. ([info]uglyvalentine) wrote in [info]celiac,
2005-07-18 12:54:00
Hi everyone, I was wondering if there are any celiac sufferers who have DH (dermatitis herpetiformis) here. The rash I have looks like what is on the link but I'm not one to make internet self-diagnosis.

I finally get to go in this Wednesday and ask my doctor if it is DH or if it is eczema. The rash I have is severely different from eczema in that the blisters look like volcanos and are really itchy, symmetric on my elbows and knees and a few spots on my belly. This just recently happened in October and I really don't know what to expect from my doctor visit. I went to 2 different doctors out of my normal heathcare network and they took a look at me an said to stick to a wheat-free diet. I've been mostly good about eating wheat-free but haven't adhered completely in that I haven't had a biopsy or any real treatment (out of network doctors are expensive). Does dapsone work fast or does it take a bit to kick in? I'm kind of scared for my visit in that I don't know if I will have to be wheat-free forever or not.

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  • 10 comments

[info]sarff_nodwydd

July 18 2005, 13:09:38 UTC 6 years ago

Dapsone can take up to 6 months to kick in. During the interim, the ONLY solution is to stay completely gluten free.

They itch. They itch a lot.

[info]tree_woman

July 18 2005, 13:11:58 UTC 6 years ago

I do, I do!! In fact, until I was diagnosed as celiac a month or so ago, I never understood the "mystery rashes" that I started getting at 10 years old. I thought they were from stress, but now I understand them as DH.

If you are diagnosed with DH and you need to follow a gluten-free diet, don't despair or be afraid. It's tricky at first, but once you get the hang of it there's lots of ways to get your desserts, your breads, and your sauces without gluten. And [info]celiac is a fantastic resource. :)

[info]uglyvalentine

July 18 2005, 13:15:45 UTC 6 years ago

what did they do to you when you were at the doctor? did they do a biopsy of the skin? did you get on any medications at all?

i've been mostly wheat-free but since i haven't had an official diagnosis yet, ive been off and on with the wheat and the rash still persists. its so itchy!

[info]tree_woman

July 18 2005, 13:18:28 UTC 6 years ago

My biopsy was on my small intestine, not my skin, which was taken via an endoscopy (a probe down my esophagus). They also did a blood test on me to measure my level of anti-gluten antibodies.

Remember if you have DH you need to cut out more than just wheat. Anything with gluten in it will worsen your symptoms. :(

[info]tree_woman

July 18 2005, 13:18:44 UTC 6 years ago

And omigod, it's soooo itchy!

[info]uglyvalentine

July 18 2005, 13:31:06 UTC 6 years ago

it is soo itchy! my rash is so weird because it doesn't look like the normal eczema i have on the back of my knees and i've never had lumpy rashes on my elbows or knees before!

[info]ex_carnivale800

July 18 2005, 14:39:35 UTC 6 years ago

I used to have DH really badly before I went g-f. It seemed to get worse as my celiac disease got worse. When I was a kid I used to just get it on my butt, like little pimples and I could never understand why I always had a pimply ass (TMI, I know, but....) as my celiac got worse, and then turned on full-blast, the DH rashes would break out behind my knees (backs of my legs) and elbows (the inside). Damn it hurt, and damn it was itchy, and damn it hurt when I scratched it, which I couldn't not scratch it. AS soon as I went g-f, it was the first of my many symptoms to clear up. I'd try seeing if you can get a clear diagnosis of maybe having Celiac before you go g-f, because it's really hard to get once you do. That said, you may just have a wheat allergy, which in itself isn't fun, because you have to g-f in that case too. I hope whatever it is you have goes away!

[info]uglyvalentine

July 18 2005, 22:01:03 UTC 6 years ago

yeah, i'm hoping the appointment on wednesday will be able to gve me a diagnosis before i commit to being gf for life. i just had some bread yesterday and im so itchy and miserable right now! i don't know how you and everyone else seem to deal with this with such grace while i'm freaking out and so scared about this. i don't think there is anything itchier and painful than DH.

[info]ex_carnivale800

July 19 2005, 02:32:08 UTC 6 years ago

Being really really sick for way too long, and then suddenly finding a cure for that sickness (in this case, going fluten-free) gave me all the grace I needed to cope with it all. Plus I feel 100% better.
I'm sorry you're still so itchy.

[info]petitedelete

July 19 2005, 17:47:54 UTC 6 years ago

Ive been gluten-free for a few years now and I still get it. Argh.
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