Happy Monday, friends! I hope you all had a great weekend!
Okay, I’m about to open a big ole can of worms.
A big one.
I’ve been dreading hitting “publish” on this post as I know I’m stirring up a hornets nest, but I don’t know how else to handle it.
Here’s the deal…upon further review…
…it does not seem to doctors that Kensington has Celiac disease.
Yup.
We didn’t see that coming either.
Kensington is graciously allowing me share *some* of the details with our group today, but she has asked that I don’t share much more/answer a lot of questions because it is private and about her health.
I’m going to make a really long story short…at the beginning of this year, Kensington’s gastroenterologist moved, and we had to find a new one. The GI is who diagnosis and cares for those with Celiac disease (which Kensington was officially diagnosed with almost five years ago). We found a new one (from a referral from a friend) and at our first annual appointment he seemed perplexed that we thought K had Celiac. Almost five years into a diagnosis, she still has never presented with any GI symptoms. He sat on his stool with his hand on his chin looking at us kind of like we were crazy for thinking she had Celiac based on a rash she had when she was 11. He pulled her original bloodwork and results from her intestinal biopsy and when he reviewed the findings, he wasn’t convinced it was Celiac. So, he ran a huge blood panel on her looking for any signs of inflammation (which would occur if you had an autoimmune disease…and something the former GI hadn’t done since the diagnosis). He didn’t find any signs.
So let’s fast forward…
Over the last 8 months, we have seen many different doctors in different fields, and they all agree.
They asked us to start micro dosing her with gluten (trying to trigger inflammation/a rash/GI issues/anything).
They have all done their own blood panels and compared the results.
They asked us to allow her to eat greater quantities of gluten (her first “gluten” meal in almost five years was…Chick-fil-a nuggests 😉 ).
They asked my VERY sweet mother-in-law if she wouldn’t mind sharing her own information regarding her own autoimmune diseases so they could cross reference for any genetic similarities between the two. At this time, there weren’t any.
We had a second intestinal biopsy scheduled for this month…but at this point, based on Kensington’s current diet and lack of any inflammation and/or symptoms, the GI said he personally doesn’t feel comfortable putting her under general anesthesia to “hunt around” when she shows no signs of having Celiac.
I think the rheumatologist said it best when she said “It appears you daughter had a weird rash when she was 11 that sent you guys down the wrong (Celiac) path and no one ever corrected it until now.”.
So, here’s the deal, I’m sharing this with our online community for a few reasons…
The #1 reason is that I know my original post when I talked about (in great detail!) Kensington’s symptoms and diagnosis has been a reference for many….and we now believe that to be incorrect information as we should have gotten a second opinion and explored it further. Rashes and skin conditions *can* be a sign of Celiac, but in our situation, it doesn’t appear to be the case.
The doctor felt confident in her diagnosis five years ago, so we didn’t even think about getting a second opinion, we just removed gluten from our house and her diet and that was that. We’ve maintained annual well visit appointments and had no reason to question the diagnosis.
I should have gotten a second opinion at the time, and I certainly have regrets about that, but I’m also very grateful we’ve had one since.
Other details:
1: What about Kensington’s amazing skin that cleared up because she was eating g-free? Well, every doctor said basically the same thing…everyone’s skin will look super amazing if they clean up their diet regardless of an autoimmune disease. One doctor also pointed out that an 11 year old girl probably doesn’t take care of her skin as much as an almost 16 year old girl. A third doctor reminded me that hormones fluctuate so much during those years that it’s also a factor.
2: Are you still a g-free family? No. I think at this point in 2024, most of us all kind of realize that gluten isn’t “bad” for most of the population, but it’s also not necessarily “beneficial”. Our family has been fine with gluten-free meals, so for the most part, we’re going to keep that up. I still only buy g-free bread, pastas, and this summer, every dessert we made was g-free. The other night at dinner, our family ordered gluten-free pizza at our favorite McKinney restaurant and Andrew pointed out that we didn’t have to and yet, we still did. Now, I also think with the holidays and fall baking season approaching, I might buy me a can of Crescent Rolls because let’s be honest, I’ve missed making seasonal recipes with gluten. Should anything change and we need to go back to being strictly g-free we will, but right now, we’re going to relax our “norm”.
3: I made the decision to take the original post down. Right now, I don’t think anyone should see it “pinned” or find it via Google and use it as a reference. It was honest information at the time, but now we don’t believe it to be true, so I removed it from my site.
That’s it, folks. It would be much easier to not bring this topic up, but I don’t feel right keeping this to myself. Should anything change, I’ll let you know, but for now, we’re celebrating her good health and relaxing our rules on gluten. Should you find yourself with ANY diagnosis that you think might need a second opinion, I’m encouraging you to get one.
Again, I won’t really be answering questions in the comment section today, but I wanted you to know. As you know, I’m so super grateful for this group of gals. So grateful. If you want to see who won our SLOW COOKER GIVEAWAY, make sure you pop over and check out MEAL PLANNING MONDAY 🙂 .
I’ll see you tomorrow for some much lighter content. Thanks for always loving on my family. xx
Emi says
Second opinions are ALWAYS good and I hope, and believe, she probably doesn’t have celiac. As someone who does,anyone reading this should be aware that you can have “silent” celiac disease – meaning no symptoms. It can even be missed when doing a biopsy. BUT the gold standard is still biopsy after a person has been eating gluten for over two weeks straight.
Thank you so much for being transparent! And thank you to Kensington for allowing you to share much of her journey. It really doesn’t matter if some of the information you originally posted was incorrect because at the end of the day you did bring light this awful disease.
Sarah Shaneyfelt says
I agree with this! The Lord allowed her to go through this and because you shared, I would have never thought gluten could be an issue. Fast forward a few years when I was tired of how I was feeling, did some research, saw that I should remove gluten (went back and read your original post), went 100% gluten free, and ended up pregnant two weeks later–and I was told it was next to impossible to get pregnant so you know that REALLY shocked me! The OB I went to told me the gluten probably caused my reproductive area to be so inflammed. I’m so happy Kensington can eat whatever she wants now, but please tell her that because she allowed you to share her story, we now have Merritt in our family!!!
Mix and Match Mama says
Friend, you’re going to make me cry! You are too sweet with your words. xx
Bev says
No can of worms! It’s a positive discovery you’ve handled with grace just as you did the one 5 years ago. Rejoicing with both you & K! 💞
Monica says
I agree! You removed gluten from her diet and it worked…don’t “should” on yourselves!
Jenny N says
100% agree! I bet she was so happy to eat Chick Fil A!!
Kari says
I agree! So grateful for this good news. Humble of you to share. YAY!!
Elspeth says
Thank you for always sharing parts of your life with us! Have a wonderful Monday!
http://www.elspethsdaybyday.com
Diane Moore says
While thinking of all you and Kensington have gone through over the past five years could be frustrating, it’s wonderful to hear she doesn’t have celiac disease and will not have any adverse affects that might have been associated with it.
An excellent reminder we should always get a second opinion on major diagnoses.
Thank you, and Kensington, for sharing. 💕
Emilee says
I’m a food allergy mama, so I know it had to be scary to give her that dose of gluten! Our 1 year old is allergic to rice and oats, and it’s such a challenge. With his condition most children outgrow it, but I am already stressed about the food challenges we will have to attempt. Glad to hear of Kensington’s success!
Samantha says
Emilee, does your child have FPIES? Mine did and he did outgrow it! It is such a challenge though. 💙
DK says
Fascinating, thanks for sharing. I have been non-celiac gluten free for over a decade but in the past year learned it is likely fructan intolerance not gluten per se. Medical community’s knowledge continues to evolve.
Lauren Palmer says
This is so true! The medical community is evolving too as is everything that they know. Don’t beat yourself up, Shay! And so glad that Kensington is well!
Nicole says
Oh Shay!! I’m happy that Kensington is fine and tolerating her diet but I cannot imagine the shock and roller coaster of emotions this journey has done. I developed a skin rash several years ago and been to every speciality physician to try and figure out what was going on with no real answers. I removed gluten and the rash remains. I’ll tell you that the best care I’ve had is from a functional medicine physician. I still don’t have an answer, but I felt like they listened to me and are trying to put every puzzle piece together. I don’t know if y’all have seen any functional medicine doctors for K, but it may be worth a try. Good luck my friend. I know you will navigate this well.
Robin says
I am 60 years old now, but have dealt with eczema and other skin rashes most of my adult life. At one point around 30 years ago my dermatologist thought that I had dermatitis herpetiformis (which is related to gluten). When that turned out not to be the case I was tested for allergies and only reacted to dust mites (I should mention I also have asthma). I embarked on a journey of weekly allergy injections. The asthma improved, the skin…not so much. Another couple of dermatologists down the road and I was given skin patch tests again and FINALLY discovered that I am allergic to formaldehyde-based preservatives. Those type of preservatives are in TONS of things, makeup, soaps, shampoos, lotions, detergents. Formaldehyde is used in clothing and in carpet and wood finishes.(Explains why I had a severe reaction after helping a friend put shelf paper in her brand new kitchen cabinets!). May I suggest that you look for skin care products that specifically state that they do not contain formaldehyde? The brand I use for soap, shampoo and lotion is Vanicream. Hope this helps!
Sarah Nienhuis says
All any of us can ever do is the best we can with the information we have. You did well by doing everything you could for K 5 years ago till now, by keeping her health story as private as possible and by coming forward with new information. ❤️
Lisa D says
Agree! Information as needed. Thanks for sharing about your daughter’s health. It doesn’t seem like a “big can of worms” though. Second opinions are always a good idea; glad that you are proactive about your family’s health.
Something to consider would be to research the ingredients in skin and hair care products. Many ingredients in these products are NOT good for us!
Kimberly M. says
Shay- what I love about this is that we see you grow as a Mama in real time and have to revisit things that you were once convinced were 100 percent correct. This is all of us!! We can all relate to this on so, so many topics. Thank you for your transparency!!
I’m so thankful that K. (And you all) got some further info. It honestly sounds like these doctors were pretty thorough in their analysis! Even though nothing you did by going g-free ‘hurt’ her in any way I’m sure it’s a relief to know going forward and as she heads to college/adult years that she doesn’t need to be ultra vigilant regarding gluten! Lots of ♥️ to your fam as always!!!!
Alicia Woolen says
This is quite shocking although doctors aren’t perfect! I do have Celiac and I wish it was a mistake. 😉. I’m happy for Kensington!
Vicky says
I can imagine that was tough to write. But (in my opinion) you’ve absolutely done the right thing with how you’ve handled all this. And the most important thing is that Kensington is healthy and you’re doing what’s best for your family x
Kim says
Thank you for sharing, and that’s wonderful news 😊 Yay for healthy kiddos!
Polly Pover says
I will just say this. It was brave of Kensington to share this diagnosis 5 years ago and brave of you both to share what has happened in this evolving journey. Thanks for illustrating the importance of second opinions when one is told they have a life changing diagnosis.
Jill says
I’m not a normal blog commenter but feel like I need to tell you my family had a similar experience with nuts when my daughter was young. Fast forward years & she too is a-ok with nuts. Rashes are weird and can usually not be diagnosed. I’m sorry your GI sent you on that extreme path. The good news, the best news really, is that K is healthy & happy. Gluten gets a bad wrap but I think we can all agree that bread is not evil. Enjoy those crescent rolls!
Mix and Match Mama says
Thank you for sharing! I’m so glad your girl is a-ok with nuts now!!
Tara says
I’ve been a long time reader, I think your transparency is so refreshing! We do the best we can with what we know at the time. I think it’s SO important to get a second opinion and I’m so grateful you have shared. Loving all the wellness posts in general! Xo
Karleigh Johnson says
Thank you for sharing this with us Shay. I am so glad you guys got a second opinion and that you are aware enough to notify us of this change. I can’t help but sense a little bit of mom guilt in your post, and I want to say this—you did the best you could with the information you had at the time and that is what every good mama does. You didn’t know what you didn’t know, and now you do, so we learn and we move forward. I mean that in the most encouraging and loving way because it is something I have to say to myself as a mama, often! Also, I’m going to kindly and gently usher you to maybe (not even right now) see a functional medicine provider (NP or MD). They typically explore the non-traditional routes and find answers or solutions for issues that western medicine does not (or confuses as something else). If she feels good right now and doesn’t have any other issues then let it rest, but should anything else come up I would think functional medicine might be a good place to start. Just a loving nudge. <3
Kelly Townsend says
That’s amazing news! I bet K is SO excited to have food freedom again! I have celiac and I’d love to be told they were wrong! 😆.
Marla says
This is wonderful news Shay! Please don’t feel any guilt about not getting a second opinion. You had no reason to believe you needed to get one. I am just so so grateful that this diagnosis can be lifted from Kensington’s history.
Thank you for sharing.
Jeanie says
What a blessing for Kensington and your family. It would never have occurred to me as a Mom to get a second opinion on something like that. Kensington is the better for having parents who have protected her based on the information they were provided. No harm no foul is how I see it. Now that quick to diagnose Doc on the other hand……😤
I believe God has a purpose for everything and maybe the purpose was to use Kensington as a g free representation for a timely season.
Melissa Terry says
I’m really hoping people are kind about this since you did the best you could with the medical information you were given at the time. The big picture here is she’s healthy and much less restricted in her diet which will be much easier for her as she gets older and heads off to college. Hugs!
Andrea Hooper says
Would you be willing to share if you personally feel less bloated or experience less inflammation with less/no gluten in your diet? Given that we know gluten isn’t inherently bad, and you don’t have celiac disease, did you experience any differences in your own body from cutting gluten?
Mix and Match Mama says
I had reduced the amount of gluten I was consuming (not eating it at home), but I was never fully g-free as I would eat it outside of our home, so I can’t truly attest to how I felt as I was never 100% gluten-free.
Kristin says
Thank you for being brave and open enough to share this. And, woo hoo! I am glad Kensington isn’t celiac. Our daughter has mild hearing loss which doesn’t require correction. She couldn’t play keyboards in jazz band because she couldn’t hear the bass to follow it, but she can be on the second floor of our house and I can whisper (which is high pitch) and she can hear me. One year we went for her hearing check, which had been stable since we discovered the loss in kindergarten, and the doctor told us that it was worse and she would need hearing aids in high school. I had a super stressful year, because of the isolating nature of hearing loss, the connection to dementia, etc. We went back the following year and her hearing check took forever. Finally, the ENT (same practice, different doc) told us that her hearing was exactly the same as it had been for as long as we’d been check it, her loss was most likely due to the fact that the cilia in part of her ear didn’t develop in utero, and she would not have any further issues until she got to age-related loss. Holy cow! How I wish I had gotten a second opinion and saved myself that year of stress. Hopefully your sharing about Kensington will help people understand that getting a second opinion can sometimes be a very good idea, whether it tells you that someone was mistaken, or helps you move forward with dealing with a diagnosis.
Mix and Match Mama says
Thank YOU for sharing your family’s story. I appreciate it more than you know. xx
Grace says
A big Thank You for both you and Kensington. These types of things are really hard to share but thank you. A few years ago, I had some medical issues and went on a journey with doctors and physical therapists trying to figure out what was wrong. It was so frustrating and tiring but it is important to stay hopeful and aware. It also helps when connecting with others to see that you are not the only one going through the situation when trying to find a medical diagnosis. I will keep you all in my prayers with this journey. Take care:)
Erin Trainor says
Please do not regret anything! Please do not feel you “should have”. Stop. You had a medical dr tell you she had celiac and thus her diet changed and she and your family ate a bit cleaner. No harm. Likely an inconvenience at times. But you rallied together and changed things. I have a close friend who suspected celiac, removed gluten and her Dr said why change anything? It’s working for you. If you got a second opinion you would put her through more tests. You do what you do best, you shift with the wind. Make decisions on how she is now. And now you are blessed with the info that you can ask more questions. My mama heart is breaking for you if you have any regrets. Please don’t. We are all doing our best with the information we have.
Grace says
I just love your authenticity. Thank you for sharing! Been keeping up with y’all for years, and I look forward to reading your blog daily. God bless!
Paige E says
1. Wow.
2. Yay! GREAT news!
Allison says
Wow! Happy you have answers!!
Rachel says
Hi,
As someone with two celiac kids and sees a lot of celiac and non celiac gluten sensitivity patients (medical provider). If she was originally diagnosed at time of onset -done by biopsy of rash showing Dermatitis herpetiformis or a positive intestinal biopsy by all guidelines has celiac. Either of these are gold standard diagnostic positives for the disease. Also, she has had 5 years of intestinal mucosa healing even w some microdosing or greater Exposure to gluten for a short time it will take longer to show positive autoimmune markers. And sure skin does improve with clean diets but please know that your body is flagging inflammation when it is showing up on your skin. And if it improved w/ removal of gluten then even if not celiac, your body is still showing important signs and inflammation from an inflammatory source. There a fair amt of celiac pts out there that have zero GI symptoms and it shows up as rash, neuro symptoms, or no symptoms , etc. I really would suggest multiple second opinions if moving forward with gluten in her diet and be skeptical. If gluten is an issue for her body (even if not celiac), it can be so inflammatory, causing cascading health effects that can take years to show up.
Highly recommended.
https://www.amazon.com/Celiac-Disease-Peter-H-R-Green/dp/006076693X
Mix and Match Mama says
I appreciate this info! We have seen many, many providers over the last 8ish months and feel really confident right now, but of course, should anything change, I’ll let you guys know. xx
Rachel says
I should have also said, thank you to you and Kensington for sharing your story. Wishing you all good health. Navigating all of this Isn’t easy!
Laura says
Thank you for updating and sharing! Wishing her and you all the best in the medical mystery world- it can be frustrating and challenging to figure things out!
Laura says
Also, when a family member was in the hospital, I didn’t feel comfortable with their decision to discharge. I “went behind the doctor’s back” to get a second opinion. The second opinion doc agreed with the decision to discharge, BUT she also said to never ever hesitate to or feel bad about getting additional opinions! In fact she encouraged it.
Laura says
Oh and, this was NOT to make you feel bad about not originally getting a second opinion! I wouldn’t have thought to, either, based on how miraculously the removal of gluten seemed to help! I was just sharing my experience 🙂
Elizabeth Maricle says
Wow! Thank you so much for your transparency and journey with your family. Second opinions can be a wonderful and helpful tool with a medical journey.
Sarah says
Celebrating that your sweet Kensington doesn’t have a more serious disease! Thank you for sharing and wishing all of you continued good health!
Laci says
You did what any parent would do! No harm, no foul! Thankful Kensington is doing great and should issues arise-you will handle accordingly.
Paula says
Praise Jesus!
Leslie S says
That’s great news! Thank you both for sharing, and for caring about others so well. Wishing K good health going forward!!. Also, I am so encouraged by the relationship you and K have, what to share and what to keep private. I pray to navigate my relationships with my girls as well.
Ruby Huling says
You know what they say about 20/20 vision! You did the very best for K with the diagnosis you were given plus the fact you were so open about it has helped so many that read this blog! I’m so glad for your family, especially Kensington!!
Molly SB says
I’m a primary care doc, and I know better than anyone that we doctors are imperfect (as is the entire medical system). It is always important to advocate for your family within the medical system due to those flaws – but I wish it didn’t have to be like that. I am so sorry that that you went through all of this and hopefully have found now some trustworthy providers. You are an amazing mom!!!
Mix and Match Mama says
Thank you, thank you for saying this. xx
Holly says
Hi there, don’t beat yourself up. You did what was best for your child given the information that you had available at the time and she did get better. Taking gluten out of anyone’s diet is not harmful, so even if it didn’t cause her decrease in symptoms, you certainly did not make anything worse.
I would highly recommend seeing a pediatric dermatologist (not a general dermatologist who sees kids) if she flares up again. Both my son and my daughter had bouts with terrible skin rashes around 11 / 12 years and neither one was diagnosed correctly until we got to a ped derm (who diagnosed both within a few minutes). Also, the causation was different (son – viral infection, daughter – delayed penicillin allergy). Hang in there.
Leah says
My daughter had similar situation around the same age. She started getting hives / rashes everyday . Her dr put her on Zyrtec which helped but would still have mild rashes. Then it got worse to the point her whole swelled up. This went on for a year . Our pediatrician wasn’t the best and there was a lack of direction. Eventually I changed her diet and limited certain food . After a year , hives and rashes went away. I agree that diet can play a big role in skin . Good luck!!!!
Brooke says
I know you have regrets but it isn’t your fault or Andrew’s fault. Any number of us would have listened to the doctor and not questioned it. You handled it the best way you knew how. You still taught many people about Celiac disease. You showed your family and many other people how a diet change can be done. What if down the road one of your kids needs to make a major diet change? Many people don’t want to and don’t but your kids will have done it before and know they can. I am sure already showed many other people how it can be done through your blog. I feel like God had a reason this played out the way it did. I am so happy for Kensington. What awesome news!
Robin says
AWESOME NEWS!!! Thanks so much for the transparency but HALLELUJAH! The most important thing is that she does not have Celiac!! That is amazing!
Kristin S says
I can’t imagine what was swirling through your heads as the current doctor said those words. It feels like a gut punch I’m sure. You guys did your absolute best as parents with the information/diagnosis you were given and I hope none of you have regrets.
Shay, I really appreciate you typing this, “think at this point in 2024, most of us all kind of realize that gluten isn’t “bad” for most of the population, but it’s also not necessarily “beneficial”.” Years ago I did an elimination diet cleanse thing. My brilliant grandmother (who is also an RN) said, “honey, unless you have a diagnosed disease, our bodies need fat and carbs and protein and fiber. Dairy and gluten aren’t BAD unless they trigger something in YOU.”
What a journey for your whole family. I truly hope that Kensington doesn’t have any shame either.
I KNOW from you posting this that you will help some others. I just know it.
Beverly says
K was very lucky to. be born into your family. Things happen for a reason. You area warrior Mom who did everything in your power to keep her healthy with the info you had at the time. It may have sparred her all the teenage bad skin do to all your clean & healthy eating. Very lucky thing that you needed a new doc and got such wonderful & complete testing and dx of not having Celiacs. You certainly educated your readers and I am sure helped those Moms whose kddod truly have it. Enjoy K’s new found health and know that 2nd opinions can certainly clear things up.
Here’s to any more years of happy & healthy times for K & your family. Thank you for always being so open & honest about personal health issues.
Darcy says
Just want to say thank you to K for allowing you to update us- no doubt this will serve as a reminder to someone out there it is ok to get a second opinion and it is ok to get updated medical advice that changes things. Take care.
Catherine says
My daughter has Celiac disease. She kind of was falling off the growth chart. So they found indicators in her blood work and then followed it up with a scope. At the time, we were told that the only way to truly diagnose Celiac disease is with a scope. Just putting that out there in case anyone else is wondering about a diagnosis.
K.K. says
Shay, thanks for the important reminder of second opinions. I would have never thought to do that either! It’s amazing how things have changed, and I’m hoping it was a fluke, and she’s okay on all accounts!! Kensington, thanks for sharing your journey.
Carol says
Great news! So happy for Kensington and all all of you. Ignore what others say. Thirty plus years ago, when my boys were little, their pediatrician told me a Mom knows her child. As someone who has followed you since Kensington was a baby, I have seen nothing but 2 Great parents. I mean how many Dad’s would spend their Sunday afternoon fixing lunch for their son the following week. Good job! Andrew and Thank you for the video. This is one of the reasons, even though I am more your Mom’s age, that I have continued to follow you. Andrew reminds me so much of the way my husband was–always helping and especially always being their for your kids.
Kristin Lyngaas says
Just a comment no question! When I was 9 I had a really weird skin rash on my leg that wound around from my ankle to my thigh. We tried different soaps, creams, etc. The dermatologist finally got us in at the U of Minnesota in the med school to be a part of “Rounds”. They took two biopsies with no conclusion. The rash just went away on its own. There are a few things that could have triggered it. I guess my point is that the human body is crazy and magnificent. I’m so happy you got more info. 🩷🩷🩷
Beth Valenta says
What a brave and thoughtful way to share this! So happy for Kensington! Second opinions are such a need and finding who listens to you is so important. It has taken me a long time to advocate for what I needed and it makes such a difference when you can feel in charge of how and why you feel the way you do. As always, thank you.
Stephanie says
I had a similar situation- I was diagnosed as a type 1 diabetic and am NOT a diabetic (type 1 or 2). I’m still not entirely sure how the diagnosis was made, because I was told they were 100 percent certain upon my questioning. I was prescribed insulin and showed how to inject myself and everything. Thankfully my cousin is a type 1 diabetic and I grew up with her and really questioned my diagnosis and my need for insulin (which I never gave myself). I ended up having a thyroid condition which was corrected with a thyroidectomy, and have had no blood sugar issues since. I agree. A second (or even third!) opinion is always a good idea but would also encourage you to give yourself grace. All we can do is make the best decisions we can with the information we have!
Mix and Match Mama says
Thank you SO MUCH for sharing your story with us!!
Lisa N says
So happy for your family and especially for Kensington! Great that her new GI doctor didn’t just continue on with previous diagnosis without question and that they really looked at her history and tests and questioned them. Wonderful news!
Maureen Werner says
I’m sure it was such a shock to you all! I’m just so happy for K!!🤗❤️. You are such a good mama! Don’t beat yourself up over this! We all do the best we can with the information we have! Blessings to you!🌻
Natasha says
Thank you for updating us, and thank you to Kensington for letting you share this. As parents we are always trying to do what is best for our kids with the current information we have. And when the information changes, we make different decisions. This is what parenting is — you try something and adjust as necessary.
I’m happy for all of you that this is adjustment will hopefully be easier than the adjustment to gluten-free, but don’t stress about having made a different decision back when you had your first answers. It’s not like you’ve been forcing Kensington (and the rest of your family) to do something unhealthy — like a daily shot of vodka for five years and now you’ve found out — ooops, that’s not what she needed 🙂
Amy Owens says
What wonderful news! It must have felt so freeing for K (and you!)! Knowing how much you’ve been reading about your health and such this past year, I wanted to share a podcast that just came out that I think EVERY person needs to hear. Not sure if you’ve read Good Energy by Dr Casey Means, but if not I think you’d love it. She was a Stanford medical school trained doctor who left the profession. She’s now trying to inform everyone on the corrupt food industry and how to take care of your body at a cellular level. Tucker Carlson just interviewed her and her brother (a Harvard business school grad who worked in big pharma) and it’s mind blowing. I know some people have big feelings on Tucker, but this is not a political podcast – he’s just asking the questions. I think you will love it!
https://open.spotify.com/episode/1gaa5mOEUdQgl3EgoYIXPJ?si=Vf0p2nQyROGY3Jh-Iqy_1Q
Mix and Match Mama says
I have this book on my “list”! I have heard her (and her brother) speak on podcasts and really, really like them.
Colleen says
Agree 100%. I’m an MD and she is SPOT ON with what is happening right now. Highly recommend that podcast and her book to everyone. Also don’t forget that typically gluten accompanies processed and “enriched” wheat (and also seed oils). So lots of people react to those elements thinking that gluten is the issue…ie, take it away, you get better. But really you just took away a lot of processed foods and that is why you get better. But either way, awesome for your daughter to have more freedom to choose her foods!
Susie says
Shay thank you so much for sharing this and to Kensington for allowing you too. As someone who has been down her own frustrating journey to get a diagnosis for medical issues, I can relate to this. It’s very difficult when the symptoms you present don’t fit in any “box”. Sending love to Kensington and you for your transparency with this community!
MIRANDA BODENHAMER says
Thanks to you and Kensington for sharing! One thing you consistently “teach” us (your followers) is grace. Thank you for showing grace to the medical professionals. Please have some grace for yourself also! My daughter has a pretty rare medical diagnosis and her GI actually sent us to another children’s hospital for a second opinion. This story just make me appreciate him even more because I never would have thought to get a second opinion. I always assume the medical professionals know more than me because my degree is in finance LOL! I now say (10 years later) that while I am not a medical expert, I am a Vivian expert. I am genuinely happy for your family that you get to start down a new path that includes Chick Fil A nuggets!!! 🙂
Mix and Match Mama says
The nuggets made me laugh because it was like she picked right back up exactly where her 11 year old self left off 😉 .
Kelly Kirkland says
You’re an incredible, momma! Nothing but love and support! Your blog is the BEST!
Susan Fitzpatrick says
I’m happy to hear this new info about Kensington!! My youngest daughter has had intestinal issues for the past few years. She has never been diagnosed with celiac disease but her doctor suggested she try a gluten free diet. It has helped her tremendously! Then I read a comment from one of your subscribers that they found out that fructan intolerance might be their issue and not gluten. 🤔 That’s something I think we need to look into for my daughter. Thanks for bringing this topic up and being so honest!
Laura says
Thanks for sharing! Happy for her that she has is well and able to have some gluten. You are a great mom and it clear all of your kiddos are lucky to have a mom doing her absolute best for them.
Also shoutout to Andrew for the rice and chicken info. Last week my 14 year old freshmen son asked for me to make rice and chicken so he could “bulk.” Needless to say this, Andrew’s tips helped me out and couldn’t have come at a better time 🙂
Mix and Match Mama says
Yay!! I’m so happy he could help!!
Beth Knecht says
This is such awesome news! I’m sure it’s hard to know that you turned your whole house and world upside down to go g-free, but here’s to hoping Kensington’s health will remain optimal!
I know a nearly 30-year old and 11-year old are at very different stages of life, but 4 years ago I developed a rash in very odd spots. It wasn’t severe enough to think celiac but went to numerous dermatologists and holistic chiropractor and they were perplexed. To the chiros suggestion they did applied kinesiology and suggested food intolerances. I eliminated the foods for a while and it helped, but then added the foods back and didn’t have the rash. We were almost wondering if it was something in our water that was causing the rash.
I wonder if perhaps Kensington had an intolerance or maybe it was a chemical. I’m not a doctor but have experienced similar issues and never found the true culprit. I’m so glad to hear it seems she doesn’t have to eat g-free!
Erika Slaughter says
Yay for K! Bring on the gluten!!
Keisha Dawson says
This is wonderful news! Thank you and Kensington for sharing this with us!
Dawn says
Kensington/Shay….Girls…..if it had been me on that second diagnosis it would have taken every ounce of fortitude I had not to peel out of the doctor’s parking lot, tires squealing, and head straight to the nearest bakery and set up shop at a table. Thankfully, there are some more mature people in the world, such as yourselves, that take it cautiously and carefully as one should. Glad for your news! Take care!
Mix and Match Mama says
Well this made me lol! Thank YOU! xx
Angela M Price says
Thank you for what is going on with Kensington. We have had our own celiac possible issues at home. After a lot of complaining of stomach issues (even at Disney) we had our 5 year old’s doctor do a full blood work up. Celiac came up high and they sent us to a gastro doctor. He immediately said we we needed to do a biopsy. It came back negative and then he said we need to do more blood work? shouldn’t he have recommended that prior to the biopsy? She also has had a lot of skin issues and other random things going on, that i thought was related to it.
Shawnna Griffin says
hey girl- this is some exciting news! Praise the Lord. I am so happy Kensington is ok! Love you and your family Shay. I will keep praying for y’all to.
Liz Kelley says
I remember seeing that picture of Kensington’s sweet little face all inflamed and was just so glad that you all had an answer. Doctors get it wrong ALL the time – I have total respect for the profession but they’re humans just like all of us. I don’t think you did anything wrong and I’m sure you helped a lot of people who do have gluten allergies and needed a supportive community. But I really appreciate your honest and transparency with this!
Erin says
Dont be too hard on yourself about the past- you did what you thought was best 5 years ago with the info you were given from a doctor. Happy you discovered this now and she can live her life without any limitations!
Skye Rose says
Gee, Shay, I saw your post and my heart gladdened, even before I knew what you were going to write about. Funny how that is. You make me smile. Thank you for that. I was surprised by your post. And happy you were willing to admit to a mistake from your past. Kudos to you and Kensington, for righting a wrong and making it public. Thank you for being you. Keep up the good works and the good words. Love you for all you do to make the world a brighter place to be.
Stacey says
This hasn’t happened with us with gluten, but it has with penicillin. I was diagnosed in my teens with a severe penicillin allergy after a terrible reaction that swelled my eyes shut and caused huge and painful welts on my body. About 6 months ago, my 2nd daughter had a similar reaction after being on medication for an ear infection. Knowing it was in fact hives given my experience, I took her in and yes, she was diagnosed with a pending allergy. A few days later we saw an allergist who did not think that was the case at all – she felt very strongly that our daughter’s reaction was just how her body was fighting off the virus (fever, welts, etc). She informed us some have an incredibly strong reaction to their illnesses and go into hyper-over drive, and some do not. In fact, my daughter actually always has temps around 103* when she’s sick, so it started to add up. From there she tested my daughter’s back with high adult levels of penicillin (definitely terrifying), but absolutely NOTHING happened, further proving her point. When I brought up my penicillin allergy to her from 30 years ago, she said, it was the norm then to label all reactions penicillin allergies. She said if we retested everyone from that era, most likely over 1/2 of us would be completely fine and SHOULD be taking penicillin as the benefits far outweigh the negatives.
We are all learning and I wouldn’t have done that 2nd opinion if we weren’t encouraged to see the allergist to learn more.
Glad she’s doing great! That’s what matters most!
Mix and Match Mama says
Wow!! Thank you SO MUCH for sharing this with the group, Stacey!! xx
Mary Ellen says
My Mom just found out at age 75 she does not have a penicillin allergy at all! Her whole life she thought she did- exactly what you said they labeled all reactions as penicillin allergy just to be safe when a large number of people are not allergic at all. She just has strong reactions to viruses (rash, high fever, welts, swollen eyes)
Jen says
This happened to my daughter, too! Her very first illness at around 6 months old, they prescribed penicillin and she developed an all over body rash. From then on the doctors said she had a penicillin allergy. When she was around 9 they decided to test her with penicillin and she was absolutely fine. They said rashes must just be a reaction to how her body tries to fight infection. SIGH.
Gail says
I just wanted to say that when our teen son was diagnosed as celiac this spring, your original post was the first place I went. He also was not primarily diagnosed from stomach issues, but going gluten free has been transformative for him. I’m sorry Kensington was misdiagnosed and so glad you have some alternative recommendations, but in that moment I was very grateful for being able to reference what you shared and feel like it would be manageable to be a celiac teen (which it has been!) so – thank you for what you shared then and hooray for what you shared today!
Kathy says
I’m so thankful for her!
These things happen. I’m rejoicing with you all.
Susan says
Thank you and K for sharing. I’m so excited for the holidays and wonderful TJ’s snacks you all will be enjoying this fall!
There should be no guilt or should have done differently in this case you had faith in what was presented and what got K back to healthy and ran with it. Any/all of us do what is necessary for our kids and don’t think twice about it. a second opinion when going thru that is the last thing from anyones mind. Take grace and move forward happily enjoying food and life!
JT says
I bet your resources and recipes helped a ton of people…maybe that was God’s plan with the wrong diagnosis. 🙂
Dawn says
Oh, your sweet Kensington ! She is so brave and generous to allow you to share this with us. Shay, you are always doing the best you can! Praising God for Kensington health!
Jennibell says
Amen!!
Laura Holmes says
So happy for Kennsington’s good heath news! Thank you for being open and honest both then and now. It could be helpful to someone in both circumstances. Yay to chic fil a!
Brooke says
If you don’t mind sharing, what was it about the original blood work and biopsy that made the new doctor think it might not actually be celiac? I was recently diagnosed with celiac and I’m really hoping it is a false positive, even though I have no reason to believe that. Haha
Mix and Match Mama says
I would just suggest having one more set of eyes look at the same data. It can’t hurt, right?
Deb says
I’m happy for K and the family that you can lighten your restrictions! We had a misdiagnosis on my oldest of ADD way back when. It turns out as he got older and couldn’t keep a job he is on the spectrum and not AdHD at all. I wish we’d pursued things also
Jeanette says
Thank you and Kensington for sharing this!
Courtney Burkholder says
Well I think this is awesome news! Bring on the bread! In moderation of course! 😃😃
StephC says
Thank you for sharing this and to Kensington as well for allowing it. We as parents can only do our best in the moment and I know that you and Andrew did that. You can only learn from what you go through, and this experience will help inform your future decisions so they are even stronger. Rejoicing for all of you that she can have food flexibility now! Hugs!
Rhoda Watson says
Shay, thanks for being so candid. This is a great reminder to everyone that doctors are not God, They are human and get stuff wrong some times. I shouldn’t think anyone is diagnosing gluten intolerance or celiac based on anything you write on your blog so you have no need to feel trepidation in telling everyone about the misdiagnosis. I think gluten sensitivity is a valid dietary consideration for anyone experiencing GI or allergy/inflammation symptoms. I actually feel better, less bloated and inflamed the less gluten I eat.
And, Yay for Kensington that she doesn’t have to deal with having her food choices limited to gluten free!
Sheaffer says
So thankful for this new for K and y’all!!!
Beth Hall says
These things happen. You have let everyone know. Don’t beat yourself up. You did what you thought was the right thing at the time. Nothing wrong with being g free for several years.
I have identical twins, one severely allergic to peanuts and other foods, the other, not so much. Drs told me to treat them the same so me or childcare staff and teachers wouldn’t get them mixed up and give the wrong food to the wrong child. So we followed that advice. And one day many years later, once adulthood came, we had to explain to them that one of them wasn’t as allergic as the other and could probably eat peanut butter. And could have this whole time. We paused and they were like wow and the non allergic twin said “nah, I’m good”. She wasn’t bothered at all! I was SO WORRIED. For no reason. She still eats a peanut and tree nut free diet at age 23.
Mix and Match Mama says
Thank YOU for sharing this!! I’m grateful for it. xx
Natalie Lyles says
Girrrrl!!!! I’m celebrating! That is a huge PRAIsE! Thank you Jesus!
JL says
The Lord is Sovereign! Trust Him – this is part of K’s story and your whole family’s story! You certainly did NO HARM by eating gluten-free and everyone learned a lot together;) You may continue eating that way, may not! 2nd opinions are always wise bc you are dealing with humans, they may be doctors but they are human!! They don’t know everything. Trust the Lord and His timing. As a mama who has 3 adult kids – the time flies and they are not ours, they are the Lords…you are just a part of His plan in raising them. Point them to Him in all things, life is short & He is returning soon – that’s all that truly matters❤️🙏
Samantha says
Shay, you’re such a good mom. Being in charge of managing medical concerns for your child, particularly medical concerns that can present atypically and have information that is still evolving is so challenging. Thank you for the reminder to get a 2nd opinion. I’m so sorry that your family had to make so many modifications when you didn’t actually have to.
Katie Stewart says
Listen, I won’t repeat what so many others have said… I’ll just say this.
My youngest had some digestive issues when she was 4 weeks old and I spent a few weeks (every business day for 3 weeks) in a doctor’s office. I felt crazy, I felt terrible for my newborn, I felt embarrassed to be meeting with these doctors, insert all of the adjectives.
On the very last visit and finally getting a solid answer/diagnosis/plan, I told the pediatrician that I was so sorry to be a bother but I couldn’t rest until I knew what was going on and how to help my baby. I was SOBBING. He patted me on the back and said, “Oh honey, it ain’t the moms like you that get under my skin… it’s the ones I never see.”
That has always stuck with me. You’re doing great, mama! And, Chick-fil-A is life! 😝
Nikki says
I think you may need a 3rd opinion. I know you had posted that Kensington had an intestinal biopsy that came back positive for celiac, after her blood test showed it was also positive for celiac. At that time, you eliminated gluten and it’s been many years since that occurred. After a year on a gluten free diet, over 80% of patients who had positive tTG-IgA will revert to a negative tTG-IgA. That can make it appear that they no longer have celiac, however I believe it’s more likely that the celiac has gone into remission. Based on what I know about it (my stepson has celiac), once you have a positive biopsy, the patient should always eat a gluten free diet or that damage can start occurring slowly over time again. So while it’s great she’s doing better, I would not assume that over the course of a few weeks of eating gluten that she would have positive blood markers again. I think it may be wise to consult with a 3rd GI specialist and see what they think before taking her off gluten permanently. If she never had an intestinal biopsy, then I suppose they could have had a misdiagnosis, but I think you had posted that she had the biopsy.
Mix and Match Mama says
Like I said, I’m not sharing all of the details, but we did have outside opinions well beyond the new GI doctor and all of them have drawn the same conclusion at this time. Again, should anything change, we will make adjustments as immediately.
Michelle O says
So happy for K!!! I think it’s great that you and K shared this. I’m sure that you are going to have a parent that will think now about getting a 2nd opinion for their child… or even for themselves. Thank you and K for sharing. Now get that girl more Chick-fil-a nuggets!
Lindsay D. says
That’s amazing news!! So happy for Kensington!! Just to not have to worry about it.
Kellie says
You handled this well – smart to be upfront with your readers (even though it’s really none of our business.) My daughter has been dealing with difficult chronic issues for over 7 years and the amount of conflicting opinions and diagnoses she’s received is so frustrating. (Coincidently, I was just listening to a podcast yesterday and the guest doctor strongly encouraged people to get 2nd opinions whenever possible.)
I hope K continues to feel well and has a great school year.
Margaret says
Wow what great news. I am late to this post but so happy for Kensington! As a mom of four, I have had some similiar experinces thru the years with wishing we got a second opinion or did not rush to a treatment the Dr offered… I think much of the world is wakening up to the medical industry, critically thinking a little more and questioning everything. I had a child who was not feeling well with some odd symptons and her peditrican wanted to do a stool culture – he came back in the room and said it tested postive for blood in her stool – he was very concerned – sent us to a GI dr ASAP and said we needed an immediate endscopy and colonscopy – we were all a wreck, stressed and probably acted a little bit like alarmists 🙂 Fast forward – the results were nothing, but a littel acid in her intestine that was quickly resolved -and later learned that the stool culture was a false positive most likely from the huge filet mignion she had the night before 🙂 Who knew steak can cause false postives as blood in stool??!! But we all do now and I will always have a second culture done to confirm before acting on it… to think if we would of just done another stool sample the next day, we could of avoided so much stress, going under etc… it drives me nuts as a mama when I think about it, but we must fall back on our faith and belief that there was a reason even if we never know or see it. God works in mysterious ways!
Tell Kensington she is a star for allowing you to share her life here and for being discplined in her no gluten years that she handled it like a champ! She is at the age now where she will be able to notice any changes in the way she feels from the food she eats – wether that be gluten or anything else. What a happy surprise for her sophmore self. Wish her the best year and know she will crush it in cheerlaeading and volleyball! Hope Andrew spine surgery was a success and sure nurse Shay is busy 🙂
Jinjer says
I worked with doctors for 8 years and, believe me, they do not know everything and are not gods. A lot of them you would not have them as a doctor if you knew them as a person. But that’s not the point of my comment. 😀 I just wanted to say that I have a friend who was told for years she had an allergy to raw apples and nuts. Avoided them like the plague. Until one day she ate them and discovered is NOT allergic to them and wonders if she ever really was.
In the end, the good news is K seems to be doing great, gluten or no gluten, and going g-free was not a “bad” thing for any of you.
Thanks, K, for sharing your journey.
Candice says
Also something I thought I’d share in case it may help anyone …many viruses can present with intermittent generalized body rashes. And it may be the only sign you see from the virus! Just something to keep on the differential to bring up with your doctor if you develop a rash! (It’s something that’s happened to me and several patients I’ve had in the past)
Christie Elliott says
My daughter had positive bloodwork for Celiac and bas an endoscopy this week to confirm diagnosis. I remembered your daughter having Celiac so I came on here to re-read her story and was surprised to see this post. We don’t have true “confirmation” yet but I was curious if you would mind sharing if your daughter had a positive Celiac screen via bloodwork and an endoscopy with positive biopsy at the time? What amazing news to learn she does not, in fact have Celiac!