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This is true for me too, in fact I only get the reaction in the genital area and no where else (which seems unusual to me?) I've been dealing with this for four years. If I get "glutenated" I get very painful rashes/inflamed skin on my butt (directly on and around the sphincter usually) which has resulted in many very painful fissures. The itching is enough to drive someone mad in the worst moments. More recently I've started seeing the rash appear on my penis, which is really pretty terrifying. With each year the outbreaks seem to be spreading on my body. I've been leading a very strict gluten-free diet for over a year, which really helps stop outbreaks, but I inevitably get some sort of cross-contamination every month or two and have to deal with a new flare up. I'm realizing I must be extremely sensitive. My dermatologist prescribed the steroid cream Cloderm, and this helps reduce the rashes within a few days. I hate to use this cream on such sensitive areas of my body since it runs the risk of permanently thinning my skin, but so far I have found nothing else helps and during an outbreak out I get desperate. I'm thinking about trying Dapsone as soon as I have health insurance again. I wonder if others have found Dapsone helpful?
Sorry if that was TMI but I feel like people really need to talk about the embarrassing reactions so that we know we aren't alone in this.
Thanks for all of these posts, it's been really helpful to read. I've been struggling with DH since 2008 and I've been strictly gluten-free for a year or more. But no matter how hard I try, I still seems to get some contamination every month of so and my body breaks out in a new round of really painful and itching rashes (all centrally located where the sun does not usually shine). It's incredibly frustrating to live so rigidly and yet still get these breakouts, which can sometimes take months to finally go back into remission. My dermatologist recommended that I try taking Dapsone in order to avoid the pain of those inevitable moments of cross-contamination. He said that I would need to get bloodwork done every week for the first month in order to make sure I'm not have a bad reaction. My greatest weapon thus far has been the topical steroid cream Cloderm. My dermatologist prescribed it and within three days (applying a thin coat twice daily) all of the itching ceases. It's literally kept me from going insane. Though I get nervous using it because steroid creams can lead to an eventual and permanent thinning of the skin but my Dermatologist says using it only a few days a month won't cause any damage. I'm currently debating the Dapsone. I know that I will still need to live a strictly gluten-free diet, but if I could end these occasional outbreaks it would be worth the risks.