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Dermatitis Herpetiformis After Going Gluten Free?

sclarkey2003

By sclarkey2003
in Dermatitis Herpetiformis

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sclarkey2003 Newbie
sclarkey2003
Posted

I was diagnosed with celiac about a year ago by accident (I have always been symptom free). Even though I had trouble sticking with the diet at first, I finally went totally gluten-free this past summer. Recently, I've had this rash on my neck. At first I thought it was from my necklace but it only seemed to get worse after I stopped wearing it. I checked it out and it looks a lot like the pictures I've seen of dh ...

Is it possible that I could get dh now that I'm totally gluten free, after never having symptoms before going gluten-free?? Any thoughts would help ... thanks!

Sarah

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LauraZ Rookie
LauraZ
Posted

Hi Sarah,

My only thought is that since you are now totally gluten-free, if any gluten sneaks by at all, it might create more symptoms than you originally had. I say this because, before her diagnosis, my daughter used to have gas pains every few days. They lasted only about 15 minutes and could be helped with Gas-X. After the gluten-intolerance diagnosis and being gluten-free for almost a month, any tiny bit of gluten will wipe her out for two full days with stomach pains/diarrhea.

Have you had the rash for a while or is it more recent?

sclarkey2003 Newbie
sclarkey2003
Posted
  • Author

I started getting a rash/blister on one side of my neck at the beginning of september and then got another two on the other side only a few weeks ago. The first one is mostly gone but the two newer ones are definitely still there. This is the first time I've noticed anything liek this but I have only been completely gluten free for about two months...so what you said about getting more symptoms after going gluten-free could definitely be true.

sarah

LauraZ Rookie
LauraZ
Posted

The one thing that had gluten that I didn't even think about eliminating until my scalp/neck still got sores was my shampoos. Almost everything I had either had wheat or oats in it. You have probably already checked this, but just in case...

Laura

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

Check with your GI or dermatologist.

They could prescribe Dapsone for you -- that should help if it is DH...

  • 2 weeks later...
sclarkey2003 Newbie
sclarkey2003
Posted
  • Author

Since I'm originally from MA but go to school in New York City, I haven't been able to see my regular doctor. I went my school's Health Services, but couldn't find anyone helpful. The doctor I saw had never heard of DH before so he did a little "research" while I was in his office. He googled it, read an article about it and told me that "since it normally occurs on the elbows, knees, buttocks, etc and since mine is on my neck, i DEFINITELY don't have it". Wow he had no idea what he was talking about. Anyway, he gave me a prescription for a topical steroid cream and I'm not sure if I should use it. Any ideas? (I left a message with my doctor at home and she's on vacation so I can't get in touch with her)

Claire Collaborator
Claire
Posted
Since I'm originally from MA but go to school in New York City, I haven't been able to see my regular doctor.  I went my school's Health Services, but couldn't find anyone helpful.  The doctor I saw had never heard of DH before so he did a little "research" while I was in his office.  He googled it, read an article about it and told me that "since it normally occurs on the elbows, knees, buttocks, etc and since mine is on my neck, i DEFINITELY don't have it".  Wow he had no idea what he was talking about.  Anyway, he gave me a prescription for a topical steroid cream and I'm not sure if I should use it.  Any ideas?  (I left a message with my doctor at home and she's on vacation so I can't get in touch with her)

<{POST_SNAPBACK}>

I have to butt in on this one. DH does usually appear on elbows and knees - however, my friend's husband has this skin problem and his has appeared on the scalp, on the neck - and a very few times on his face. So much for doctor's who learn from the internet while the patient waits. If he had gone further he would have found more. But what can you expect in one office visit. :lol::lol::lol: Claire

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      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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