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    Dermatitis Herpetiformis: Diagnosing and Treating the "Gluten Rash"

    Miranda Jade
    Dermatitis Herpetiformis: Diagnosing and Treating the
    Caption: Photo: CC - Anosmia

    Celiac.com 04/25/2012 - In my experience growing up with undiagnosed celiac disease, I had to deal with several symptoms that my doctors had no answers for. One of the most frustrating of these was my skin troubles—dermatitis herpetiformis. After my experiences with misdiagnoses, and finally more recently, learning how to effectively get rid of dermatitis herpetiformis, I encourage parents to be particularly watchful for signs of dermatitis herpetiformis in their children, and I have some useful advice for those—children and adults—who have already been diagnosed with this annoying and sometimes quite troublesome rash. Since dermatitis herpetiformis occurs in 15 to 20% of celiacs, it’s worth any celiac’s time to learn more about this condition.

    Photo: CC - AnosmiaBy definition, dermatitis herpetiformis is a blistering and extremely itchy skin rash. It’s usually symmetrical in shape and is most commonly located on the elbows, knees, buttocks, and upper back. It’s common for people with dermatitis herpetiformis to have rashes appear in the same spot, and they can either be consistent or come and go. People can experience the rash on other parts of the body, and severity of symptoms can vary. Dermatitis herpetiformis is sometimes called the “gluten rash” or “celiac disease rash” because it occurs in people with a gluten intolerance or celiac disease. It is commonly misdiagnosed as eczema.

    Gluten is a protein found in wheat, barley, and rye. In people who have celiac disease, gluten causes an autoimmune response which results in the immune system attacking the lining of the small intestine—specifically the villi, the absorptive hair-like structures of the lining. With dermatitis herpetiformis, outbreaks are also triggered by gluten.

    Interestingly, unlike celiac disease which appears more in women than men, dermatitis herpetiformis is more commonly found in men by a ratio of about two-to-one. It is rarely seen in children under ten and first appears in the teenage years or even in one’s twenties or thirties. It may come and go, even if you’re eating a gluten-containing diet.

    Diagnosis is done with a skin biopsy. In most cases, a dermatitis herpetiformis diagnosis means celiac disease as well, even if you’re not obviously suffering from the characteristic intestinal symptoms of this disease. No matter what, the treatment is the same: a strict gluten-free diet.

    Dermatitis herpetiformis rashes are treated in two main ways--the gluten-free diet, of course, and antibiotics such as dapsone or sulfapyridine for those who aren’t able to tolerate dapsone. A truly gluten-free diet can eliminate dermatitis herpetiformis, but in my experience and according to the National Institutes of Health, a dermatitis herpetiformis rash responds dramatically to dapsone, within 48 to 72 hours. To treat the underlying cause of dermatitis herpetiformis, which is celiac disease, a strict gluten-free diet must be followed, but according to the National Institutes of Health, “Even with a gluten-free diet, dapsone or sulfapyridine therapy may need to be continued for 1–2 years to prevent further dermatitis herpetiformis outbreaks.”

    As a celiac with dermatitis herpetiformis, completely eliminating gluten from my diet has been the only lasting solution for dermatitis herpetiformis, but unfortunately I can accidentally ingest gluten from time to time, especially when I travel. In my most recent outbreak, I decided to get a prescription for dapsone. Although dapsone is a very strong drug with side effects and should be used sparingly, I was in need of something fast-acting. I followed the instructions exactly, and not only did it relieve the pain but within three days, I could see a remarkable change in the appearance of the dermatitis herpetiformis. After reexperiencing the painful and frustrating symptoms of dermatitis herpetiformis and the relief that came with proper treatment, I knew I had to address this topic to help others. I encourage everyone to get the word out about dermatitis herpetiformis so more and more people dealing with this misdiagnosed condition can get help just as I did.

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    I've been struggling with a rash for about 15 years. Saw several dermatologists and docs and was told it was an allergic reaction, shingles etc. Two years plus ago my oldest daughter was diagnosed with celiac. Trying to educate myself I finally found the answer to my rash!! During that time it would come and go to varying degrees. So, gluten-free I went. Then after a couple of month I had some gluten and then some more only to find myself covered in the rash from head to toe!! Burning and itching to the highest degree!!! I couldn't sleep, still can't. I went gluten-free once again and have followed it with the occasional glutening. Then I begin all over...I'm so tired. I'm 61 and now diagnosed with diabetes type 1 and Hypothyroidism. Started meds a month ago for both and 3 weeks in I began to break out like crazy!! So, figuring it was the diabetes meds I stopped taking them. The inflammation has subsided some, waiting on my dr to call. Now I'm wondering if it could be the iodine in my Synthroid! I've heard that Dapsone works well and I'm willing to try it, but first I need to be officially diagnosed with has come back negative since I was gluten-free for 6 months waiting for the appointment!

    FYI...Snythroid has Gluten in it! I have had this rash since August. This is the first information that I have read that makes sense. No doctor has had any answers for me. I have been gluten free for the last 2 years but I must be getting glutened somewhere. I also have corn, egg and most gluten-free grain allergies. I also believe stress activates it.

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    Hi, I just found I have DH 3 days ago, I've been having skin problems for almost year and a half. My first dermatologist told me it was ring worm, second one that it was impetigo. Third dermatologist took a couple of skin samples and the biopsy shown it was DH. I have some GI problems and I'm going on gluten free diet, but I've been reading a lot about cross reactive foods to gluten and it worries me a bit. Do you find this food harmful or do you just skip wheat, rye and barley?

    You have to avoid all of them and anything that may be made with them. Even a small amount causes a reaction in me. It is the only way I know I was glutened, since I do not have GI issues with my celiac.

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    Guest Colleen

    Posted

    I'm with you Liz. I am in despair myself. I have had it for 2 years. Completely undiagnosed. I went to 5 dermatologists, most of which insulted me. I have been called crazy with no self control. Everything, been told eczema, folliculitis, etc....I finally found someone who knew what it was but was not under my insurance and he got all "ethical" whatever THAT is and said he couldn't test me. So back to insulting dumb guy I was forced to go. I gave up. I tried again. He wouldn't test me correctly, he didn't know how. I was in despair. I had stayed on gluten for THEM the ones who dare not help me. I finally went gluten-free 2 months ago after back and forthing all of last year...emotional and painful roller coaster. I am STILL blistering in my scalp really bad and my back...I have a constant oooze on my skin...I know when they are forming...I know where they'll be....but I don't know what I am doing wrong. Things have gluten that even say they are gluten-free I guess. I can't sleep because I can't lie on either side of my head OR my back...I close my eyes for 3 hours every night in a crossed legged position sitting up...I don't hardly eat anymore because I can't take the blisters. I really feel , this is it, there is no help for me. Do i quit my job? what do i do. i cant go out in public anymore. I cant wear clothes. I cant get medicine. I cant do anything. They don't care. I am destroying my liver with Benadryl, Motrin and Excedrin and anything I can get..

     

    I get ya liz.

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    Guest Naomi

    Posted

    I have used Dapsone Cream with great success rather than taking oral Dapsone. Really worth the time to have the cream made up at a special pharmacy.

    I had a terrible reaction to oral Dapsone. Did you? Is that why you took topical dapsone? 4 Months gluten-free and I am still suffering terribly from DH.

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    Definitely good to read info from other sufferers. It's a little known or spoken about condition but has huge consequences on quality of life.

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    Guest Jennifer M.

    Posted

    I'm a female diagnosed at age 44. I suffered for more than 40 years. My earliest memory is scratching the rash in the back of my neck. I remember as a child scratching the back of my legs behind my knees. As a teen, the posterior neck and above the hairline was terrible. The sores from scratching were weeping and I lost some hair. I got itching bumps on my knees and elbows too. All my childhood memories involve itching! My daughter's rash came when she was four. I thought it was chicken pox. The Dr said it was a staff infection. Later the Dr said eczema. After months of research, I asked the Dr to do a Celiac panel. It was positive. My son also tested positive but he does not have DH. Curious thing, she also used to complain of leg cramps as I did as a child. Not sure if that is related to DH though. The article said DH is rare in females and children but, not rare enough for my family. We have been 2 years gluten-free and my daughter has no more skin problems. I forgot I had arthritis and peripheral neuropathy as I am so much better(cured?) I do have some trace itch and the skin on the back of my neck will never be the same after 40 years of inflammation and scratching.

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    Guest Lydia976

    Posted

    I'm with you Liz. I am in despair myself. I have had it for 2 years. Completely undiagnosed. I went to 5 dermatologists, most of which insulted me. I have been called crazy with no self control. Everything, been told eczema, folliculitis, etc....I finally found someone who knew what it was but was not under my insurance and he got all "ethical" whatever THAT is and said he couldn't test me. So back to insulting dumb guy I was forced to go. I gave up. I tried again. He wouldn't test me correctly, he didn't know how. I was in despair. I had stayed on gluten for THEM the ones who dare not help me. I finally went gluten-free 2 months ago after back and forthing all of last year...emotional and painful roller coaster. I am STILL blistering in my scalp really bad and my back...I have a constant oooze on my skin...I know when they are forming...I know where they'll be....but I don't know what I am doing wrong. Things have gluten that even say they are gluten-free I guess. I can't sleep because I can't lie on either side of my head OR my back...I close my eyes for 3 hours every night in a crossed legged position sitting up...I don't hardly eat anymore because I can't take the blisters. I really feel , this is it, there is no help for me. Do i quit my job? what do i do. i cant go out in public anymore. I cant wear clothes. I cant get medicine. I cant do anything. They don't care. I am destroying my liver with Benadryl, Motrin and Excedrin and anything I can get..

     

    I get ya liz.

    Liz, you have to stop taking NSAIDs! They can exacerbate your symptoms, if not bring on gluten related neuropathy altogether. Try circuit extract capsules as a substitute.

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    I too have a big rash on my leg and have tried everything under the sun to get rid of it, even bleach. My doctor said it was only a skin rash but whenever it comes it itches so bad when I have jeans on because my legs get hot and there it goes--I'm scratching again.

    Someone said to stop eating sheep/lamb. I no longer have that crawling feeling and no sting like an invisible bug has bitten. What do you think?

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    Do you have to eat gluten to have a skin biopsy? I get the rash from time to time. I've been gluten free for several years. I have just had genetic testing and I have several genes linking to celiac and this. I don't really want to eat gluten just to confirm.

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  • About Me

    Miranda Jade became extremely involved in celiac disease, gluten sensitivity and gluten issues a number of years ago after many years of misdiagnosing. Since this time, she has engaged in diligent research and writing about these topics, developing gluten-free recipes, and reviewing companies for the celiac consumer’s safety on her award-winning website: GlutenFreeHelp.info. Being a first time mother, Miranda is diligently working hard to help all families increase their awareness, the signs, diet changes and testing options regarding gluten issues. She believes raising a healthy happy gluten-free family doesn’t have to be difficult.

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