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So Is This Dh?
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9 posts in this topic

My wife has been telling me for a couple years now, that she suspects I have celiac disease. Now I have developed a really aggravating rash, it's very itchy, and even though I haven't been scratching it, it's raw. My question is, does anyone think this is DH?? http://s657.beta.pho...html?sort=3&o=0

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Yes, I think it's QUITE possible that you have DH. Have you considered going on a gluten-free diet? If so, please eliminate iodine for a while, too, since it exacerbates DH. (P.S. Give your wife a kiss! She's a smart lady!)

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Yes, I think it's QUITE possible that you have DH. Have you considered going on a gluten-free diet? If so, please eliminate iodine for a while, too, since it exacerbates DH. (P.S. Give your wife a kiss! She's a smart lady!)

Ditto!

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Well, it's sure in the right spot for DH. Do you have it anywhere else? It looks similar to my rash. I'd say the only way to know for sure is to have it biopsied but unfortunately that isn't always accurate.

Jane

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Well, it's sure in the right spot for DH. Do you have it anywhere else? It looks similar to my rash. I'd say the only way to know for sure is to have it biopsied but unfortunately that isn't always accurate.

Jane

Thanks for the replies. I currently have it also on my inner thighs on both legs midway down to my knee, and it's starting in my underarm area as well. I went to the Doc today and he's sending me to allergist. So we'll see what's going on hopefully. He did prescribe a steroid dose pack, but I'm not sure if that'll help.

Edited by bigkane
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If they end up doing a biopsy, INSIST that they biopsy the clear skin NEXT to the lesions. If they biopsy the lesions themselves for DH, they will come up as false-negatives. Very few dermatologist know how to correctly biopsy for DH. Good luck there!

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Thanks for the replies. I currently have it also on my inner thighs on both legs midway down to my knee, and it's starting in my underarm area as well. I went to the Doc today and he's sending me to allergist. So we'll see what's going on hopefully. He did prescribe a steroid dose pack, but I'm not sure if that'll help.

Someone correct me if I am wrong, but I believe should it come to you having a biopsy the steroids will affect those resuls (false negative). Just something to keep in mind.

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I think you're right--steroids might skew the biopsy results. The poster should have been referred to dermatologist and not an allergist.

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Steroids, topical or oral will make a biopsy of the rash, or a celiac blood panel or an endoscopic biopsy NEGATIVE. No steroids should be used for 2 months prior to any testing.

Yes, the op should have been referred to a dermatologist.

And to top things off; generally celiacs with dh test neg. on the blood panel & endoscopic biopsy.

AND for the skin biopsy you MUST be actively consuming gluten or else you get a false negative.

Some links:

Interesting Reading on DH:

Descriptions of DH Types:

Help for the Itching, Stinging, Burning, Pain of DH:

DH Photobank:

Newbie 101 for celiacs

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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