensington for being so brave to share with us as well.
While I don’t have Celiac (have been tested 5 times) I do have a gluten sensitivity. So, I eat GF and also dairy free (to reduce inflammation which causes the bloating, etc.) It’s a struggle but it’s worth it not to feel terrible. The stomach pain/bloating is so painful that being mindful of my diet is really the only thing that helps. We do most of our grocery shopping at Whole Foods, Thrive Market (check it out if you aren’t familiar; worth the annual fee) and get a few things from Trader Joe’s. The days of being able to grocery shop at one store are long gone. Also, do you have the Shipt app? While, we don’t use it that often it does come in handy for Publix and Target runs and also saves us from stopping at one more place.
I know you have a million comments to read through but I just had to comment. Sending lots of prayers to the Shull Family during this time of transition and healing. It’s been a tough season but you’re an awesome mama and I know if anyone can handle whipping up some new recipes, it’s you.
Thanks again to you both and I also hope you’re feeling better everyday. Female surgery is no joke.
Katie says
Wow! So much going on in such a short time is overwhelming! I am gluten free for non-celiac reasons, but will say that with so many diets being free of gluten these days the cookbooks and food options are really great! There are so many Keto recipes for baked goods that I have tried because they are gluten free and they Have been awesome! Peaceloveandlowcarb has tons of gluten free recipes! Hang in there! It will become second nature eventually!
Noelle says
Be careful if you go to a pizza place or a bakery. Even though they have gluten free options on the menu the cooking utensils, pots and pans will be contaminated. So they may have a gluten free cookie but it will be baked on a gluten contaminated cookie sheet! Flour in a pizza place is constantly in the air so those might be out. Unless you can find one with a completely gluten free kitchen!
Olivia says
Follow Monique from Ambitious Kitchen blog, she posts so many AMAZING gluten free recipes (and just had a sweet baby boy). I’ll be thinking of your family, Shay. Good luck in this transition season❤️
Andrea says
Oh my gosh Shay, I can’t believe you were going through SO MANY things at once!
Also can’t believe how red poor K was?
I don’t know anything about Celiac disease…always thought it showed up as more of an intestinal issue, but it turns out we have a family friend who has the disease and It affects his skin as well.
Thank you for sharing and I hope your family has the healthiest possible year!
Lindsay @ Lindsay's Sweet World says
Oh Shay, I don’t even know where to start. I’m so so sorry about all of the things going on in your lives right now. That is a lot for one family to handle. I’m so glad that you shared with us so we can pray for you. The more prayers the better, right? I hope y’all get all of the answers you need, and quickly. And thank you for always being so transparent and trusting with us, your blogging community. You’re a true inspiration. Much love to you! XO
Susie Harrold says
Shay, I’m so sorry ya’ll have been put through the ringer. Please tell Kensington I will be praying for her and that I think she is an amazing young lady. So thankful you have answers. You’ve got this!
Dana says
On a light note: Macarons. You’re going to have to perfect the baking of the challenging macaron! These are the gold standard cookie among our family members with celiac and other autoimmune disorders.
You’ve handled so much these last few months! It’s inspirational.
Kim says
I just wanted to say that I am praying for sweet Kensington and you. It will get better, I promise! It takes about a year to get adjusted but actually now I think some of the dishes taste better than regular. I was diagnosed with Celiac about six years ago. I had been diagnosed with several autoimmune disorders over the years but never really knew why. Like Kensington, I would get rashes and everyone would say it was eczema and to take oatmeal baths. Which have gluten in them! I went for a regular check up and they did blood work. I got a call in the afternoon and was told by my physician to go to hospital that my blood levels were critically low. I had a blood transfusion and I was severely anemic. They were sure I had cancer or was bleeding somewhere internally. Lots of test…. until the last test they did a biopsy. I had Celiac but because it had gone on for 46 years that I was completely depleted of all vitamins. They said that I was not retaining any of my nutrients. I immediately went GF and now six years later I have no more rashes and I am not anemic. I still have the other auto immune diseases because it will not undo the damage that was previously done but it helped to stop further complications. I am so very happy that you have learned at a young age for Kensington before other complication can arise.
Here are some of my favorite things:
King Arthur Flour & Mixes
Krusteaz – Cinnamon Cake & Cornbread Mix
McCormick Taco Seasoning GF
Weber Seasonings
Trader Joe’s GF Spaghetti
Hungry Jack Confetti Pancake Mix GF
Mission “Thin” Corn Tortillas (the thin makes the difference in tacos, enchiladas, and fajitas
Udi’s bread
Udi’s pizza crust
Amy’s had several frozen food choices that taste good
Barilla Lasagna Noodles
Boar’s Head Meats
King Arthur has a Lemon Bliss Cake recipe that is amazing
When eating out I always ask the manager about what is gluten free then I ask about cross contamination and if fryers are shared. If we are going to a restaurant I always call ahead so I can have a plan before. Always let the server know. There are so many places now that have gluten free options.
I look forward to all of your great new recipes coming in the future. I love your blog! I’ll keep praying for your sweet family!
Laura says
Being gluten free is a lot easier now than it used to be! I had to go gluten free for a period of time 15 years ago, and at that time Whole Foods only had 1-2 SMALL freezer sections or shelf sections of gluten free. Now, Betty Crocker even has boxes of GF cookies/brownie mix. So I understand the frustration as I remember crying in the car home from the store. Europe is far more along in understanding the Celiac life than here in the States, but so much progress has been made. So don’t lose hope! Restaurants have also gotten so much better, also cross contamination still can be an issue. At the time, PF Changs was the only place that had a dedicated GF menu. Now, it’s much more common for restaurants to denote GF items.
I found that rice pasta tasted much better than the GF corn pasta. My mom also experimented with xantham gum in baking.
Disney is AMAZING with food allergies, by the way. It was so awesome to go to a restaurant there and have the chef come out and tell me he could make me anything on the menu GF.
Excited for some GF recipes! While I’m not on a GF diet anymore, it’s nice to avoid it when I can.
Carrie says
I have a GI disorder and food allergies. At different times I need to go off of gluten per doctor request. We have several friends with Celiac. None of those families eliminate gluten for the whole family. I don’t eliminate peanuts and dairy from my whole family either, I just don’t eat them. That said, oat flour is such an easy swap for muffins. In fact for muffins or banana bread that is all I now use. You will really want to make sure they are gluten free oats. To make the oat flour just put oats in a processor. I use oats in my turkey meatloaf vs breadcrumbs. Chocolatecoveredkatie.com is excellent for some yummy gluten free treats. Bobos also makes great gluten free things. Simple Mills is another great brand. But as a family we really live a clean and often plant based diet. It’s often easy to avoid gluten that way.
Beth K says
You should go to https://iowagirleats.com/about/ and follow or possibly contact Kristin. She has always had a food blog, but was diagnosed with Celiac several years ago and now shares wonderful GF recipes that she makes for her family! She would be a great resource for you and your family. Prayers and hugs sent from Iowa!
Sarah says
Shay, try Smitten Kitchen consummate cookies, using Bobs Red Mill GF baking AP flour. My gluten free and non-GF friends love them! There is also a salted peanut bitter cookie recipe on this site that is GF and really yummy!
Thanks for sharing Kensington’s story – she’s a strong girl and I hope her story helps others!
Jayne says
My daughter is gluten free as well (she was older — I empathize with you dealing with that in the age of birthday parties, etc). This is a delicious chocolate cake – I substituted Kahlua for brandy because it’s what I had.
https://www.foodnetwork.com/recipes/patrick-and-gina-neely/ginas-flourless-chocolate-cake-recipe-1917544
Bob’s Red Mill paleo flour blend is our favorite baking substitute – no weird ingredients.
I echo the recommendation to follow Against All Grain and any whole 30 recipes.
We find it easier to just make food that naturally doesn’t have gluten most of the time because constantly trying to substitute ingredients is exhausting. We save the g-free crackers, bread, pasta, etc for social occasions rather than daily meals. I make seasoning blends to keep in the cabinet to replace packets of taco seasoning, etc. It will all be second nature soon – hang in there!
Addison says
Hi Shay! I am so sorry Kensington had to go through that! I have been gluten free for almost 4 years and it has been the biggest blessing in disguise. I now feel amazing, my skin has cleared up, and multiple health issues have subsided. I run a completely gluten free food blog (www.organicallyaddison.com)!
I love that you’re transitioning your entire household to being gluten free. Not only is it so much healthier, but having that support for K is huge!!! Prayers for you all!
Pam Saltmarsh says
Shay! Buy/order all of Danielle Walker’s cookbooks! Today! Lots of love!!
Cynthia says
Love the blog. Your little Kensington is just adorable and so mature. Like her Mama she is so caring and giving of self. Her desire to help another through her trials is beautiful.
I follow another blogger who found later in life she too has Celiac. She has wonderful recipes on her site; Iowa Girl Eats. I have enjoyed her recipes. Maybe this will help. I can see from above comments you have many to choose from. Thought I would add to the list.
I too am a Christian. Take care!
Abbey says
Such a hard season for you guys! So glad you’ve gotten answers and can make this change for your girl! Have you talked to an allergist about removing gluten from your whole family? You can actually create an allergy for the rest of you by doing this! I only know this because one of my sons has a severe peanut allergy and we have been told we need to keep the other kids/us eating peanuts to keep us safe. Our allergist has recommended a “peanut safe” not “peanut free” house. We also agree that a peanut safe house does a better job of preparing our son for the real world. Grains are an important and healthy food for most of us! ❤️
Karyl says
You’re getting inundated with comments so I’ll keep mine short, but my husband was just reading that there are three types of substances (and probably people, too): fragile, not fragile, and anti-fragile. Fragile things break under force. Things that are not fragile are unaffected by force. Things that are anti-fragile become even stronger than before when they meet an outside force. Praying your family continues to be anti-fragile!
Lauren May says
Long time reader, but haven’t commented. I was diagnosed with Celiac(on biopsy) this past May at 33 years old. It has been a truly life changing diagnosis for me, my husband and my 2 daughters.
I was sick and tired all of the time. Since having my 2nd daughter 3 1/2 years ago. Apparently Celiac (where you’ve previously been asymptomatic) can be triggered by stress or pregnancy etc.
8 months in and it has become our new normal. Still difficult. But our normal.
Cooking has become easier. Baking….getting there. Bob’s Red Mill 1:1 Baking Flour is my favorite so far. I’ve read that people have also loved buying individual flours and combining them theirselves to create their own baking flour.
Make sure if you store flour in any plastic containers that you throw them out and replace, don’t just wash. Gluten is like glue and micro scratches in the plastic hold on to it.
Colleyville has a great gluten free bakery! And Unrefined Bakery in Dallas has been good as well. They even sell stuffing/dressing around the holidays.
I have lots more to add, but this comment would be way too long! Will be thinking about you guys and I’m selfishly excited for some gluten free recipes!
Autumn Baker says
I didn’t read all the comments but if you haven’t heard of https://confessionsofafitfoodie.com/ you should check her blog out! Great GF recipes and tips.
Lynette says
Oh Shay, what a difficult time for all of you. Thank you to you and Kensington for sharing this information to help others. I have been GF for over two years. At first it seemed difficult, but it becomes second nature after awhile. For baked goods I find it easiest to use one of the 1-1 GF flours (King Arthur or Costco). I have an almond allergy too, so all of the recipes with almond flour are out for me. My other tip is to not focus on trying to replicate everything you used to eat in a GF version. Focus more on things that are naturally GF. Things like risotto and other rice dishes, Mexican food using corn tortillas rather than flour, quinoa dishes, oatmeal and oat based granola (with GF oats) for breakfast cereal, etc. GF oats are also good for baking things like cookies, breads, pancakes… Also buckwheat is gluten free and good for a hearty pancake. I make lots of smoothies and eat roll-ups using deli turkey rolled around cheese, spinach, avocado, etc. Nuts and popcorn are good snacks. Rx bars and Lara bars are great. In restaurants, if they don’t have GF buns, I often just order a chicken sandwich or burger with no bun. Fewer carbs feels healthier anyway. I have found that Thai restaurants are always good about preparing things gluten free (no soy sauce) if you ask. Most of the GF pizza I have had is pretty good, pasta is hit or miss. Barilla’s GF pasta is one of the best. I look forward to hearing about what works for your family.
Abby says
Hi! First time commenting because this post hit so close to home. I have a 9 year old daughter that went in for a check-up, the doctor told her she hadn’t grown at all in over a year. She’s always been petite and the smallest one in her class so we just always thought that she was small. She did a blood test to test for Celiac since one of the symptoms is failure to thrive/grow. A friend had suggested going Gluten-free since her daughter was actually positive for Celiac. We’ve been doing our best since mid-September at going mostly Gluten-free and she has grown over an inch since then! Suddenly, all her other symptoms like stomach aches went away and her focus on her school work improved. My guess is that she’s gluten intolerant, though I’m going to press the doctor to get another test for her to make sure. We do allow low-gluten items (ie. Rice Krispies, sourdough bread that’s fermented for more than 30 hrs, etc..) which I read was ok for gluten intolerance.
But as far as recommendations, Chex, Cheerios, and (believe it or not) Lucky Charms are the cereal we eat now as they are all GF. Trader Joes has gluten free breads and bagels, but we also love Canyon Ranch (or Mountain) GF Bread. Costco has a GF cheese pizza that we get an add some extra cheese and toppings. Several pizza places all have GF option. Glutino has a great GF english muffin. We’ve been using corn tortillas or crunchy tacos for taco/burrito night, but still looking for a good GF Flour tortilla as my girl is missing her quesadillas.
Could you please post other suggestions from people about GF products! That would be so helpful!
Lorelei Boyett says
Reach out to Erin @cottonstem she has two daughters with Celiac.
Praying for you all!! ❤️
Lisa H. says
Long time reader, first time commenter!
My 11 year old daughter was diagnosed this summer with Celiac disease. She had unusual symptoms as well…horrible headaches mainly. Her gluten free diet has been life changing for her. I look forward to following along for helpful tips and recipes. Thank you for sharing. Glad your daughter is doing better!
Danielle says
It was so brave of you to share! Thank you. I can relate to being overwhelmed with a diagnosis and the diet changes that come with it. Six years ago I was diagnosed with two autoimmune diseases (I was only 28!) and I was told to eliminate gluten, soy and dairy from my diet. I’ve eliminated all of those foods for almost six years now …it’s amazing how a diet cleanup can really help. In the meantime, both of my kids showed signs of gastrointestinal upset and skin rashes from consuming dairy. So they’re off dairy, which has really impacted their ability to be “normal” like their friends. The hardest part is birthday parties where there’s a lot of dairy foods (mainly pizza) and cake. One tip is that I make my kids eat a snack before the party and then bring along pizza that is suitable for them (no cheese, no milk in crust) and then we have a vegan bakery close by so they pick out their own special treat to enjoy while everyone else has cake. Sometimes, families know and they accommodate by making dairy free foods but I know this isn’t easy for everyone. So that’s one tip that I’ve found helpful. It’s a challenge. They’re 6 and 2 so we try and explain to them the importance of taking care of your body and listening to it when it tells you it doesn’t feel well.
On another note, I’ve had very good luck working with nutritionist Jessica Flanigan out of CA. I’m in PA, but we Skype and she’s worked with over 1500 patients with autoimmune diseases clean up there gut. I’ve had fantastic results and have been able to introduce foods (like tomato, pepper) that once gave me issues. She’s incredibly knowledgeable and very down to Earth. You can google her to learn more.
I feel like I could write a book about all I’ve experienced trying to navigate these health issues. Good for you for getting to the bottom of it and I wish you and your family the best!
I enjoy your posts (especially the book reviews!) and I’m burrowing reading The Things We Cannot Say right now!
Hope you have a great day!
Vicky T says
Thank you for you and your family to be brave and sharing your story with others. I have never been allergic to anything before in my life and I am 50 yrs old. Last year I developed a rash and then it grew worse where my arms were so red, swollen and itchy all the time. They were so swollen it hurt to bend my arms to wash my hair! I went to 2 dermatologists and neither really helped me because they either wanted to give me a shot or steroid cream. Long story short, I have food allergies which includes gluten. I found out by taking a blood test. My body takes at least 1-2 days to react to the food so it was initially difficulty to determine what was causing my reactions. I am now seeing a traditional Chinese medicine doctor and through acupuncture and herbs he is giving me, he is slowly healing my liver. I believe it is a combination of today’s foods and the environment that is causing us to be so ill. In addition, I was on birth control for years, not knowing it may have an negative effect on my liver. Good book I’ve read is Rain Barrel Effect by Stephen Cabral. When things settle down, an option you may want to consider is the Einkorn products in Young Living. Some who are allergic to gluten are able to eat the Einkorn products. Praying for strength and healing over you and your sweet family. It’s a journey.
Kelly says
I’m sorry to hear that y’all have been going through this but thankful that you’ve shared your story in the hopes it will help others. Praying for your entire family!
Lauren says
Sending hugs to you and your family! When my son (now 10 months old) was only 7 days old we got the call that he likely had PKU, a rare genetic metabolic disorder which doesn’t allow his body to normally metabolize phenylalanine which is in protein. When found during the newborn screen and treated (formula/special shakes for life and a special diet) he’ll live a completely normal happy life. When not treated, children with PKU can end up with severe impairments and brain damage. The diagnosis was shocking. Only 1 in 12,000 babies have this per year. We were devastated. Thankfully he’s being treated and we manage it well and will raise him to live a life where he isn’t ashamed of PKU and educates others about it. I say this because there’s so many foods with protein and PKUers can’t typically have eggs, meat, fish and a lot of times gluten. We buy a lot of gluten free items and low protein items when gluten free ones have too much protein. It’s because of celiac disease and dairy allergies that my little guy has so many more options at the grocery store than just via medical food companies where a box of pasta can run you $16. My advice is this – find gluten free items she loves and jot them all down. Trader Joe’s and Whole Foods have awesome awesome selections! And educate her teachers, friends, etc. all about it. Everything will be totally OK ? you’re an amazing mom and your strength dealing with special needs has helped me be a momma to our son with his special need.
Tracie says
So sorry to hear that, Shay. I was diagnosed with celiac in 2011. While it’s a blessing to have a condition that can be treated with diet alone, it defintiely is not always easy. The social aspect of food and eating is hard because there are just a lot of things that I feel left out of. I love that your whole household is going GF to support K. I know some families choose not to do so because the cost of GF can be a challenge, but I have no idea how they prevent cross contamination! I am excited that this means your recipes will all be GF now though.
LIndy says
Wow, that’s a lot for you to deal with and process! I admire your energy and positivity, and I’ll pray for your cute family! Just a quick tip- not sure if you know about The food blog “Iowa Girl Eats”, but the author Kristin found out she had celiac disease and tells her story and has tons of great gluten free recipes. She published an ebook, “Gluten-Free for Beginners: 30 Day Meal Plan” and “Guide for Gluten-Free Success” for those who are newly diagnosed with Celiac Disease or a gluten-sensitivity. You might want to check it out! xo
Jessica says
Hi Shay! I’ve been g-free due to Hashimoto’s for a few years now. It is a steep learning curve, but it gets easier. It’s also much easier now that restaurants are more accommodating and there are a ton of gluten free products available now. Be careful for restaurants that are gluten friendly, not gluten free, as there will likely be cross contamination. Make sure any fried foods at a restaurant not only have g-free breading but are also fried in a dedicated fryer. I would recommend looking into a product like Apex Energetic’s GlutenFlam, which will help when Kensington is inevitably accidentally glutened.
michelle says
Hello there! Sorry you’re going through this but happy you’ve found the root cause. Wanted to encourage you to look at your shampoo and personal care product labels as gluten is often in shampoo, body wash, and lotions. Good luck and look forward to hearing how K continues to thrive.
Mary says
Oh my goodness Shay, I’m so sorry for all of the health issues your family has been hit with recently. I want to give you some encouragement about Celiac. I was diagnosed with Celiac when I was 15 (I’m 32 now), and while there is definitely a steep learning curve at the beginning, it gets soooo much easier!!! At this point, I know like the back of my hand which foods/ingredients/products etc contain gluten and which ones are safe. I remember feeling like my Celiac disease became a huge part of my identity when I was first diagnosed, and now I hardly ever think about it. (Also, funny story – I remember people telling me my skin was glowing when I first went gf! The skin benefits are for real!) I have seen huge improvements in the availability and quality of gf products since my diagnosis thanks to the gf diet fad. King Arthur has great gf flours and baking mixes, including an AMAZING brownie mix! Pamela’s is another good brand for gf flours and mixes. I think you can find both brands at pretty much any grocery store. Stay away from Bob’s Red Mill – super grainy and protein bar-y ;). The only thing that I still find super difficult to make a gf version of is pastry dough, although the Whole Foods brand gf pie crust is pretty good and can be remolded for things like baked brie. You will get the hang of this in no time! Kensington is in such good hands and so lucky to have an amazing mom to help her through all of this 🙂
Diana Holguin says
Please tell your sweet Kensington thank you for being so brave and sharing her story with a bunch of strangers. I know that can’t be easy. This post has so much good information. My husband had ulcerative colitis and ended up having surgery to get his colon removed about 10 years ago. There wasn’t much info about GF diets back then, but knowing what we know now, a GF diet definitely could have helped with his flare-ups. I also a 6 year old and 3 year old who are both very picky eaters…I always have mom guilt about what they eat, but I feel like cooking healthy meals is often so hard/time consuming/overwhelming for this working mom. Thank you Shulls for sharing your story and experience! I look forward to eating healthier with all of you! 🙂
Stacey Emison says
Hi Shay! That is so much to handle! I will be keeping your sweet family in my prayers. I will say I have two friends with severe gluten allergies and cup 4 cup is the absolute best flour to use! I follow my normal recipe for baking and replace my regular flour with cup 4 cup and it works and taste good. I hope this helps. I also know there are quiet a few apps that you can download so you can scan ingredients when you are shopping and see if they habe gluten or not.
Christa says
So sorry to hear this. Kensington seems like such a sweet girl and I hate the thought of her dealing with something so serious, at such a young age. Praying for her and for your family as you navigate this new season. Praise God that she has been cleared of other autoimmune diseases. I am eager to read more about this and look forward to trying some yummy gluten free recipes!
God Bless!
Suzanne says
What a rough season for your family! My husband has the same issue and I love to bake and I’ve found some recipes that we all really love. Also, Trader Joe’s has some GF cupcakes my kids love even though they don’t need GF products.
Here is a recipe for a great chocolate cake:
https://www.melskitchencafe.com/decadent-chocolate-cake/
https://www.melskitchencafe.com/decadent-chocolate-cake/
https://www.melskitchencafe.com/easy-pumpkin-chocolate-chip-blender-muffins/
Don’t want to overwhelm you with too many. Good luck.
Meg says
Iowa Girl Eats is a FANTASTIC food blog written by someone with celiac! I also found The Defined Dish (I think she’s local to you?) on IG and just bought her cookbook and it’s wonderful!
Julie says
I love making baked goods from Sweet Laurel by Laurel Gallucci and Claire Thomas. Laurel has an autoimmune condition. They own a bakery in California that is grain free. They are grain free desserts that my family really enjoy. I’m the one that is gluten free but they like everything that I’ve made. The classic chocolate chip cookies (pg 92) is easy to make and Kensington might find it fun to make them. The Double Chocolate Brownies (p 112) are also amazing. The cookbook itself is beautiful and I enjoy baking again. I love just going through the cookbook and trying recipes. The ingredients are super easy to find as well. My next goal is to make a gluten free ice cream cone.
Sera Lewan says
Hi Shay. Our son has Crohns Disease. Diagnosed at the age of 11. My husband and I were so upside down and worried and well continue to worry for him but things are leveling off. He is now on humira. We are gluten free along with some other things such as nuts, seeds, lactose, and popcorn. It takes time to adjust but you can do it and sounds like you are. Check out this website. It is awesome. It is economical and sells a lot of the ancient grains and some pretty yummy boxed goods.
https://www.swansonvitamins.com/
Also there are some gluten free facebook groups that offer advice and great recipes.
Lifting you and your family up in prayer.
Anna says
I’m so sorry to hear how you and your family have struggled! My friend has celiac and she taught me to be careful about baking too soon before she visits (if this sounds like she was being bossy or something, she wasn’t. She was explaining all the things she has to watch out for and I took it to heart). This is because flour can linger in the air for a while, so that is something to consider when visiting bakeries or friends’ houses. So thankful for modern medicine that helps us treat these issues and get them under control!
Jennifer says
We use almond flour to sub for most of our baking. It’s definitely more dense but you can make it fluffier by separating the eggs. Elena’s Pantry has some good recipes. And the Simple Mills box mixes are great – 6 or less ingredients. Pricey but worth it! The pumpkin mix is my daughter’s favorite!
Alli Von Dorn says
I had noticed that most of your Trader Joe’s picks were GF lately and thought it was a coincidence but was excited bc I am allergic as well!
King Arthur’s GF brownie mix is the best – better than regular brownies – if you want a treat for K before you find a good recipe.
My recommendation to you is go to your local Whole Foods and make it your best friend. They have amazing, healthy, labeled foods. You can trust what you are getting there.
Courtney G says
Oh my goodness! You and your family have been through a lot this season. Praying for you all!
The natural nurturer on Instagram is a great source for gluten free recipes. Her green smoothie muffins and chocolate butternut squash muffins are wonderful and my picky toddler approves.
Gretchen Dall says
Oh Shay, so sorry to hear, but thankful you have some answers. I have been gf for years and it is a process, one that included grief for me (crusty bread is really hard to say goodbye to). I know baking for your family is one way you show your love. Excited to see the things you come up with in the coming months. I have never really taken the deep dive into gf baking as my family all still eats it, but this simple mini muffin recipe is by far the best thing I have ever made that is gf… perfect high protein mini muffins- and doesn’t use any flour substitute- just egg, honey, banana and peanut butter… you honestly will swear they contain flour! https://spoonuniversity.com/recipe/gluten-free-muffins-peanut-butter-banana xxoo Go Cats! Gretchen
Jennifer says
Oh Kensington, you are so so brave!!! What a special soul God gave to her! I know nothing about gluten free life, but I sure am sending you prayers and encouragement as you navigate this new lifestyle! Thank you Kensington for being so vulnerable and sharing your story and kuddos to you momma for being a rockstar!
Kim says
Thank you and Kensington and your whole family for being willing to share so openly in the hopes of helping others. I will keep you all in my prayers as you navigate these issues. My kiddos don’t have celiac but they have food allergies, and I will never forget the first time I went to the grocery store after the diagnosis. It was so overwhelming and felt like there were whole aisles that were full of deadly poisons now. It does get easier though, and I wish you all the best as you get to your new normal.
shawnna Griffin says
hey girl- I am like you were I don’t know a lot about celiac diease. I will be praying for you and your family. He has a plan for your life and you know he loves you very much.
Cathy says
Check out Jillian Harris’ cookbook, they have many gf recipes or adaptations to make recipes gf. She also had an aunt or cousin that has celiac and has a blog (maybe you can find it through Jillan’s site), I am sure that is very helpful.
Katy says
I was going to recommend this as well! The website is called A Couple of Celiacs- she’s on instagram as well. Her recipes are AMAZING!!
Emma says
Hi Shay, my daughter was diagnosed at 2 years old with coeliac (we’re in Australia – we spell it differently ?) after 8 weeks of vomiting each night, terrible diarrhoea and losing 2kg (she only weighed 10kg to start)! I was beside myself and like you, grateful that it wasn’t something more serious but also so sad that she will have this for the rest of her life. Thankfully my girl is tough as nails, like I suspect Kensington is as well, and she adapted to this new change without batting an eyelid. I’m actually relieved that she was diagnosed so young because she just thinks GF food is normal (& lets be honest, some of it is hideous. We bought GF croissants the other day and the main ingredient must be the glue they give preschoolers…).
Another website you might like to follow is ‘Gluten Free on a shoestring’. You get daily recipes for free and if you want, can buy her cookbook (I haven’t because it’s American so I can’t access a lot of the brands she uses). ‘Gluten free sugar free’ on Instagram is also great because often to try and make foods palatable, they fill them with sugar which isn’t great.
My other tip is to always take food with you when you go out. We don’t eat out much as it is just too hard with cross contamination in our area. You can always tell immediately if the restaurant you are at actually understands what coeliac is. A few simple questions about whether or not they use a shared fryer for chips etc, will let you know if they are aware. It makes life a bit harder in that regard but we’re just used to it now. My daughter knows that if we are out and she misses out on something, I will make it up to her later with a treat.
For birthday parties, I still stay with her (she’s only 5) so I can supervise her food while we are there and I take a lunchbox filled with treats for her to have instead of the party food. I also take a GF cupcake and have a few lollies in my bag so I can swap things out of her lolly bag so she doesn’t miss out.
Halloween is becoming more of a thing here and for the last two years, we’ve had the deal that whatever I can’t see the ingredients of, I’ll swap her 1-for-1 with something we know is GF.
When travelling, because she is still young and can be a bit fussy, I take food with me. We go to Fiji in August and I’m planning on taking a cheap toaster/sandwich press with me and her favourite GF cereals, bread, snacks with me.
With coeliac disease, what I have learnt is that it is all just about being prepared. I cried when we were told she had it, and I still get really frustrated at times because while I know it could be so much worse, it complicates our lives daily.
I’m so glad Kensington is feeling better. I hope she continues to do so. Best of luck.
Heather says
Thanks so much for posting this. I have several AI issues and have been gluten free for several years. It’s great to read everyone’s advice and encouragement in the comments. I would also agree that eating whole food as much as possible will be best for your family. There are a lot of processed GF food out there and are great for an occasional treat, but whole food is healthiest. Also, I know many people who cut out gluten substitute with other brands of GF flours to make cookies, cakes and breads. As much as possible I try to stay away from that. For sandwiches I eat lettuce wraps and for pizza I make a lentil crust. I was part of an online autoimmune educational program run by an MD, who also specialized in functional medicine. Those in the group were tested for food intolerances and many of the people in the group who had been substituting with other flours ended up testing intolerant to the main ingredient in the flour, like almond flour. Most likely it was because they were eating it in most meals for years. So I try to keep a lot of variety in my diet and not over-consume any one thing, which can be hard when GF. Thanks again for sharing and I pray as you struggle with all of these health issues you experience God’s presence and power in a new way and that Kensington’s story and your new recipes help many others.
Audrey says
Our towns coffee shop makes these gluten free brownies. They are amazing, too!! The girl who bakes them uses pecan flour. Here is their recipe! https://www.watchtastemakers.com/oliver-farm-artisan-oils/2018/10/28/recipe-pecan-flour-brownie
Since Kensington loves baking, y’all should do a cookbook together featuring your gluten free lifestyle!! So thankful it’s not something more serious – though any lifestyle change is tough on everyone!!!!
Deb says
Hi Shay…all the comments reflect the best info and support for your family for GF. Do note that Danielle Walker’s books are really great. She has had a very serious setback with hospitalizations so if you’re are prone to “overthinking the future or anxiety” just checkout her recipes rather than her recent medical journey. Wishing you all the best…
SC says
I will chime in with the people recommending Bob’s Red Mill 1-for-1 flour. I have been GF for 11 years, and it is hands-down the best cost efficient option…I use it for everything and interchangeably in recipes that call for regular flour, and have been super impressed. I order it directly from their website in bulk and they ship for free over a certain amount ($75 I think?). The other great option is Cup 4 Cup (from Thomas Keller, the king of bakeries), which is also wonderful but more expensive and can be harder to find.
Jennifer Thull says
Thank goodness you found out! I was diagnosed 11 years ago & when I stopped eating gluten, I almost immediately improved & when I accidentally “get glutened” the reaction is almost immediate too. But, thankfully you will get a lot of support & learn A LOT, but what helped me was gfreefoodie.com. (She’s local to me.) I printed her lists of what’s considered gluten & what has gluten in it & took them to the grocery store with me for a long time. Soy sauce surprised me the most, but now I use Liquid Amino’s (so i can have Chinese food at home) & shelled sunflower seeds- like salad topping- are coated with wheat!!! It’s very hard in the beginning, but you’ll all get the hang of it. As for baking gluten free I’m really good at it & use Bob’s Red Mill All Purpose gluten free flour & substitute it for regular flour straight across. I’m sure you’re keeping your ears open for gluten free events. G Free Foodie has done events here showcasing gluten free things at Whole Foods & another local grocery store. Hang in there, as you know she’ll get better, & you will all adjust to the different tastes & textures. Just let me know if you find a good flour tortilla substitute!
Janet Teeter says
Oh my goodness, I can’t imagine having all of those diagnoses coming at you all at once. On the gluten free info…the very first baker to win cupcake wars using gluten free recipes has a gluten free bakery here in the Portland area, but more importantly…she has a cookbook with lots of yummy baked goods. I guarantee her pastries/cakes do NOT taste like a protein bar. The cookbook is called “Sweet Cravings…” by Kyra Bussanich. Her story about being a gluten free baker may interest you as well. Praying your whole family has a medically boring 2020.
Tammy says
Half Baked Harvest posted a recipe today for Avocado Fudge Brownies that are gluten free. They look amazing!
Robyn says
Thanks for sharing an update on Kesington. I’m glad you found answers but it is difficult to change your entire family’s diet. I don’t know if you’ve ever checked out iowagirleats.com. She has Celiac and has great recipes! I make her recipes all the time!
Eileen Bradshaw says
Shay,
Thankful that you have a diagnosis and “it” is treatable. I’m learning more each day how processed food are not good for our bodies… that we should eat more pure foods- like God intended.
Thank you for sharing… praying for you and your family.
MIchelle says
A great site is Iowa Girl Eats. She didn’t find out she had the disease until she was much older. One question, is it okay for the other family members eat gluten free. I have heard you should not go gluten free unless you have a problem with gluten
Kristy Moore says
Hi Shay! Thanks for sharing your story with us. ? I’d recommend checking out my friends blog: Cut Cooking. Since her son was diagnosed Celiac she’s been redesigning recipes to be gluten free. Theo their cool thing is that she’s developed a gluten free flour mix that transfers over 1:1.
Good luck and praying for you guys!
Kelly says
Hi there! I posted on your Insta too. But, one thing I thought about after reading your post is the pickling process…like pickles and jalapeños in some salsas can contain gluten. I kept getting sick after eating salsa and couldn’t figure out why. I usually steer towards the natural pico BC it’s usually a safe bet. ?
I’m so sorry you are going through all of this. Anytime the health of your family is impacted…it’s a BIG deal! Thanks for sharing her story to help others! ?
Shelly says
I have a friend with severe celiac and she actually has to even test the food at restaurants that claim to be gluten free with a little device and testing strips. While some of the restaurant items are gluten free, the cross contamination can evidently still happen if they are not using a gluten free kitchen, etc. Bless K’s heart…I’m so glad you guys got some answers. Hoping 2020 is much healthier for the Shulls!
Kristen says
Sending you and your family so many prayers! Thank you for sharing. You have such a strong girl!! ❤️❤️
Lindsay D. says
I’m so sorry for everything your family has been going through! You will all be in my prayers!! I’m giving Kensington a big hug from Colorado…I’m so proud of her! What a beautiful brave girl she is!!
Christa says
I’m not usually one of those “this spoke to my heart” kind of people, but today, your post regarding Kensington’s Celiac diagnosis SPOKE TO MY HEART. One of my very best friends found out that her 4 year old daughter is highly suspected to have Celiac’s. She’s going in for testing tomorrow and hopefully soon they will have an answer. She didn’t experience any of Kensington’s symptoms, or the “norm” symptoms either, but rather just the feeling of always being full and not wanting to eat, loss of appetite, and as a result, being very small for her age. Hopefully the test will put an end to the guessing of what ever it could be and the beginning of a solution. Good luck and cannot wait to see the GF recipes that come out of your kitchen!
Beth says
Just a heads up that some people with Celiac Disease can also react to oats even if they are certified gluten free. I am one of those unfortunate people. I kept having off and on symptoms after going completely gluten free. It turned out to be oats. I did research and some people’s immune systems react to the protein in oats just like it does to gluten. If she has any flares and you can’t pinpoint the cause, keep in mind oats. It sounds like you have done quite a bit of research and are doing great transitioning to gluten free! There are so many more products than even 9 years ago when I was diagnosed.
Dawn M Engle says
So Sorry to hear this Shay! God Bless sweet Kensington! Go and Follow https://eatwellwithsari.com/ not only is she totally adorable, but she posts a lot of g-free recipes and her g-free https://eatwellwithsari.com/recipes/fudgey-avocado-chocolate-brownies-gf/ are AMAZING!!! We are not g-free (but try!) and these are the ONLY brownies I make – we LOVE them!!! She has plenty of other g-free sweets that the baker in you will fall in love with! Sending you all love….
Kelsey says
Congratulations on reaching a diagnosis. It’s scary and hard, but it’s worth it! I promise it gets better from here. Celiac also runs in my family, with my diagnosis coming when I was 20. Eleven years later, and I barely remember life with gluten. It’s a learning curve for sure, but the world is learning along with you, and it’s SO much easier to have celiac in 2020 than it was in 2010. I could write you a book of advice, but I’ll keep it short with a recommendation to find a GF or Allergen Expo. They travel the country and they’re awesome. I always walk away feeling like there truly is a corner of the world just for me. And the next time you’re in NYC, check out Senza Gluten and Modern Bread and Bagel. There’s a ton of dedicated GF places here, but those are my favorites. Good luck!
cara zimmer says
Shay, thinking and praying for your family, I know how overwhelming it is. Our oldest has a severe peanut allergy, sending her off to college has been SO hard. With her allergy and the many food allergies my husband has, I totally know what you’re going though. One of my fave cooking blogs is Iowa Girl Eats, her recipes are SO amazing! And bonus, I got to meet her and her family in Vail while we were on vacation!! Hugs and prayers to you all…
Kristen says
My mom was diagnosed with Celiac in 2011 and the doctor recommended a book for her and it had 3 columns of symptoms and if you had a certain amount from each you probably had Celiac and should be tested. I had all but one of the symptoms so I went GF without being tested. I dropped 30 pounds over the next few months and actually started sleeping through the night and just felt a million times better overall. Every year it gets easier because more companies are making GF products and more restaurants are offering menus.
Canyon Bakehouse Bread lines and burger buns are amazing. Trader Joes GF Pie Crust is awesome. Cup 4 Cup flour is also really good–the best one I’ve tried. Namaste is a close second. Making baked goods now is really really really hard. Nothing ever turns out as good as I think it will. Bread is dense and harder to eat after day one. Brownies and cake are crumbly and don’t stay together. And frankly, if you eat too much Xantham Gum, it can lead to lot of gas or time in the bathroom for a lot of people.
A few really random things that either I or friends of mine that are also GF have found out the hard way–IHOP puts pancake batter in their eggs. A friend ordered eggs because she had to go there with her boss and thought that would be the only safe option. She missed her client meeting after that because of the pancake batter. At the time it wasn’t disclosed on the menu and the waitress didn’t mention it. It was until she was sick and called later that day and found out. Reese’s PB cups are GF, but the holiday shapes are not. Hershey’s/Hershey’s Special Dark/Mr. Goodbar full size candy bars should all be GF, but the minis are not. I’ve been buying them for holidays for years and last year found out that the reason I felt off after eating them was they aren’t GF. I never had a full blown reaction like if I ate a piece of bread, but definitely felt off.
Beth l says
I am not one to comment but I feel so led to share that you must read medical medium books. Please find him on Instagram and read his celery juice book. He explains celiac disease so well In his books And is healing health problems world wide . doctors are shocked by how his methods work and he has personally healed me. Start with 1. Celery juice book and 2.thyroid healing book.
will be praying for your sweet family. <3
Emily R says
Bless you and your whole family for everything yall have been hit with at once. I was diagnosed with celiac disease in 2009…quite the adjustment for sure, but it gets easier with time. I would suggest calling restaurants ahead of time at the beginning to find out if they offer gluten free options, if their staff is trained, if the kitchen is 100% gluten free…Many items they serve might be gluten free – but are subject to cross contamination – the french fries are fried in the same fryer as onion rings, the hamburger patty is grilled/cooked on the same surface where the gluten buns are toasted…flour and corn tortillas are combined, etc. Make sure you get a new toaster, throw away any wooden spatulas, cutting boards and anything porous that gluten could adhere to. Also need to throw out any butter, peanut butter, jelly…where a knife/fork/spoon has been dipped into it that has previously touched bread that isn’t gluten free. I’m local in TX like you, and Sprinkles has a gluten free cupcake and cookie K can get for when she has birthday parties to attend so she won’t feel left out. Unrefined bakery is a gluten-free, soy-free, non-GMO and organic bakery that has breads, muffins, cupcakes, cakes…Nothing Bundt Cakes also has a gluten-free bundt. Nut Thins are great gluten-free crackers. Canyon Bakehouse 7-grain bread is really good. I have gluten free cookbooks and books from when I was first diagnosed – I am local and I would be more than happy to send them to you-please reach out if you would like to take a look at them. Thank you for spreading the awareness and Kensington for her bravery of sharing her story. Love the blog and wish you and your family the best.
Kim says
Shay, I am so sorry your family is going through this. Celiacs runs in my family too. My youngest fortunately is just gluten sensitive. It does make cooking a challenge…and baking! I am not sure about Kensington, but my Katie loves baked goods! I highly recommend King Arthur’s one-for-one and their recipes. It takes a lot of experimentation, but our brownies and cookies are starting to taste better and better. Best of luck, and be patient, it takes time!
J says
Someone may have already said this, but I’m a fan of Ambitious Kitchen and Smitten Kitchen’s recipes (both are websites/blogs), both have lots of gluten free options!
Misty Maslanka says
Danielle Walker and all of her recipes are solid gold in the grain free/gluten free department!
Julie says
I have been gluten free for 5 years. I was diagnosed with an autoimmune disease and also tested for celiac and one can lead to the other. I do not have celiac but have been eating gluten free because I feel so much better. Lexi’s Clean Kitchen, Skinny Taste, and Iowa Girl Eats are my favorite blogs for recipes. Sending blessings your way as you navigate this new course!
Jaren says
Shay, I will be praying that y’all get the answers you need to make this an easy transition. All these comments are AH-MAZING! Wow!! What an awesome little community on here! You are raising some brave little girls too!
Julie says
BRANDS/FOOD I like:
Canyon Bakehouse Breads (Mountain White in freezer section I especially like) Tip: TOAST BREAD (ANY bread) whenever possible! Makes it better.
Freschetta GF pizzas
Pamela’s Products
Goodie Girl cookies
Simple Mills crackers and cookies
Enjoy Life chocolate morsels and cookies
Siete Foods ( tortilla chips and then their tortillas that are in freezer case)
King Arthur products
Cup 4 Cup Flour
Better Batter Flour
Authentic Foods Flours/Mixes
Barilla, Ronzoni, Heartland Pastas (Heartland-Walmart)
KATZ PRODUCTS- Fantastic donuts, bread crumbs, and more)
FAVORITE FOOD BLOGS:
IOWA GIRL EATS
AGAINST ALL GRAIN
GF ON A SHOESTRING
WHAT THE FORK
TEXANERIN
CHOCOLATE COVERED KATIE
ELANAS PANTRY
TONS of fabulous recipes on these blogs and on other blogs people named in the comments!
*A great book I’ve used to bake birthday cakes from is Cake Doctor Bakes Gluten Free by Anne Byrne. Her recipes start with the Betty Crocker cake mixes or brownie mix. I’ve only done the cakes, but almost all of them have come out VERY well. The yellow cupcakes are really good and I freeze some to have on hand to pull out for birthday parties and other occasions. LOTS of different cakes options to choose from in this book.
Hope some of these help! My son was diagnosed in 2006 with celiac at age 2 1/2. It was crazy being handed this diagnosis at the time. My heart goes out to all of you during this adjustment period. It is hard and pretty mind-blowing, especially at first, but it does get better, easier. You guys are going to do great. But wow have y’all had a LOT to deal with in a short period. So much love and prayers going out to you all, God Bless!
Janet says
Oh my gosh…..that’s a lot to handle, let alone in 5 days! So glad you have such a strong support system of family and friends with you each step of the way.
I, personally, don’t have family that don’t eat gluten, but, was a tutor/nanny for a boy that was. Things have come a long way and there are so many more items available than even just a few years ago. He would break out after just eating a little bit of gluten as well. Pizza was probably one of the things he missed the most. Have you tried cauliflower crust pizza? We get one from Costco that is already made and is so good.
It sounds like things are calming down at your house and I pray things only get easier for all of you. Has Andrew had surgery yet?
Thanks for sharing and I’m sure all of your fans will have lots of fun recipes to share with you.
God Bless.
Katy says
Thank you for sharing this! I’m so sorry you have been going through all of this. It sounds incredibly overwhelming!
My 11 year old son’s best friend has celiac and his mom does an amazing job managing it. She wants to make sure he’s never left out so he has even come out to eat with us at different restaurants and she will just run him over a sub from a local sandwich place that does a great job not cross contaminating their gluten free food! Anytime he comes over or if they go to a party or someplace, he brings a small cooler with snacks/meals so he doesn’t have to worry or she will run something over to our house! He has his own soap in his backpack (I bought that kind for our house now).
Good luck adjusting to this new lifestyle! She’s lucky to have you as a mom!
Karie says
Hi Shay!
My 13 year old daughter Bryn was diagnosed with celiac disease when she was 4. The best tips I can give are…
1. Contact teacher and send in treats that can be stored in the classroom just in case there is a birthday treat or reward in class.
2. When going to a birthday party contact parents about what they are serving so you can bring GF versions to match the party food. I always pack extra goodies for any outing.
3. Keep GF granola bars in backpack in case of emergency
4. We have a few chain restaurants in town that have a dedicated GF menu. We always speak to the chef and usually request the same waiter to make things easier. Going out to eat is difficult but Bryn’s favorite is PF Chang’s
5. Fast food….Wendy’s has a dedicated fryer for their French Fries. Only place we trust for fries. Chili and baked potato are also GF
6. Some of Bryn’s favorite GF products are Barilla GF pasta, Purdue Naturals GF tenders, Snyder’s GF pretzels, Lays Stacks, Good Thins rice crackers, Skinny Pop, Glutino Chocolate Vanilla cream cookies, Schaer Ciabatta Rolls, and Canyon Bakehouse bread.
We replaced all kitchen appliances, cookware, and dishes to make things easier. We are completely GF in the home. I love to cook and read , just like you. Trust me it might take some trial and error, but you will come up with great GF recipes. It is stressful at first, but it will get easier. We do a lot of cooking together. Good luck!!
Karie says
Just thought of a few more things….
Bryn’s friends find this GF lifestyle super awesome. Probably because I have treats in abundance on hand. I always have Udis pizza crusts in the freezer so the girls can make homemade pizza when they are hanging at our house. Another good option is a nacho bar for when friends are over. I make a lot of bars and sweet treats with Chex cereal. Muddy Buddies and s’mores bars are always in the refrigerator. Another big hit is almond milk smoothies and homemade ice cream sandwiches. It helps to be overstocked in the pantry and freezer because an occasion always pops up. I try to dress things up with cute paper goods and containers to make things a little extra special.
Denise says
We are at the other end of the age spectrum being diagnosed with Celiac. My husband was 76 when he was diagnosed last year! His “gastro” symptoms literally came on suddenly and would disappear as suddenly. This went on for a few years. I was cooking the same things so no difference in diet to trigger a reaction. Finally it was happening often enough that I insisted he see a gastroenterologist. In passing the gastro said it could be a gluten allergy to which I glibly said “the new IN disease”. Simple blood test came back positive but for positive diagnosis, an endoscopy.
It’s the hidden gluten that is troublesome. I have an app on my phone that I can scan a bar code and it tells me if it contains gluten or not. This is a lifesaver! Initially it was overwhelming changing over. Now it’s just the way it is. My husband isn’t so sensitive that cross contamination appears to be a problem but in restaurants when we are assured that items are gluten free and he gets a reaction, I get angry. This is not a joke nor a fad.
Best to all the Shulls!
Susy says
My very favorite!
1 to 1 Bob’s Red Mill Flour
You’ll never know the substitution!
Nothing compares! No more gritty substitutions.
Someday tour the ‘mill’ in Portland, OR! A.MA.ZING!
Diana says
Hey Shay! Sorry you’re going through all this, but glad it’s figured out.
I have a good friend who is g-free and two things I make for her & would eat with her anytime as someone who still eats gluten:
1) Banza pasta (made out of chickpeas, very yum) – really solid sub I think
2) For dessert – I bake a lot and got into the habit of making her fudge candy. She missed brownies and it’s very fun & easy to make & customize. Main ingredients are GF icing & condensed milk. You can really customize this based on your mood too- add nuts, mint or vanilla extracts, etc.
Ally says
I’m so sorry to hear! It can be so overwhelming in the beginning (for both of you). I have had a wheat allergy for over 10 years and it does get easier. Check out Clean Monday Meals on Instagram…she has celiac and has an amazing gf cinnamon roll recipe. Also check out Meaningful Eats- she also has celiac and has amazing recipes for gf pizza crust, cookies, rolls, etc. Hang in there, it will get easier and thanks for sharing!
Nancy says
Just wanted to say I hope you know you awesome you are! And I’m so constantly amazed at Kensington’s maturity and kind heart!! Praying for you all!
Heidi Mui says
Not sure if anyone has mentioned her but the blog Iowa Girl Eats is now gluten free and great food recipes/advice to follow!
Jeanie says
I’m so glad that Kensington is doing well. And I’m very impressed with your documentation. If it hasn’t already, I’m sure this new eating challenge will be run-of-the-mill for you. How you handled all those medical issues in less than a week seems like a miracle to me!
Danielle says
I feel you Momma! My daughter has Celiac. She too is not typical… no stomach issues. She had severe anemia that since going gluten free has corrected itself. We are completely GF at home, started in April. It is hard and frustrating but like you said can always be worse. Freschetta frozen GF pizza has saved us for many birthday parties.
Sarah says
I have so many feelings about this post. Thinking of you both and what amazing warriors you are.
Amanda says
We just started this journey in our family. My daughter has an auto-immune disease that is requiring a drastic diet shift that includes eliminating gluten. With you and praying for y’all!.
Lisa says
Hi! I don’t read everyday but follow with Holiday time recipes. I am very sorry to hear all your family has endured & are going through. I had a young Hysterectomy, age 36, I know you’re going through a lot yourself. I entered the world of Biodentical Hormones when women got off hormones scared of ‘breast cancer’, it’ll be 19 yrs this Spring. As you educate yourself for your family, please educate yourself on you!! Find a GREAT Hormone Doc that looks @ you~your not just a number from your labs! I’ve learned a lot & have been on Compound Medication to help me(all Compound Pharmacies are not good)! Please email me as I could write a book on my experiences alone, good & bad. It is truly a daily learning of your own body & keeping it fine tuned! Blessings as you begin your own journey of this new life.
Jacky says
Awwww, god love her little heart. I’m so sorry to hear that she’s battling celiac. It is hateful, particularly on a child. I’m praying for continuing healing for all of you!! ❤️
Kaycee says
Oh sweet Kensington! First, she is such a trooper and so are you, Shay! My husband was having very similar issues and needed to become GF, egg-free and soy free. The hardest part for us was adjusting to not eating out. Also, literally everything has gluten or soy, which was very hard and discouraging. Once we got the hang of reading labels, it became a lot easier. We have become more picky in our restaurant choices, and we also research prior to eating out.
On the flip side, it was kind of fun for me trying out new recipes that were allergen friendly! Also, if you are ever in the FL panhandle or gulf shores AL area, you HAVE to go to Lulu’s! They are known for accomodating folks with food sensitivities & I believe they even have a separate kitchen to prepare everything in which is huge.
TCRulz says
My daughter was diagnosed with celiac disease shortly before she turned 2 years old. That was 25 years ago, before flour mixes (I actually ground my own rice to make flour) and before mandatory labeling laws. I learned to cook, and learned how to study ingredients, and she learned how to be assertive in a restaurant. 🙂
This is a challenge, but not an insurmountable one. You’ll do fine.
Lisa says
You probably have already done this but the dogs should probably eat gluten free as well. A friend of mine had to switch her dog’s food as well because her son was so sensitive.
Alison says
Shay, you are so strong and brave! I’m so glad you found out what was making Kensington break out and now she is feeling so much better. Praying for you all as you go through this new change as a family.
Lois Tallman says
I’m not an expert, just a Mom that has done a lot of research since I have a child with this. Have you done the genetic test to find out which gene the celiac is? There are two types HLA-DQ2 and HLA-DQ8. DQ2 is the common form with common symptoms but DQ8 is the less known one (only like 8%) with varying symptoms. We’ve found someone can carry DQ8 ie., father of the child but not test positive for Celiac but still have other Celiac symptoms. Both our children got the DQ8 but only one has symptoms. Hope this makes sense and hope you write another post sometime if you figure any of the genetic components out. The DQ8 is so hard to figure out and the doctors just want to say it’s celiac that’s it, eat gluten free when in fact it’s the other components of this gene that’s the problem!
Wannie Johnson says
Check out Iowa Girl Eats for sure. Great recipes for celiacs.
Hilda says
Thank you for sharing your story. I have read it three times. I follow Thedefineddish and livinglovingpaleo and primalgourmet for recipe ideas. Living loving paleo shares her struggles of a similar disease and how she took charge of her gut.
Elizabeth says
I’m not celiac but have to eat gluten free. My favorite easy baking mix is Pamela’s brand. I haven’t had good luck with all of the various flours, probably because I live in Colorado at high altitude. Also, check out Iowa Girl Eats blog- she is celiac as well! Mostly, I just skip the “gluten free” things and try to eat clean things that wouldn’t ever have gluten in the first place- easy for an adult, hard for kids though! Good luck and thank you for sharing sweet Kensington’s story!
Aw says
Mochi muffins – so so so good and gluten free! It is from mochi sweet rice flour. You can make muffins, donuts, cake, ect. I bet ya’ll would love it!
Ash says
Thanks for sharing. We have gluten, nut, and other allergies at our house. I would never wish allergies/celiac upon anyone, but I am looking forward to your yummy recipes that will come along with this diagnosis that will bless other families, like mine, with allergies. You and your daughter are in our prayers
Pamela says
Oh, Shay, I am so sorry for all you’re family has been through! Let me encourage you to research Joette Calabrese. She has an online course called “Good Gut Bad Gut” that has protocols that can be used to uproot food intolerances and allergies. She is a very credible expert who offers many solutions on her blog and in her online courses that have helped my family heal from years long digestive issues and headaches that medicine hasn’t been able to help. There is real HOPE for celiac!
R Watson says
Shay,
You guys sound like you had quite a horrible end to 2019. But as ever, you handle everything with courage and grace, then use your experience to help others. Thank you and Kensington for sharing your story. Your post has been the impetus I need to get my own daughters checked out. Both girls are college age and have have been complaining here and there about digestive issues. However difficult it is too coordinate specialist visits when they live in different states I’m now going make it a priority to get them checked out with an allergist. I know I feel so much better myself when I avoid gluten….it just sucks that most of my favorite comfort foods contain it! Here’s wishing you guys a healthy happy 2020.
Kellee says
Thank you for sharing with us. Looking forward to all the gluten free recipes!
Katie Bearden says
I’m sorry! Thank you for sharing your experience with us and I’m glad Kensington is feeling better.
I wonder if someone in comments can answer this? My son who is about to turn 8 next month.. had eczema as a baby/child. Pediatrician did some blood testing for food allergies and it came back negative. He still to this day has to take Zyrtec for environmental allergies and we struggle with his sleep.. he had sleep apnea which has improved after tonsillectomy but he still wakes up itching and has night terrors. I wonder if he is having a reaction to gluten? Would the test from when he was a baby had shown this or is it possible it was missed?
Kelly says
I confess that I haven’t read all the comments here, but if no one else has mentioned it, I would recommend the GF Scanner App. It’s handy when you’re out and about. You can search for popular food items plus you can literally scan the barcode of a food item and it will tell you if the item contains gluten. It will also tell you if it can’t confirm that an item is gluten free. I think it’s helpful if you’re out and need to grab a quick snack – you can quickly scan the item to see if it’s safe.
Vanessa Roberts says
I can’t even begin to relate to all that you have went through and continue to go through. My prayers are will you all! I am definitely interested in learning about about Celiac disease and removing gluten as well. Thank you for sharing these stories and all you have learned so far!
Jordan says
I also have Celiacs! I was diagnosed last year and it’s definitely a struggle especially with cross contamination. For restaurants, Find Me GF, the app, helps SO much! It’s like Yelp for Celiacs. The Defined Dish is a GREAT cookbook that’s new. Snap Kitchen and Reful are easy ways to grab meals that are all GF. Central Market has so many great GF options. Caulipower pizza is so delish. TJs has a lot of great new gluten free items, and then unrefined bakery has so many good things.
Amy says
Our daughter had “odd” Iowa Girl Eats is the best foodie blogger that has celiac!!! Check her out! Get yourself a good measure for measure Gfree flour. I like King Arthur’s and Cup for Cup and then go on making all your favorite recipes using this flour with the same measurements! It’s not perfect but it’s the best alternative!!! You will spend more but it’s worth it. Get yourself the find me gluten free app when eating out and find the celiac friendly
Spots. This is essential for traveling! Also, one more thing- our fav kid protein bars that are Gfree are the z kids bars: chocolate mint and peanut butter and chocolate. Both are at
Target! Good luck! Oh! Gosh I could write a book. Make sure you have all her nutritional levels checked. Go see integrative pediatric MD bc they will know what blood to order normals dr’s just do not. It is highly likely Kensington has deficiencies and needs supplements. But I can say that my daughter went from absorbing very little to her gut healing and us needing to supplement way less bc her gut was finally
Getting to a place of absorbing nutrients from her food again. And it was bad. She needed IV’s of vitamins at one point. You will be an expert before you know it!
Amy says
Oops that first sentence is suppose to say our daughter had odd symptoms too. Hers her all behavioral! And they all resolved when giving up gluten.
Courtney says
You need to start following iowagirleats.com
Your website and hers are where I get all of my recipes. She was diagnosed with Celiac disease a few years ago and had even written an ecookbook with tips.
Becca says
It’s amazing how much everyone will start to feel better when going gluten free! I feel like my skin changed so much! Make sure as she gets older that you find makeup and body care products that are gluten free! It’s in everything sadly! The defined dish is a awesome person to follow on Instagram and she just came out with her cookbook!she is from the Celina area now living in Dallas! I saw this recipe this morning and instantly though of y’all! Prayers for you all as you transition to this new way!!
http://www.thedefineddish.com/gluten-free-sausage-balls/
Amanda Carrow says
My husband has a wheat allergy which is totally not the same, but we have to eat a lot of g-free items to avoid the wheat. Also, one of my best friends has Celiac so when we get together, I have to be very cautious of what I’ve cooked. I’m sure you’ve heard it 1000 times, but Aldi has SO many options. Their g-free pretzels are even better than regular pretzels. Also, I’ve been making your bundts with g-free Betty Crocker cake mix for years and even won a Sunday school baking contest with the apple cinnamon cake! I understand none of this is “fun”, but with my husband’s wheat allergy and my son’s dairy allergy, we always say that if you have to have one, now is the time to have an allergy. There are SO many options out there and so many more restaurants are getting it. This new normal you’re living will have so many more options than you would have 15 years ago!
Catherine says
You are probably already aware of this site, but Iowa Girl Eats has great GF recipes.
Lauren says
First, I am SO, so sorry that sweet Kensington (and her mama and daddy!) are having to deal with this. I am so glad that y’all were able to determine what WAS wrong and get it handled SO quickly! Wow! Curious if you noticed other things that were indicators looking back? We have been an allergic family for 8 years. My son was diagnosed with a tree nut allergy at 2 years old, just weeks before I had our youngest child. Since my teenage years I have had unexplained, but persistent stomach problems. I’ve never seen a doctor about them (stubbornness), and honestly had not noticed how bad it was until last year when my husband pointed out that my problems were NOT normal and I had to leave a dinner because of it. Then in May of 2019 I had an unexplained eye issue pop up. I thought I had pinkeye but after visiting the eye doctor I was diagnosed with episcleritis. Long story short, I’ve been seen about lupus and other autoimmune and have thus far been able to eliminate those problems. BUT my symptoms remained. So in September I eliminated 5 major allergens from my diet and had some blood testing done. Gluten came back as one of the higher sensitivities that I have (along with pineapple). Eliminating it has changed my LIFE. I still occasionally deal with stomach issues (RARELY, but occasionally), but I feel like it must be that we are cross contaminating and it’s not totally gone from my diet. Anyway, THANK you for posting about this and thank you for making the change for your family. I am so excited to visit here to find gluten free recipes for you! It’s amazing how many gluten free options there are out there! The world is coming around!
Kay says
So sorry to hear what all your family has faced in the past several months! I read where another reader encouraged you to read Joette Calabrese blog which covers so many medical issues including celiac. I too am familiar with her blog. She uses homeopathy (pronounced home-op-a-thy) which can be purchased through Amazon, Whole Foods, etc. and only cost about $10 per bottle, does not have side effects, and can be used along with other medications. It has helped our family in SO many ways and I hope you will have time to also check this out. You have an amazing family and your “we can do” attitude is admirable. Love, love your blog and praying for the right answers for your sweet family!
Lisa Clausen says
Hi Shay! I got chills reading this post as I’m a longtime follower and can relate to this on so many levels. I have a kiddo with several food allergies and our world was flipped up side down when we found out about her allergies and realized how much we’d have to change in our lives. We are nearly 5 years into our journey and it is getting easier and easier to navigate. Please know that you and your family are not alone and this new way of living will quickly become your new normal! I wanted to share my website with you as these g-free bath and body products have been a lifesaver for us. If you have any questions please feel free to reach out. Best of luck to you and sweet Kensington, I’ll be following your g-free Journey every step of the way!
Jesseca Welch says
My goodness you have been through a lot in a short amount of time, but you’ve handled it with such grace and a fight that only a mama has inside of her. ❤️ To be honest, this is the very first blog post I’ve read of yours. My best friend shared it with me today because my eight year old daughter, Josie, has Celiac as well and is currently in the hospital being treated for a secondary (and life-threatening) autoimmune disease brought on by her Celiac Disease…more on that later.
You are already doing so well illuminating gluten from your household. It can be extremely overwhelming, by it seems like you’re ahead of the game. My biggest piece of advice would be to start off as simple as possible. Cooking entirely gluten free is difficult, but there are a lot of great products out there that can make your life much simpler in the beginning. While you don’t want to feed your daughter (or family) processed foods over the long term these products can be of great assistance while adjusting to a gf lifestyle. Baking gf is the most difficult thing to master and takes a lot of trial and error. Luckily, there are quite a few kid-friendly options available. Surprisingly, Wal-Mart and Aldi have the biggest selection available in my opinion. Of course, natural grocers have a wide variety, but can be very expensive. I’ve learned where I can get the most appetizing options for gluten free products, but they’re all found at different stores.
It’s difficult to balance a gluten free diet while also helping your child feel as normal as possible. As my daughter has gotten older it’s become more difficult because she recognizes her differences more and wants to be able to eat the same things her friends eat. For me though, her health is my number one priority, and it’s a conversation we have on a daily basis.
My daughter, Josie, has silent Celiac. Her skin is the only real indicator that her body rejects gluten. Our story began in 2014 with severe anemia, blood transfusions on a regular basis, low pulse ox readings, appointments with oncology specialists, and lastly a hospital stay that landed her on life support…all while not knowing why her lungs were failing with no obvious reasons. Eventually she was diagnosed with a rare lung disease called Idiopathic Pulmonary Hemosiderosis that affects 1 in 1 million.
In our efforts to learn more about a disease that very few doctors have even heard of we were able to get her in to the Mayo Clinic in Rochester. Everything in her blood work indicated Celiac, but the enormous amounts of steroids she received while on life support hid any signs of Celiac Disease when an endoscopy was performed. The odds of having IPH and Celiac are 1 in 5 million. So, we came to the conclusion that our daughter was rare. Her silent Celiac triggered a second autoimmune disease that almost cost her her life.
She has been on a gluten free diet since 2014 and has had ZERO signs of IPH! It went dormant and her lungs showed no signs of disease which was basically a miracle. Her GI at Mayo suggested we could reintroduce gluten when she was older which we started last October. We did a 3 month trial and she showed no signs of Celiac. We were so hopeful. The last week of the 3 month trial she began exhibiting signs of her lung disease. In the amount of time it took for us to see how her body accepted gluten her lung disease was no longer dormant. She was placed inpatient 3 days ago and thankfully intervention began before her lungs began to fail.
All this to say that YOU have to follow your gut instinct. Never quit persisting if you feel something isn’t right. You are her mom and see he on a daily basis. You know her best! Before our trip to the Mayo we were told that there was no way she had Celiac Disease and even if she did it would not be connected to her lung disease. My gut told me they had to be correlated. We thank God every day for her medical team at the Mayo for seeing the correlation and leading us down the right path.
We’ve lived for six years not fully understanding how the two are connected and it wasn’t until yesterday that we were FINALLY given a name for her disease…Lane Hamilton Syndrome. It feels so good to finally be validated for something we knew all along, but couldn’t prove. Although there are still very few cases of LHS written up at least we know it exists.
Our daughters are rare. My prayer is that your daughter is able to maintain the same quality of life on a gluten free diet that she had before her symptoms began and that her body thrives without any secondary diseases.
I apologize for the long comment, but your post inspired me to share our story in the hopes that no other child has to experience any more than they need to in regards to Celiac Disease. It isn’t often that I’m able to communicate with others who truly understand the effects a disease can have on a person. I’m an open book (obviously ?), and am always happy to discuss anything in regards to this ugly disease. You can follow her story on Facebook at Prayers for Josie. Even if this doesn’t apply to your daughter maybe it will reach someone who is going through what our sweet girl went through and continues to fight every day.
Stay strong! You’ve (all) got this! ❤️
Mix and Match Mama says
Wow! Thank YOU so much!!!! I appreciate you taking the time to share your story. I just know someone will read this and they (or their child) will be helped. God bless YOU!
Dana Jackson says
This made me teary! You are right that was A LOT to hear and deal with in 5 days!! Thank you for sharing with all of us and letting us pray for you all! So glad you finally got a diagnosis and can now move forward! Will be praying as you all navigate this new normal!
Breanna Gonzales says
First of all- you did such an amazing job encouraging people to NOT change their diet before getting properly tested!!! This is so very important and you stressed it so well. I know your post is going to help so many people because Celiac Disease is quite a common disease. It’s just not one that is diagnosed enough. I personally do not have CD, but i worked for the Celiac Disease Foundation for years. My best advise to you is this- go to the Celiac Disease Foundation’s Gluten Free Expo! It happens only once a year. They bring out the best doctors, dietitians, and vendors EVER!!!! It’s like a dream come true for people who are diagnosed with CD. I cannot express to you what a blessing this conference would be to both you and your daughter. The lectures are so relatable and so informative. And then the expo- has HUNDREDS of GF Vendors that you can sample!!! It’s literally the best. I can’t even express this enough. It’s a must. Especially being newly diagnosed. If you want – feel free to email me with any questions- i would love to help in any way i can. Xoxo. Praying for you in this new journey. Oh and here’s the link for the expo: https://celiac.org/cdf-conference/
AmyB says
Thanks for this post. My daughter was also diagnosed with celiac this September at the age of 4. Her symptoms were headaches and delayed growth. We don’t know any other family members with Celiac so it’s quite overwhelming. Thanks for sharing your story!
Rebekah says
Hi! So glad you found out what is going on with her! I have UC and I eat gluten free. If you check out the autoimmune diet AIP, you will find so many recipes that are gluten free. Specifically “against all grain” Danielle walker has tons of delicious recipes. It’s an adjustment but you will find great recipes and your family won’t miss gluten anymore! I have found that jovial has the best rice pasta. They sell einkorn which is an ancient grain that hasn’t I gone any genetic modification like today’s grain and may be tolerated by you daughter but I wouldn’t try it for a long time. Also, get some good probiotics in her from sauerkraut, fermented pickles, kefir, yogurt etc!
Mary - Beth says
I’m pretty late to this post and I’m sure you already have so much more information than you need, but after doing a Whole30 last year I decided to go as gluten free as possible. Paleorunningmama.com has tons of great recipes, especially the triple chocolate vegan brownies! So good! Also the banana nut muffins (I swapped the nuts for chocolate chips) are great. Do you have a membership to Thrive Market? They have a lot of items you would like that are usually at Whole Foods but much less expensive. My kids love Annie’s cocoa bunnies for a gluten free cereal. Good luck!
Kali says
I’m glad she’s feeling better! I was diagnosed 2 years ago and had a difficult diagnosis process. Recently I’ve started working with a Registered Dietitian who specializes in Celiac as she has it herself – Erin with The Celiac Space. She has an amazing restaurant guide to help when eating out (highly recommend!) and her Instagram is full of amazing resources as well. She has a guide to help when reading ingredients in food that she calls “Yay, No, Woah” that’s been incredibly helpful as well. It’s definitely a learning curve and I’d just recommend taking it one day at a time.
Detroit Duchess says
Oh my goodness, poor Kensington! I can’t imagine how scary this must have been, especially not knowing why it was happening. Thank goodness you have a diagnosis and can help to make a lifestyle change. I don’t know how you deal with all of this, but you absolutely do it with grace and positivity. Thank you for sharing and I hope Kensington is feeling much better now!
Alysse Hogan says
Hi,
I am feeling very overwhelmed right now. For the last several weeks, 2 of my kiddos have had a weird stomach virus. Something in my mom intuition just made me feel like there was something more going on. I was referred to a GI, where they ran blood tests, and I was so surprised when he mentioned celiac. The dr. just called me earlier today and I learned that my 2.5 year old has all the blood markers for celiac, and will have to have an endoscopy to confirm it. I’m sad, for a lot of reasons. How did you handle this? I know your daughter is probably old enough to self-regulate what she eats, for the most part, but I just feel like really unequipped for this. (Pity party, yes). I’m super grateful the Lord allowed us to find out now and my son won’t suffer for decades, but I still don’t even know how to even sort of navigate this. I’m a stay at home mom, with a 3, 2, 1 and pregnant, and I feel like this is going to be really difficult. Thanks for the advice and encouragement in your post.
Mix and Match Mama says
It’s okay to have a pity party!! I have them all the time! I’m so sorry!!!! This is all very overwhelming. I GET THAT!!!! I feel like the good news is that you don’t have to make changes today. You guys will still be eating gluten until it’s all diagnosed, so in the meantime, buy the two books I recommended and start making lists. I really thought that reading the books and then starting to shop for g-free items, make g-free meals slowly in the weeks leading up to the biopsy really helped. I am SO SORRY!