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DH - The usual Suspect


Danzig

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Danzig Newbie

Hello everyone :)

I've been reading this invaluable forum for a while now, but this is my first time posting.

 

I'm 35, and my first breakout happened on the 4th of July of last year. I thought it was allergy from being in the woods or some type of contact dermatitis. I had extreme burning on the back of my knees and elbows. They got very hot and eventually blistered. They completely healed the next day with no scarring.

 

Since then, I've been having on and off episodes of flaring on another spot; the left side where my thigh meet my buttocks. It gets raised, red, very hot, and the most distinctive symptom is a burning sting. Although it's sometimes itchy, however, it doesn't drive me crazy as everyone describes DH, it just burns, and it's always that same spot. It's a perfect oval shape now, and although it heals wI think a day or two, it's always dark. My spot flares when I eat gluten mostly, but I haven't established a consistent causality, sometimes it does while sometimes it doesn't.

 

My doctors suspected herpes at first, and those came back negative. Then I did the gluten blood test which was normal. Another doctor decided it was a fixed drug eruption, and gave me a steroid which has been helping a lot. However, I'm still getting the flare ups evens after I've cut all of my medicine, and again the flare ups come usually after eating gluten. He did a biobsy from the lesion site, and it didn't show anything except some type of contact dermatitis. Of course I read here that the biobsy should've  been taken from the surrounding area. Now they ordered a blood test for celiac that's only done in another state, and will take 2 weeks to get here.

 

I've had pizza yesterday, and withing 2 hours my spot was on fire, very lumpy and hot. The steroid immediately helped bring it down, and I've been fine since.

 

Does this sound consistent with DH? Any other suspects or suggestions?

 

Thanks a lot!

  • 3 weeks later...

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GFinDC Veteran

Hi Danzig,

I am not sure if that fits DH or not.  I believe DH can start small and spread over time though.

ravenwoodglass Mentor

Have you been for the most part gluten free? if so your blood test may show a false negative. Be sure to let the doctors know if you haven't been eating gluten. If that is the case you will need to do a gluten challenge for testing. Steroids will also impact the blood testing. I don't know how long they would need to be stopped before testing. Perhaps someone else will advise on that.

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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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