Help!

[Gluten=bad]

Hi all, I was diagnosed last month with Celiac disease. At the time I went to the doctor for a physical and she noticed a rash on my upper back (both sides). It was itchy some and seemed to get worse after bathing and then toweling off. I started a gluten-free diet and will admit that I cheated three days out of last week. However, as of last Saturday night I have not had one single thing containing gluten unless of course there has been cross-contamination. I try to be very careful and after cheating and getting the GI upset, fatigue, and rash that spread to my shoulders; I had had enough. I have noticed this week though that the rash has started flaring up again with itchiness mostly noted at night. What am I doing wrong? My doctor advised me to get some OTC itch cream as she didn't want to prescribe the strong meds that combat DH I'm guessing. I haven't had a biopsy done of one of the skin lesions, but had positive blood work (gene) for Celiac disease. What can I do and how long does this normally take to go away?

[Ursa Major]

The smallest amount of gluten can make DH flare up, and it could take a while before it calms down again.

It can take up to two years for the gliadin deposits under the skin to be gone, and until then you you can have flare ups for no obvious reasons (even though those are usually milder). But if you cheat, you are in for it!

I hope you are really convinced now to be gluten-free, because the itch from DH can literally drive you insane (I read that during the last century, before the cause was known and there was nothing that would help, some people with DH REALLY went crazy, and quite a few committed suicide).

I hope the rash clears up soon, and you feel better. And no more gluten!

[itchygirl]

I hope you are really convinced now to be gluten-free, because the itch from DH can literally drive you insane (I read that during the last century, before the cause was known and there was nothing that would help, some people with DH REALLY went crazy, and quite a few committed suicide).

That is absolutely true. In Samter's Immunologic Diseases it says that "before the discovery of Dapsone as an effective therapy for this disease the most common cause of mortality in dermatitis herpetiformis was suicide prompted by intractable puritis and complicated by skeptical physician reaction..."

[Ursa Major]

Of course, Dapsone is not REALLY a valid treatment, because it only treats symptoms, not the cause. It is helpful to some people to get some relief until the gluten-free diet will control the DH. But the only real treatment is the gluten-free diet.

[KimmyJ]

I would add that if you can avoid Dapsone at all costs, do so. I was never on it, but literally within a week of going gluten-free, my DH was almost completely gone! It felt like a miracle to me because it was absolutely unbearable before! As others have posted, getting any gluten can (and probably will!) cause a flare-up that will quickly convince you that cheating is not a good plan. Anyhow, the possible side-effects and complications associated with Dapsone are just not worth it in my opinion. Especially since, as PP said, it only treats symptoms. I hope you feel better soon! It really is miserable getting it sorted out.

[itchygirl]

I was on Dapsone and it made me think I was walking sideways all the time. Plus I felt like I had the flu. A really bad flu. But the walking sideways thing was really annoying. It felt like I'd just gotten off a tilt-a-whirl or other circus ride.

[flourgirl]

I agree that the Dapsone may be worse than suffering through the itches! I had DH all over, and had it for many weeks before it subsided. As hard as it was not to scratch while awake, I was scratching in my sleep. I was using bath soaks, anything that soothed, and there is a clear calamine lotion that helped at least somewhat. It didn't draw as much attention as the pink stuff, since I had it on my neck and face, as well as chest, belly, arms legs....you know, everywhere. The good news is that it will go away eventually IF you stick to the gluten-free diet. Now I find that I'm really sensitive, I break out in blisters with iodized salt, or with ibuprofen. But at least the blisters are few, and the patches are small. Good luck, heal quickly!

[Gluten=bad]

Thanks guys, it's slowly getting better.