Dermatitis Herpetiformis

[vegan lisa]

Hi,

I have a skin "rash" on my stomach. (It isn't a rash, more like a handful of super itchy/stinging spots that look like chicken pox or small cold sores on my stomach that burst quickly and scab over.) It's been coming and going for at least 10 years, and for about the same amount of time that I had joint pain. The joint pain went away when I gave up gluten, and came back with a vengeance when I challenged gluten. The rash improved off gluten, but wasn't cured. It worsened somewhat when I challenged gluten, but it wasn't as obvious as the joint pain since the rash comes and goes anyway.

I've thought about being tested for DH, but I just don't know how to go about it. The dermatologists in the area are well known for their incompetence and poor ethical behavior, so I'd have to find a derm one to two hours away to find a competent one. Is competent good enough, or do I need a really fabulous dermatologist for this? Plus, the rash does come and go. Sometimes the sores stick around for 2 or 3 weeks, but often they heal quickly and suddenly. So if I go to a fancy dermatologist at a University hospital, it's a 2 hour drive, probably a 2 month wait for an appointment, and then I may or may not have symptoms?

It's a bit overwhelming, and I'd like some more information before I give up on it!

Thanks!

Lisa

Also, do I need to be eating gluten for DH to be diagnosed? If I'm off gluten, the antibodies won't be present, right?

[ravenwoodglass]

It does sound like DH. The antibodies can take a while to leave the skin so it does take some of us some time for it to resolve. Iodine will also aggravate it so when you go gluten free you also need to delete iodine for a while. The derm needs to be specifically looking for DH and they need to biopsy the skin right next to a lesion not the lesion itself. I have heard that you do need to be actively eating gluten for the best chance of a diagnosis. If you haven't been gluten free for very long you may want to omit the iodine and see if that helps. Here is a link to the NIH awareness campaign for celiac and DH.

Open Original Shared Link

[eatmeat4good]

I don't know how you find a knowledgeable dermatologist. I made appts with the chief of dermatology at 2 medical universities. Waited months for the appointments, drove hours, thought was seeing experts, explained my rash and was examined. Dismissed without a biopsy. I was given the same ole medications any regular Dr. would have given me for acne. They refused to biopsy. Unless you have a way of convincing them that I didn't, there is no guarantee going to a hot shot dermatologist is going to get you any better treatment. Sorry about that. I hope you have better luck and find a good one.

So yeah, my thought is, if you think you have it you probably do. If it goes away when you avoid gluten and iodine, then you know.

[cahill]

This is a link to photos of Dermatitis Herpetiformis

*just a word of caution* I would not open the link with children in the room

Open Original Shared Link

[cassP]

sounds EXACTLY like DH. i guess it's up to you how bad you want the diagnosis. i knew mine were DH.. they came 3 weeks after i quit gluten, and they took 4 months to go away. and yes, you're right-> not every dermatologist is gonna even know what they are. i wish i had taken a pic of mine.. for records. i did not need a biopsy to prove it- i know they were DH. i continued to itch them instead of putting ointment on them, so that my Gi could witness them- but soon after my visit with him, i put a "sovereign silver" ointment on them, and they went away, but my skin is still slightly discolored.

[eatmeat4good]

Cass? Could you repeat the silver ointment information and where you got it? Is it a prescription? I'm getting really tired of my DH...I wanna try it. Please and thank you!

[cassP]

Cass? Could you repeat the silver ointment information and where you got it? Is it a prescription? I'm getting really tired of my DH...I wanna try it. Please and thank you!

i just got mine at whole foods... i got the ionized silver (not colloidal) ointment, and it's called: "Sovereign Silver". i THOUGHT since people took Dapsone (antibiotic/antiinflammatory) that silver might do the same thing- it helped in my situation.

[vegan lisa]

Very interesting. Thanks everyone. I think I will take pictures next time I have some. I've been relatively clear for a few days now (also gluten and possibly iodine free).

I also think I could easily get my fancy researcher-GI doc to refer me to a dermatologist for DH testing. He thinks I likely have "non-celiac gluten intolerance" and is eager to rule out celiac. Also, then I wouldn't have the burden of convincing the doc to do the biopsy. BUT, I bet pictures would help me both with the GI doc and the derm.

No rush, I guess. I'll start taking photos and talk with my GI doc.

By the way, I had looked at those DH photos before, and they are definitely not for viewing with children (or anyone!) in the room. Beware before you click!

Lisa