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kiwi kate

Dermatitis Herpetiformis

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hi i have recently moved to the US and ever since have been having a lot of trouble! it first started with feeling so low of energy i could hardly do my job! every day was a task and i found myself breaking down on several occasions thinking life isnt supposed to be this hard.. it never was before! then i decided to go on a health kick thinking it was just the change of food.. i was eating mostly salads, fruit and meat (gluten free by accident) and when i tried to cheat one night.. with a beer, burger and cake wooooowe did i pay for it. i was doubled over in pain and could hardly move. from then my symptoms have only gotten more extensive. blood in my stool, itchy all over, foggy mind and hard to concentrate, gas and diarrhea, tingly hands and feet and once even vomiting. i have attempted a gluten free diet for about 2 months now but i must say not very successfully, not often going more than 2 days without a small amount of gluten. i am wanting to get a test done in 2 weeks and have just developed this rash on my bottom. i am almost hoping it is this celiac rash as it would just be a relief to be diagnosed! i know its a horrible disease to have but at least i would know exactly what i have what to do and commit to.

the question is does anyone know if the fact that i have just developed this rash mean my test would be positive?? or have is it still a possibility i haven't been ingesting enough gluten recently to get a definitive test result??

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It's really hard to know anything when it comes to DH testing.

The rashes vary in appearance greatly, sensitivity to gluten varies, frequency of breakouts varies....it's all over the place.

A new rash is better to biopsy than an old one, one with clear edges is best, and if you are actively eating gluten its said to be better for testing (UK sources I believe).

I noticed my rash got worse before better then at apx. 5 months gluten-free the outbreak I had was dramatically less severe (assume iga levels fell in my skin) - the outbreak was so mild I didn't bother calling my derm for a biopsy.

A biopsy at 2 months gluten-free would have been in my rash's "raging glory".

There's no harm in trying, especially if you're trying for a dx.

Other skin diseases are associated with gluten - psoriasis, eczema, etc. If it isn't DH (or doesn't get biopsied as DH) don't get discouraged. If going gluten-free makes your symptoms go away, then your body needs to go gluten-free.

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the question is does anyone know if the fact that i have just developed this rash mean my test would be positive?? or have is it still a possibility i haven't been ingesting enough gluten recently to get a definitive test result??

I believe it depends on the type of test. If the rash you have is DH, then an endoscopy may not yield a 'positive'. There's also one of the blood tests (IgA I think?) that will only be positive if you have total villous atrophy. But if you have DH, then there are some of the other antibody tests that may be positive, since having the rash would indicate there is some antibody activity. Or, are you having the DH biopsied? That's another possible test, if so then the biopsy needs to be on a clear section of skin next to a blister.

Knowing what kind of test or tests would probably make it easier for those who are more expert to give their opinion.

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I think your test was pretty conclusive (the dietary restriction and challenge), but people with DH often test negative on blood, intestinal biopsy and skin biopsy. Yet they tend to be extremely sensitive to even traces of gluten or cross contamination. You can try to get tested but your body is telling you loud and clear...just in case the tests are negative. You can still be Celiac even without a Dr.'s diagnosis or positive tests. And you can still eat gluten free if you want to. If your symptoms go away...that is what it is. The DH rash is sensitive to iodine for some people. If yours is, you can follow the Thyca.com low iodine diet to help speed healing.

From reading many many posts, not many dermatologists will agree to do the biopsy, and if they do agree, they do not know how to do it. Just to let you know.

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