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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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    Guest beverly lees

    Posted

    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.

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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.

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    Guest Pamela

    Posted

    I was misdiagnosed for 41 years and work in the healthcare field, my dermatologist had no idea what my rash was, had she known I would have been diagnosed 20 years sooner, I printed out material on Dematitis Herpetiformis from the internet and send it to her.

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    Guest Hilary Adams

    Posted

    I basically diagnosed myself with DH and found dapsone. I use it sparely and only with an outbreak. My information 10 years ago was that you can stop the itching and burning quickly and it works! If you are itching and can't stand it (no kidding!) one dose (I use 50 mg) will stop the itching within 30 minutes. I can usually get away with just one dose unless the outbreak is severe or the hidden gluten a large amount. Thanks for bringing it up!

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    Guest hans

    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.

    Can you tell me what kind of dapsone cream that you used and what's the difference between the oral and the topical cream? I am afraid of its side effects since I've been taking lots of different drugs caused of misdiagnosed in the past one year. Thanks.

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    Guest oscar

    Posted

    Check for scabies. I had something similar and waited a month before the second doctor I saw said it could be scabies. They gave me a cream prescription and now I am getting way better.

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    Guest Joe Eustis

    Posted

    My dermatitis herpetiformis manifestation began at age 64 and it took my dermatologist one year to finally diagnose it. Dapsone initially did the job, but it is very dangerous as it causes anemia by destroying your red blood cells. After about 6 months on Dapsone (and recovering from prostate cancer surgery), the Dapsone lost its effectiveness. One year after the dermatitis herpetiformis diagnosis, I was diagnosed with celiac disease and began the gluten-free diet. The rash continued to flare up and really got worse when I began taking Synthroid for low thyroid. I suspected the iodine was aggravating the dermatitis herpetiformis. A desperation visit to renowned dermatologist, Dr. John Zone (Salt Lake City), confirmed that a small percent of us dermatitis herpetiformis folks are also sensitive to iodine and must reduce iodine intake for a while. After about 2 years on the gluten-free diet and watching my iodine intake, I am doing much better. This information has helped another iodine sensitive dermatitis herpetiformis member of our local New Orleans CSA chapter.

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    My dermatitis herpetiformis manifestation began at age 64 and it took my dermatologist one year to finally diagnose it. Dapsone initially did the job, but it is very dangerous as it causes anemia by destroying your red blood cells. After about 6 months on Dapsone (and recovering from prostate cancer surgery), the Dapsone lost its effectiveness. One year after the dermatitis herpetiformis diagnosis, I was diagnosed with celiac disease and began the gluten-free diet. The rash continued to flare up and really got worse when I began taking Synthroid for low thyroid. I suspected the iodine was aggravating the dermatitis herpetiformis. A desperation visit to renowned dermatologist, Dr. John Zone (Salt Lake City), confirmed that a small percent of us dermatitis herpetiformis folks are also sensitive to iodine and must reduce iodine intake for a while. After about 2 years on the gluten-free diet and watching my iodine intake, I am doing much better. This information has helped another iodine sensitive dermatitis herpetiformis member of our local New Orleans CSA chapter.

    Thank you. This the information I was looking for. Do you still take Synthroid or another brand?

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    Guest Kathryn

    Posted

    Check for scabies. I had something similar and waited a month before the second doctor I saw said it could be scabies. They gave me a cream prescription and now I am getting way better.

    Trust me, it's not scabies. If you have DH, you know it's different from anything else.

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    Hi, thanks so much for posting this! I have celiac disease and a rash that looks like DH on my elbows but my doctor took a biopsy and says it's not DH it's "urticaria". I'm confused because, from what I understand urticaria simply means "hives" yet the symptoms I'm experiencing in relation to my "hives" are that of DH, so I wonder if this is a misdiagnosis... were your hives at first misdiagnosed? Thanks!

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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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