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  • Miranda Jade
    Miranda Jade

    Dermatitis Herpetiformis: Diagnosing and Treating the "Gluten Rash"

    Reviewed and edited by a celiac disease expert.

    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 have had a rash on my shoulder, neck, and shin area for a year! My doc said it was dermatitis-- My dermo asked me if I was dying my hair. Both prescribed cortisone lotion and suggested a cortisone shot. The PA put gloves on; the doc did not. When I went to Ireland for three weeks the rash disappeared which further suggests American wheat is bad news. When I got back the rash reappeared within a week: burning, itching. I am on my 4th doc and she continued the cortisone lotion and wants me to go back to my dermo to have a culture/biopsy. The bumps/welts look just like the pics for DH. Finally, I may have it figured out. I have suspected gluten sensitivity due to headaches etc. but did not know it could cause DH.

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    People, please inform and advocate for yourselves and loved ones. There are too many doctors who are completely uninformed and non-experienced with DH. I have been suffering from dermatitis herpetiformis/DH since the start of fall 2013 and have seen a total of 4 doctors all of whom seemed to have no experience or knowledge of what I was experiencing and all wanted to treat the symptoms with cream rather than confirm the cause.

    Even when I told each of them I went gluten free for 2 whole months and the DH went away, even when I showed them pictures of the rashes' progression starting/prior to scratching, full blown after scratching and as it was in retreat, they all gave conflicting explanations such as dermatitis, eczema, and "allergy." I knew much more than all of them COMBINED but since they hold the degrees and the prescription pads, they stuck to their lack of DH and kept the Dapsone to themselves despite my suffering and refused even a 2 or 3 day course for diagnosis like some doctors that I keep hearing about apparently do. WHY oh WHY could I not have found one of those doctors????

    After much investigating on my own, I am going to be seeing an allergist and internist who I have confirmed upfront has treated people with dermatitis herpetiformis/DH. You might have to fight like heck and call dozens or hundreds of places but at least you will not waste your time and money with doctors who are wrong and refuse to admit it all the while lengthening your suffering.

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    I have been suffering with severe itching for months! I saw a dermatologist and she said it was eczema. She gave me a cream which I put on my elbows and side of my butt and it seemed to help. Days later I started getting burning/itching and bumps on my neck, shoulders, low back, middle back and around to chest. They are small bumps and I do not see any blistering but they do turn to scabs after itching them. They don't itch 24/7 and seem to be worse toward evening. Does this sound like DH? They itching is severe when they do itch. I just saw my primary Dr. and she wants me to see a different Dermatologist. I am hoping this is not DH. Any input?

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    Besides the side effects of the dapsone my problem is oral medications in general. After a long discussion with the pharmacist my suspicions were confirmed, pharmaceutical companies roll tablets in modified food starches and flour to keep them from sticking together. I am extremely allergic to gluten and cannot risk oral medications so maybe the cream would be an option. I would welcome some relief from the blisters when I get that accidental gluten poisoning.

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    Try the Vaseline Intensive Rescue cream, together with a strictly gluten free diet when you have a flare up. All the other creams for itchy skin have oats in them...which are not gluten free. With this rash, the surface of the skin is often broken and the oats make it worse. Use only hypoallergenic soap without oats or oatmeal (Dove works great), as the skin dries out, making the itching worse.

     

    Good Luck!

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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!

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    I have had celiac and DH for 15 years...misdiagnosed for 10 of those years. I have been strictly gluten free for the last 5 years however earlier this year my DH came back, with a vengeance. I went to many doctors and nobody can tell me why this has come back. My best guess is stress at work which was pretty hectic for me at the beginning of the year.

     

    I found Dr Terry Wahl's on TedTalk (Minding Your Mitochondria) and she gave an excellent presentation on how she has effectively healed herself as she as MS. The idea that what we are eating can hurt and heal us intrigued me. I read her book which discusses a diet specifically for autoimmune diseases (celiac is autoimmune). I began her diet and also dove into hours and hours of research. I found another Dr with autoimmune issues and she wrote an excellent book called the Paleo Approach.

     

    After the last 8 months of DH on a gluten free diet... I changed to the "autoimmune protocol". AIP is meant to be an elimination diet that removes most allergens from our diet. once you heal you add one item in at a time and check for reactions. Ultimately you end up on a modified paleo lifestyle... Which has been amazing for me!! I sleep so much better, have tons of energy, my sporadic tummy issues are gone and most importantly my DH is completely gone. No drugs, just the right foods. Dapsone is dangerous as is destroys your healthy guy bacteria...which our damaged immune system desperately needs.

     

    If you have one autoimmune disease...you are susceptible to any other autoimmune disease (diabetes, multiple sclerosis, lupus etc)

     

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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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    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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    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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  • 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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