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Dermatitis Herpetiformis or something else?? General help appreciated

lehum

By lehum
in Dermatitis Herpetiformis

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lehum Rookie
lehum
Posted

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
Scott Adams
Posted

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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