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About TDZ

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  1. Thanks for all that! No luck from PCP anyway -- just a referral to GI to go along with the referral to dermatology, and we're not sure about going to either one if it's just going to require months more of gluten. He's already at the end of his rope with two years of itching all over, so it's a bit much to ask. Presumably endoscopy would show intestinal damage, though, without adding more gluten, since it should take a lot longer to heal? He definitely has intestinal issues along with the DH -- he's had far more years of bloating, discomfort, diarrhea, constipation, the works. So the GI might still be of use. And a good idea, even if the Dapsone turned out not to be, just for finding out the extent of the damage and if anything else is needed.
  2. Not a clue, other than normal eating. He ate a fair amount of bread, and pasta and pizza and such. Right before the massive outbreak in November, there was a peppermint/chocolate-drizzled popcorn that I got at Walmart, and it gave both of us horrible diarrhea, and within a few days he was covered with more rash than ever before. Might have been unrelated, but it's the only unusual thing that times out right for any causality. Otherwise, he wasn't eating anything different. The first thing that I suspect started it was weedeating the yard a couple of years ago -- I'm seeing that wheat allergies correlate with grass allergies, because wheat is a grass and is related to lots of things. That one particular day, he started getting the rash and thought he must be allergic to a particular plant that we had noticed and hadn't ever had before, and it really never completely went away after that -- ebb and flow, but no remission, and then gradually getting worse and worse and spreading to other areas. So maybe that was the initial sensitization, and then the gluten continued it. Just a guess, though.
  3. Yeah, I think the only reason to bother with trying to get a diagnosis is if it's needed in order to get the Dapsone, which would be a lifesaver for him in stopping or helping the itching while he gets his diet more in order. He's had continuous rash and lesions and blisters over large to larger parts of his body for a couple of years, and the itching is driving him insane. We do have an appointment with his PCP this afternoon, to try and talk him into trying the Dapsone -- seems it would tell the tale within a matter of days, so it couldn't hurt much to try, and it would hopefully be a godsend.
  4. I was just reading some of the biopsy threads, and I wonder -- he has lesions, all over, and has had for a couple of years to varying degrees, so even if the celiac blood test was negative due to his recent gluten-free diet, would they still be able to find it in the biopsy? Because there are lesions to biopsy next to -- those haven't stopped. Maybe he wouldn't have to go back to gluten to get the biopsy?
  5. Little late here, but my husband has chills all the time with his. He's been frying us all winter, cranking up the heat! It doesn't help that he can't wear a shirt because it irritates the rash.
  6. Hello, new here and new to the whole thing! My husband has been battling this rash and assorted digestive issues for years. He was diagnosed with contact dermatitis by the dermatologist, had some steroid injections and various creams over the last couple of years, and then in November he went to the ER and they said eczema and gave him steroid pills. This was after a huge bloom that pretty much hit him from head to toe, where it had been mostly arms and legs before. He finally concluded he was having problems with gluten and dairy, and made an effort to drop those from his diet. It wasn't perfect, but we got him mostly gluten-free and dairy-free. Then he finally went in to the doctor for a food allergy test. Celiac came back negative (although a pretty high negative, over a hundred points higher than my own and I'm not allergic to anything), and the food allergy panel came back with everything lit up except the fish -- and "highly allergic" on wheat and cow's milk, along with a high "moderate" on shellfish. All the nuts, all the proteins, everything. However, when I started looking at the celiac test yesterday, I realized it says a gluten-free or low-gluten diet will normalize it -- and he'd been mostly gluten-free for at least a couple of months. So I started digging, and suddenly came up with this DH thing. I cannot imagine why we've never run across it before, because we've googled everything to do with rashes that anyone could imagine, over the last year or so. But lo and behold, there it is -- everything about it is exactly what he has. You all sound just like him, with the cold water and the ice packs and every other thing that everybody is doing to try and stop the itching. Now the problem is how to get the diagnosis -- I'm assuming it takes a diagnosis to get the Dapsone prescribed, and he would apparently have to go back on gluten for two or three months to get the skin biopsy test to come up positive, which he REALLY doesn't want to do, because it has been getting better with this experimenting. Still a lot of infuriating bits that aren't going away and keep flaring up, but he doesn't want to blow up again and have to start over. I work in the doctor's office, and I did put a note through to the doctor to ask him to look into it, but that's always risky because doctors don't like when patients say, "Hey, I did your job for you, here's what we want." But there's a chance he might be willing to try the Dapsone, and it appears that we'd know pretty quickly if it was working. Anyway, I'm looking forward to mining this place for tips and advice in figuring out where we go from here and how to accomplish it. Sorry you're all suffering from this hideous thing, but thanks for being here!
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