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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'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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    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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    Hello Everyone. Reading all your stories gives me hope to try all that is possible. I have read stories way up to 2013 and I hope all of you have been feeling better. rnrnIt is frustrating that doctors made a wrong diagnosis on us. Others suffered for as long as 20 years or more and still not being able to heal.rn rnI haven't been confirmed with DH or celiac but like all of you from reading and investigating on my own gave me somewhat of a confirmation of what this super itchy rashes that started on my finger is now all over my body. I will visit my doctor soon.rnrnI have been going to Internal doctor due gastro problem that started I believe last year and was given different medicines. This May I was having stomach aches and was told it that too much unreleased gas (due to pork and beef diet). That's when I noticed a blister type rashes on my fingers that come and go - red, burning pain, itchy. It spread on my elbows on Aug. I was given ointment that helped a lot. But I had it again. This time on my lower back, buttocks, side of my legs, knees, shoulders, neck, nape. I went to 2nd doctor and told me stop using the meds and gave me another one. It helped and another one breaks out again, I had the KOH test that scrapes the skin and tested for fungus and came out negative. She just told me you're clean and its drying and you will be fine soon. I AM NOT FINE up to this writing. The rashes spread over my legs front and back, its all around my arms, armpit and shoulder blades. I've been using now only the virgin coconut oil as moisturizer. But I can't use it in the office, too embarrass because I will smell like a big dessert or rice cake. I suspected that this is DH after reading a blog on gluten. I have used coconut oil, olive oil and oats as salve for the itch but after spreading it on my body; I itched nonstop and scratching it like crazy and took a shower right away.rnrnHas any of you read the book Eczema free forever by Rachael Anderson. I hope its not a hoax and be able to help a lot of people. rnrnWishing you all the best and we may all surpass this without going lunatic. Keep the faith.rnrnBy the way do you have recommendation on what else I can use as moisturizer? Or at least short relief of each. From yesterday I'm on gluten-free to the best of my knowledge and I still itch all over. Does it take a while to effect?

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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)

    Annalisa, Thank you so much for your posting and your encouragement.

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    Hello Everyone. Reading all your stories gives me hope to try all that is possible. I have read stories way up to 2013 and I hope all of you have been feeling better. rnrnIt is frustrating that doctors made a wrong diagnosis on us. Others suffered for as long as 20 years or more and still not being able to heal.rn rnI haven't been confirmed with DH or celiac but like all of you from reading and investigating on my own gave me somewhat of a confirmation of what this super itchy rashes that started on my finger is now all over my body. I will visit my doctor soon.rnrnI have been going to Internal doctor due gastro problem that started I believe last year and was given different medicines. This May I was having stomach aches and was told it that too much unreleased gas (due to pork and beef diet). That's when I noticed a blister type rashes on my fingers that come and go - red, burning pain, itchy. It spread on my elbows on Aug. I was given ointment that helped a lot. But I had it again. This time on my lower back, buttocks, side of my legs, knees, shoulders, neck, nape. I went to 2nd doctor and told me stop using the meds and gave me another one. It helped and another one breaks out again, I had the KOH test that scrapes the skin and tested for fungus and came out negative. She just told me you're clean and its drying and you will be fine soon. I AM NOT FINE up to this writing. The rashes spread over my legs front and back, its all around my arms, armpit and shoulder blades. I've been using now only the virgin coconut oil as moisturizer. But I can't use it in the office, too embarrass because I will smell like a big dessert or rice cake. I suspected that this is DH after reading a blog on gluten. I have used coconut oil, olive oil and oats as salve for the itch but after spreading it on my body; I itched nonstop and scratching it like crazy and took a shower right away.rnrnHas any of you read the book Eczema free forever by Rachael Anderson. I hope its not a hoax and be able to help a lot of people. rnrnWishing you all the best and we may all surpass this without going lunatic. Keep the faith.rnrnBy the way do you have recommendation on what else I can use as moisturizer? Or at least short relief of each. From yesterday I'm on gluten-free to the best of my knowledge and I still itch all over. Does it take a while to effect?

    I had severe itching on my buttocks and was crying with the itching. Went to my doctor and he referred me to a dermatologist. It took 3 appointments to finally figure out what it was. It was diagnosed with Dermatitis Herpetiformis. Had never heard of it other than I was allergic to Gluten. My itching started when I was 65 yrs. old, so I have had this now for 6 years. My Dermatologist prescribed Dapsone to deal with the extreme itching. As prescribed I took one every day and the itching disappeared, but I became extremely weak and went to the hospital and they realized I was losing blood so I had 2 blood transfusions. Taking a Dapsone every day will affect your blood levels, so after much experimenting as to what would help me, I came to realize taking only 2 Dapsone within one week would keep the extreme itching away. Dapsone was and still is my life saver, but I learned the hard way what would work for me. It beats scratching my skin with a paring knife, hard bristle brush and anything that would kill the itching. Unless you have experienced what I went through, you cannot begin to imagine how bad itching from DH can be. Wishing you all the best.

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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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