And he needs to be super strict in his gluten free diet! SUPER strict, not just low gluten. No cross contamination, NONE.
I am so sorry, there are no short cuts with the testing. It flat out sucks but there you have it.
Welcome to the forum!
My understanding is the same, a full gluten challenge is needed for the DH diagnosis. The method the use for DH is to take a skin biopsy from next to a lesion, not on it. They check the biopsy for IgA antibodies.
I don't know of any way to shortcut the process and avoid eating gluten to get tested. There may be a test some day that doesn't require it, but for now I don't think there are any out there.
One thing he might not have tried is avoiding iodine. Some of the members with DH find iodine makes the rashes worse / longer lasting. He'd need to look up iodine containing foods and avoid them.
I suggest talking to the doctor and asking for a dapsone RX. He may as well try it since it might help Dapsone is a temporary treatment though and not a long term solution.
Welcome to the forum!
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!