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DH Symptoms - How do I test?


susher

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susher Newbie

I just stumbled on the description of Dermatitis herpetiformis and this describes the rash I get on my hands exactly to a T. I first got it when I was 21 and thought I was allergic to baby wipes. Since then, I get random breakouts during the course of the year. Reg doctors just told me it was a stress exzcema and gave me steroids. But it always comes back. I tried an elimination diet and noticed a difference when i cut out Gluten, but didn't see immediate outbreaks when i reintroduced it so i didn't think it was working. Now this a-ha moment.
So my question is....

Who do i go to truly get tested? A dermatologist, an allergist or a specialist? Help! I want to cut out gluten as soon as possible but want to get tested first. Thanks.


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ravenwoodglass Mentor

Your regular GP can start the ball rolling by doing a Celiac panel and referring you to a dermatologist. Taking steroids will effect the results of testing for celiac so if you have taken then recently let the doctor know. Keep eating gluten until all testing is finished for celiac. Make sure the derm knows how to biopsy for DH. The sample needs to be taken from beside an active lesion not on the lesion itself.

squirmingitch Veteran

Those with dh test negative the celiac blood panel 60% of the time. IMO, the fastest way to get dx'd is to go straight to a derm who is well versed & has experience with dh & how to properly biopsy it. A dx of dh is a dx of celiac & no further testing is needed. As ravenwoodglass stated, you must continue to eat gluten until all testing is done.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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