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Good Information On Dh

Hopeful1950

By Hopeful1950
in Dermatitis Herpetiformis

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Hopeful1950 Explorer
Hopeful1950
Posted

I am providing a link to an article that talks about the fact that the antibodies can remain in the skin for up to 10 years and also the fact that it is thought that trauma to the skin can exacerbate the symptoms. There are also some very good images here.

I have parked it on the treatment section, but if you click on the "Overview" section you can read all about it. Quite technical, but informative.

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drgoogle Newbie
drgoogle
Posted

I am providing a link to an article that talks about the fact that the antibodies can remain in the skin for up to 10 years and also the fact that it is thought that trauma to the skin can exacerbate the symptoms. There are also some very good images here.

I have parked it on the treatment section, but if you click on the "Overview" section you can read all about it. Quite technical, but informative.

Open Original Shared Link

I also really like that article for an overview - it's also what had me look at my birth control pill as a potential aggravation of my symptoms. I also like this one to help explain some of the finer details in somewhat layperson terms: Open Original Shared Link

Given how readily available all of this information is, from both reliable layperson sites as well as in the peer-reviewed medical literature, I am so very flabbergasted that out of 8 docs including 2 specialists I saw, no one once considered DH, and when my family doc finally thought perhaps DH because of the gluten-link, she biopsied a lesion and not some normal skin + a couple lesions. Really hoping the lesion or maybe if she got some surrounding skin will shed some light on whatever this is. Also, I had to really try to convince her to give me a biopsy and she only did so when I went back to switch birth control since I thought it aggravated my symptoms. She was hesitant because I'd been gluten-free for 2 weeks the first time I asked about a biopsy. Given the IgA deposits can stick around for years, should that really have stopped her?

Going back to my dermatologist tonight for my regular light therapy and hoping he'll take a look at my minor wounds that have bubbled up like crazy, and some of my newer lesions that I've gotten over the holidays due to possible cross-contamination (hard to explain to restaurants/family how careful I'm trying to be). He's still convinced it's eczema. I'm not. Perhaps when this first started it looked like a multitude of other skin reactions/disorders, but now that things have calmed down and I'm exposed to gluten only when accidental, the lesions act and look uncannily like everything I've read on DH and I only seem to get worse now when I've eaten something outside my control.

Also trying to get back in with the allergist/immunologist who said "this has nothing to do with food" when he saw me and diagnosed it as an acute allergic reaction even though it had been going on for almost 3 months and I finally saw relief when I started avoiding gluten and dairy. A couple more months later ... I wonder what he'll think now!

Hopeful1950 Explorer
Hopeful1950
Posted
  • Author

Yep, I have been to dermatologists, psychiatrists (at the recommendation of the derms) and finally an allergy doc because I just knew that something I was ingesting was causing this. He tested me for all kinds of allergies and found nothing. Unfortunately he is not a derm so couldn't do a skin biopsy. One of the derms (who had diagnosed a friend of mine with DH) did do a biopsy, but never even considered DH. Told me I was a "picker" and gave me Seroquel. He didn't even listen to my descriptions of little watery blisters and the intense itching that I would give up and scratch just to get some sleep along with the symmetry, the purple scars, the duration of the rash, etc. The allergy doc agreed to let me try Dapsone. Hello...after two days the itching was almost gone and after a month I was almost healed. The allergist consulted with a derm friend of his from somewhere out of state and all are in agreement that I have DH. Unfortunately I became very anemic on Dapsone and had to discontinue and now the rash has gone crazy.

Sometimes I think we on this forum know more than the docs! I have pored over all the posts and followed the links and brought all the medical research to the allergist and he has been really receptive to the information. He also stated that he is seeing a lot of people presenting with similar rashes and is looking in the direction of DH. I guess one doc educated is better than none!

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