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.
…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