Celiac symptoms

[Dana0207]

My journey started last year in May. I had yet another laparotomy and started developing a patchy rash in several areas on my face trunk, top of buttocks about a month later that was non responsive to steroids. The rash really flared after larger amounts of wheat in October (I went on a baking spree when we were hit with two hurricanes back to back and had too much time on my hands). At one point it became painful and some areas were raw. I did some reading and began to wonder if the rash was gluten related and stoped eating any kind of gluten not realizing that might make diagnosing harder in the long run. I have always had some issues after eating wheat based foods with bloating, constipation, water retention, bouts of diarrhea that I always attributed to lactose. However, since avoiding gluten completely my symptoms are getting a lot worse with accidental exposures after a “nice” person must have used the pasta spoon on the potato salad at a work event. The hotel was super nice and went out of their way to try keep me safe. Even labeled all the foods but it was buffet style. My last exposure was a few days ago and I almost passed out in the bathroom from the diarrhea. I am still not right and this was 5 days ago. Is that typical? I have so far not been diagnosed with celiac and will have to wait for the new blood test to come out as there is no way I am voluntarily eating gluten now. I ordered some gliadin x in the hopes that might help for future exposures. Does anyone have experience with it? Any feedback/advice would be welcome as I am still really new to all this. 

[trents]

Welcome to the forum, @Dana0207! Another diagnostic approach would be to get biopsied for dermatitis herpetiformis which would not require an extensive exposure to gluten. But it would need to be done during an active outbreak of the rash. Celiac disease is the only known cause for dermatitis herpetiformis so it would be a definitive diagnosis. It might be tricky, however, to time the dermatology appointment with the gluten exposure and outbreak.

[Scott Adams]

I agree with @trents, and the rash you described, especially its location and resistance to steroids, sounds highly characteristic of dermatitis herpetiformis, which is the skin manifestation of celiac disease. The severe and prolonged reaction you're describing five days after a small exposure is, while extreme, not unheard of for those with a high sensitivity; the systemic inflammatory response can absolutely last for several days or even weeks, explaining why you still don't feel right. Your plan to avoid a formal gluten challenge is completely understandable given the severity of your reactions, and many choose the same path for their well-being.

While experiences with GliadinX (they are a sponsor here) are mixed, some people do report a reduction in the severity of their symptoms when taken with accidental gluten, though it is crucial to remember it is not a cure or a license to eat gluten and its effectiveness can vary from person to person. For now, the absolute best advice is to continue being hyper-vigilant about cross-contamination—buffets are notoriously high-risk, even with good intentions. Connecting with a gastroenterologist and a dermatologist who specialize in celiac disease is essential for navigating diagnosis and management moving forward. Wishing you a swift recovery from this last exposure.

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

[Dana0207]

Thank you so much for your replies. Luckily the rash went away when I completely swore off gluten. It took several months but I have not had a flare in months. So a biopsy is no longer possible. The itch was terrible and apart from bleaching my skin the steroid lotions and potions did nothing. The Gliadin is for accidents and shall be a part of my travel kit from now on. This past exposure has made a me a little leery about eating anything that was not cooked in my kitchen or a dedicated gluten-free restaurant. As much as I used to love baked goods, I am cured and have become quite the gluten free baker to the point that friends and family forget that my cakes/cookies/and bread are not "real". I guess I will have to wait for the new blood test to come out to get confirmation but I have a suspicion that the rash was dermatitis herpetiformis.