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icuski2

Gluten-Free, But Now Dh?

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Hello everyone. I was diagnosed with Celiac 14 months ago and have been gluten-free ever since. I never had any lesions or rashes when I was eating gluten or the 13.5 months after stopping. However, this past week I got two patches of somewhat itchy, very painful patches of a blistery rash on my upper thigh and a hip. The areas almost seemed bruised, purple-ish and sore underneath with bright red blisters on top. I'm wondering if it could be the DH I have heard about?! If so, does it mean I got in to some gluten? (I try to be very compliant in my diet, but I am not super sensitive - stomach issues wise - to when I do get some gluten accidentally.) Or in reading here, seems it may be connected to iodine? I am confused. Once you get it, does it come back easily? And always in the same spots? If I do get it again, is there anything I could/should do to clear it up? I don't really have a medical professional treating me for the Celiac, so I find this website my best source of information. Any suggestions/ideas/information is much appreciated!

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I read through the archives of DH and learned that yes, it seems to happen to some people, that they get their first outbreak of DH AFTER going gluten free. I cannot say whether your rash is DH or not, but the blistery rash does make one suspicious that it could be DH. If it is, you could get it biopsied next to the lesions on clear skin and that is considered a postitive diagnosis for Celiac disease. If however, you do not want to go that route,(bear in mind that your biopsy can also be negative if you are not eating gluten) then you will need to be super strict about avoiding gluten and iodine until the lesions heal. Iodine can keep the antibodies reacting and the lesions will continue to be active. I had to avoid iodine strictly for 3 months in order to heal my lesions. I was being super strict about avoiding gluten but really didn't start to get healing of the DH lesions until I started to strictly avoid iodine too. No salty nuts or chips, only ate meat, chicken, vegetables, fruit and nuts. Iodine is in asparagus, fish, shellfish, eggs, dairy, and iodized salt. You can use uniodized salt until you heal. I am just starting to add small amounts of these foods. Until now, I would get the same reaction I get to gluten...the sores would flare and hurt or itch like mad...they would seem to start healing and then flare again with the slightest intake of salted foods or fish. Even with avoiding both gluten and iodine, it has taken a full 3 months to heal and I still have a couple of spots that are not quite healed.

It is really maddening. I hope you heal faster than I did.

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My husband developed DH after going gluten free with me, but only after he had been cheating a bit, with a little sourdough french bread here, an occasional beer there :o Made a believer of him (he had been told he was 'borderline' celiac). :P

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icuski2: I was much like you, for fifteen years I casually avoided gluten because I knew I was sensitive to it. I wasn't very strict. Then I went back on gluten for a couple of days because my gastrointestinal symtoms had disappeared. Within days I started getting a severe rash that turned out to be DH.

The DH is much more sensitive to gluten than my GI symptoms ever were. Also, many people are sensitive to iodine as well, because iodine is part of the process by which the DH symptoms appears though they are not the cause of DH. In theory, once we have completely eliminated gluten, and the DH factors in our skin have cleared (a slow process often taking months) then we won't be sensitive to iodine and can consume it normally in our foods.

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Is HD similar to Eczema? I have been told my whole life the reason for my itchy skin is because of eczema. Are these two skins problems related or one and the same?

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gfreegurl: they aren't the same thing. But many physicians will diagnose DH systems as eczema. Mine admitted that the lesions on my arms were DH, but insisted that the somewhat different looking rash on my shins were eczema. Ignoring my protestations that both 'stung' rather than itched and both were improving with a gluten free diet.

If you are celiac and have itchy rashes, I would suspect DH.

I had various minor but persistent rashes and bumps on my skin for years which either morphed into DH or disappeared when I when gluten free.

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