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Can Dh Be Mistaken For Hives?
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I have been dealing with terrible hives along with other problems that have lead me to believe I may have celiac disease. I have seen a dermatologist, immunologist, GP and GI doctor. All say it is hives and have not done any biopsies of my skin. I have had an endoscopy and biopsy done and am currently waiting for the results.

I have been having them for about 6 months. They can appear almost anywhere and some days are much worse that others. They are usually bilateral (both legs, both arms, etc). They itch very badly and I have not been able to find an antihistamine that keeps them down. This includes prescriptions. They do not blister or ooze, but they do burn sometimes when I scratch them.

Does this sound like DH?

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I had DH for a couple of years before I was disagnosed with celiac and I've also had hives from food allergies. The main difference I found is that Benedryl brought the hives under control within about 20 minutes of taking the pills. Also, I found that when I got hives, I could feel them start in one part of my body and then travel to other parts of my body over a short period of time.

The DH symptoms improved when I took Benedryl, but they never completely went away. DH symptoms were always there, sometimes more severe than others. The DH rashes I had were generally symetrical - both shoulders, both elbows, both knees, etc. My dermatologist thought I had psoriasis and never did biopsies either. My GI doctor finally confirmed celiac after doing an endoscopy. The DH symptoms finally disappeared a couple of months after going gluten-free.

I hope you get a definitive answer when you get your endoscopy results.

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I have been dealing with terrible hives along with other problems that have lead me to believe I may have celiac disease. I have seen a dermatologist, immunologist, GP and GI doctor. All say it is hives and have not done any biopsies of my skin. I have had an endoscopy and biopsy done and am currently waiting for the results.

I have been having them for about 6 months. They can appear almost anywhere and some days are much worse that others. They are usually bilateral (both legs, both arms, etc). They itch very badly and I have not been able to find an antihistamine that keeps them down. This includes prescriptions. They do not blister or ooze, but they do burn sometimes when I scratch them.

Does this sound like DH?

I had hive-like skin reactions for years before the full dermatitis herpetiformis appeared. The hives would last for days, then for weeks, then for months, then they never went away. I had them in various places. On the face, forehead, chin, cheeks, legs, elbows. But never all at the same time. The skin reactions became more severe...though the area was not larger. More pain, swelling, brief blistering, more pain, like burns. As I look back now, I believe dermatitis herpetiformis starts as hives and progresses to full blown DH. I wish I had known that. Also, it doesn't always look like the pictures on the internet. It can take various forms, from one small painfull lesion to whole areas that are inflamed. The only remedy for me was going gluten free. That came after years of seeing dermatologists who said it was "adult acne" and dozens of antibiotics, and skin cultures, and steroids etc. 7 years later I am left with awful scars, and the sores I had in the beginning were very superficial but burned when scratched. Try going gluten free because it may be your anser. But please remember the antibodies remain in the skin for a long time...so it can take 6 months or more to heal even if you remove gluten from your diet. You are right to be concerned at this point. If it is gluten you won't have to buy all the prescriptions or see all the Dr.'s who really aren't familiar with it. If you can get a biopsy done that would be definitive...if they biopsy next to the lesion...even if it just looks like hives. Advocate for yourself, but if they won't do it, you can try gluten free anyway and see if it helps. Good luck

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Thanks for the help guys. I will wait for the endoscopy biopsy results before I push for a skin biopsy. Hopefully will get them in a couple of days. These hives have been driving me crazy for 6 months! :o And taking several prescription antihistamines is pretty expensive too.

I was concerned becuase most descriptions of DH are that it is painful. My hives have never been painful, but they are intensely itchy. If I scratch too much, they can feel kind of like a mild sunburn, but they have never had blisters. I didn't know that DH started out milder, then became more intense.

I tried the iodine patch test at home. Got some 2% iodine at the drug store and soaked a piece of gauze in it. I taped it over with a bandage and left it on about an hour before it started burning like heck. I haven't seen any blisters or sores around it, but it still burns the next day. I read you were supposed to do it for 48 hours, but it really hurt! Not sure what to think of this reaction? It's hard to tell if it's red because my skin is stained.

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My hives or whatever they are, can be just about anywhere (face, neck, trunk, legs, arms, feet, scalp). They never completely go away, but just move around. They usually are symmetrical (both arms, both legs.) I also occasionaly get some swelling under my eyes and in my lips along with mouth and tongue ulcers. The iodine patch test that I did at home created a burning lesion that eventually peeled off. The skin underneath it is a bit red and shiny.

I have contacted my immunologist/allergist and am trying to see if he will do a skin biopsy. My endoscopy and blood tests came back negative. I also had some D and gas, which has improved after being gluten free a little over a week.

Benadryl does not help with the swelling or the hives. I am taking allegra, hydroxyzine and zantac and still have hives.

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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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