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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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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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