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Diagnosed With Dermatitis Herpetiformis

MDW1

By MDW1
in Dermatitis Herpetiformis

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MDW1 Newbie
MDW1
Posted

I was diagnosed with Dematitis Herpetiformis last January and my doctor prescribed Dapsone plus a gluten free diet. This past August I had to stop taking the Dapsone because it was causing a problem with my red blood count. So.......

now more then ever I had to be gluten free. Even though I am gluten free (at least I think I am) I am still getting the itchy bumps on my elbows and knees. When it gets real bad, I take a dose of Dapone (I have a few tablets left on my original prescription) and it stops but then I do not take anymore Dapsone but three days later the bumps start up again. Can anyone please tell me when the itchy bumps will stop developing? When they develop is it from some gluten I ate the day before or is it from something I ate a month ago and it just takes time to get the old gluten out of my body? Any help would be very very appreciated!!!

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Franceen Explorer
Franceen
Posted

All of what you say is true! It can takes months to rid the Gluten from you system enough to completely clear up DH. AND, it takes a LOT of diligence to be completely gluten Free. I thought I was for months, turned out I wasn't. Once I really became obsessive about being truly Gluten Free instead of Gluten "Lite" I had noticeable improvement in the DH, but it took 3 months for it to totally disappear. I now find that I react right away (and now I'm getting intestinal symptoms too within hours). The DH takes about 2 - 3 days to appear and much longer to clear once I've been glutened (a month or more).

I, too, took Dapsone - and almost died from it - I got the anemia and then it affected my liver. Once I stopped it, I HAD to be VERY Gluten Free because I had DH all over my whole body at that point. I haven't taken Dapsone for about 20 months now and am not tempted to take even one. But I DO get Prednisone from my Dr. if I have a very bad breakout from accidental glutening (POINT: it's NEVER purposeful glutening!).

DH is tough because it can be a delayed reaction and take so long to clear. Just keep pursuing more and better Gluten Free Eating! (Restaurants are my worst enemy, but I have to eat out for work and I love to eat out with my husband!)

dhd2000 Newbie
dhd2000
Posted

I was diagnosed in May, but never took Dapsone because of drug allergies. For a few months I had to be very careful and found that other things could also trigger the outbreaks, like advil, iodized salt and maltodextrin. Without those things, I am finally clear, but now sometimes get GI symptoms with some of the premade gluten-free products. If I stick with a very basic diet (meat/fish, fruit, veggies, nuts, rice and potatoes) and limit my gluten-free products, I am fine. And I also found that things like the maltodextrin and iodized salt would cause spots quickly, within a couple of hours, but wheat and advil caused delayed reactions, like a day or two.

Good luck!

Denise

Forgot to ask if you already use gluten-free shampoo and soap, ect.

JoeB Apprentice
JoeB
Posted

After about 3 months being gluten-free, the outbreaks lessened, but every once in a while, I'd get an outbreak on my elbows, knees or shoulders. I never used Dapsone because I found I manage the problem by using aloe and an occassional benedryl to keep the itching bearable. It took me about 18 months after being diagnosed for all the DH symptoms to completely disappear. I haven't had any problems since (I'm about 30 months gluten-free now).

You just have to stick to the gluten-free diet religiously and eventually the itching will disappear. Hang in there.

Rusla Enthusiast
Rusla
Posted

When you are gluten-free you need to be totally gluten free, that means, soaps, shampoos, lotions, food. You must read every label all the time and if you aren't sure don't touch it. I also call all the companies if their phone number is on the bottles. Now, I have DH and being careful of shampoos etc. because it affects the DH also if you have lotion on your hands and it is not Gluten free then when you pick up something to eat, you injest it. I always get glutened at work no matter how careful I am at cleaning things off and wearing gloves to do it. All it takes is a few crumbs for me.

MDW1 Newbie
MDW1
Posted
  • Author

What is the ingredient in the soaps and shampoos that causes a problem? Some of the chemical names are so hard

to determine. I use to use Ban deodorant but I checked and it has a barley extract in it so I discontinued using it. My

diet pretty much consists of boiled/grilled chicken, grilled hamburger, hard boiled eggs, grapes, strawberries, potatoes, frozen corn, frozen peas, rice (gluten free), macaroni(gluten free) & cheese, gatoraid, 7-UP, white zinfandel wine, and milk. I am tempted to eliminate the dairy as I am hearing this may be a problem also. Not sure....So hard.....I think I am eating gluten free but I still break out with these itchy bumps....Not sure if it something I ate yesterday or something I ate 6 months ago. This really stinks!

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