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Dermatitis Herpetiformis or something else?? General help appreciated


lehum

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lehum Apprentice

Hello All!

I am a little perplexed and looking for some help. I have been gluten-free since being diagnosed with Celiac in February of 2021, so a little over two years now. I am still experiencing some symptoms, although I am SO careful. Lots of fatigue, loose stools (not diarrhea, but just loose/fatty) and a general feeling of stomach discomfort. I really am very careful with my diet, only cook at home. etc. Somehow I have managed to have reactions to products like maple syrup or even certified gluten-free quinoa. Am I unbelievably sensitive or do things like that happen to others too? 
Many times after eating, I notice that my elbows will be slightly red. They never break out in a full blister rash like the way I understand Dermatitis Herpetiformis to be,  but they look a little irritated. Could this be a sign of trace gluten in things? Maybe it could be something else? 
My original antibody could was in the 1,120 range. In the last two gluten-free years, it has gone down to 40, where it was when it was last checked several months ago. My doctor says that I must be still making dietary mistakes because it should be below 20, but I have read elsewhere online that it can take some people as long as 6 years to actually sink so low if the original count was so high… 
It is kind of driving my crazy because I feel I am being remarkably careful and just can’t wrap my mind around what could be going on. If anything jumps out at anyone reading this that sounds like I might be missing and someone wants to give me some ideas, I would be VERY grateful.

thanks so much and wishing a pleasant day,
Lauren 


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Scott Adams Grand Master

For some with DH iodine can also trigger the rash, so you may need to cut back on iodized salt, seafood, and dairy to see if that helps.

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    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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