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Does Dh 100% Mean Celiac?

phil1

By phil1
in Dermatitis Herpetiformis

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phil1 Apprentice
phil1
Posted

I tested negative for celiac 6 years ago, but since have cut out gluten and felt much better (still have lots of problems though). My sister cut out gluten, too, and no longer has any problems. I have DH and it was a lot worse when I was eating gluten, but I still have it. I'm seeing a doc on Friday, a celiac specialist, and I'm hoping that he can confirm that I have celiac based on my DH and dispite my negative test results from years ago. I refuse to eat gluten for 3 months or how ever long it is for regular celiac tests. Can he diagnose celiac by diagnosing DH? I'm afraid that he's going to assume that I don't have celiac based on my previous test, and I'm pretty damn sure that I have it.

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psawyer Proficient
psawyer
Posted

My understanding is that a diagnosis of Dermatitis Herpetiformis is absolute confirmation of celiac disease. The treatment is the same: a gluten-free diet for life.

If your DH persists, look for possible gluten sources that you have missed.

pricklypear1971 Community Regular
pricklypear1971
Posted

If you are seeing a Celiac specialist he should know the nuances of dh.

Testing may be problematic if you are gluten-free because even dh testing depends on finding IgA antibodies-which fall even while dh remains active when you are on a gluten-free diet.

You may get lucky and be dxed based on visual inspection and symptoms and history. It's worth a try.

You should look into a low iodine diet, as well as intolerances like salicylates. Those can keep dh active even on a gluten-free diet.

eatmeat4good Enthusiast
eatmeat4good
Posted

Iodine can keep the DH active.

I didn't heal until I eliminated all traces of gluten and went low iodine.

It took me 14 months to get healed. As Peter says, look for traces of gluten. I missed several things and was always surprised at what a violent reaction my DH would have even to low level trace glutening.

See thyca.com for a low iodine diet. (it is not a no-iodine diet)

We do need a certain amount of iodine but limiting it is sometimes necessary for the healing of DH.

DH is Celiac. A skin biopsy can diagnose it but it is not always positive even if it is DH. As Prickly pear says if you are gluten free the chances of testing positive go down. My Dr. gave me the diagnosis based on observing the rash and my repeated reports of glutening triggering the reaction again and another round of painful itchy sores. It took 3 years of treating it for impetigo, fungus, anti-virals, bacteria, acne, neurotic excoriation, until the day I stumbled here and realized it was DH and the cause was gluten. By verbal report of healing on going gluten free and the Dr. observing the healing...I was diagnosed. For some reason my rash is also sensitive to salicylates. I often took ibuprofen for the pain and itching and inflammation of DH. On reading I learning that many with DH are particularly sensitive to NSAIDS and they should not be used by those with DH. Just some tips. Hopefully the specialist will help you. Good luck.

itchy Rookie
itchy
Posted

I tested negative for coeliac for many years.

I was finally able to convince a dematologist that I had DH, though paradoxically he refused to give me a formal diagnosis without me eating gluten for a while and having my skin biopsied. Needless to say, I refused to torture myself that way.

I suspect many physicians and dematologists will also refuse a formal diagnosis. (I hope anyone with opposite experience will post) So far I haven't needed a formal diagnosis for anything though I can see that it might be important at some time. A medical insurance company was quite willing to believe me when I said I had DH in order to turn me down for coverage of that condition, but I suspect that if I had made an insurance claim earlier they would have refused without a formal diagnosis.

Fortunately I live in Canada, so only need insurance for travel.

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