Context: I’m F35, I have two siblings diagnosed with Celiac. A couple years after their diagnosis, I went gluten free because it seemed like it reduced my migraines and facial dryness and sensitivity. So I’ve been largely gluten free for 15 years. But I would cheat while on vacation out of the country or in times of stress, and literally nothing happens symptoms-wise unless I eat it for awhile (maybe off and on for a few weeks or a month). Also have not been strict about cross-contamination. Only in the past 5 years, (about when I turned 30) would a very DH-like rash appear after periods of too much gluten.
Flash forward to fall of last year— I’m seeing a gastroenterologist for random abdominal pain and persistent anemia. She says, ‘you have the family history, let’s go ahead and do the celiac blood test.’ It’s negative again. We do an endoscopy and colonoscopy. No intestinal damage— that’s good! But I’ve been eating gluten daily since Nov. of last year and even though the rash is actually smaller than in years past, I’m still getting weird blisters I’ve never had before while eating more gluten than my body has had in 15 years.
I scheduled with a dermatologist that the internet told me had advanced experience with DH. I do have a spot on my stomach right now with multiple active blisters and no inflammation around them. Today he tells me again (second visit) that he can’t do a biopsy because the rash isn’t big and red enough. This seems to contradict the sources online that said the inflammation actually destroys the antibody you are looking for. I also think he’s not very knowledgeable about this because at our first visit when I explained my endo/colonoscopy he said something like, “Did they say your celiac’s disease is gone now?”
I don’t know why with eating more gluten my rash is less intense and expansive and more blistery than before. But does that seem right, that they wouldn’t find anything if they tried a biopsy near several blisters?
I am positive that I should be gluten free (I think it does increase migraines, makes my hair fall-out more, even caused some digestive issues, the longer I’ve been eating it) but I hate this ambiguity about my inconsistent symptoms, because I want to know how strict I need to be about cross-contamination and understand what my sons could have inherited from me. I just want to get as much understanding as science can give me and also not to have all this time eating gluten be for basically nothing. Should I try to find another dermatologist?