Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate
  • Record is Archived

    This article is now archived and is closed to further replies.

    Miranda Jade
    Miranda Jade

    Dermatitis Herpetiformis: Diagnosing and Treating the "Gluten Rash"

    Reviewed and edited by a celiac disease expert.
    Dermatitis Herpetiformis: Diagnosing and Treating the "Gluten Rash" - Photo: CC - Anosmia
    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.

    Celiac.com Sponsor (A12):
    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.

    Resources:

    • Open Original Shared Link.
    • Open Original Shared Link.
    • Open Original Shared Link.


    User Feedback

    Recommended Comments



    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.

    Link to comment
    Share on other sites
    Guest Barb

    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.

    Link to comment
    Share on other sites
    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.

    Link to comment
    Share on other sites
    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!

    Link to comment
    Share on other sites
    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.

    Link to comment
    Share on other sites
    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.

    Link to comment
    Share on other sites
    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.

    Link to comment
    Share on other sites
    Guest Jaynie
    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?

    Link to comment
    Share on other sites
    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.

    Link to comment
    Share on other sites
    Guest PLJ

    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!

    Link to comment
    Share on other sites
    Guest Magda
    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!

    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?

    Link to comment
    Share on other sites
    Guest s.middleton

    Posted

    My daughter who is 4 years old was recently diagnosed with DH. She had caught chicken pox and after 2 weeks of having it we took her to the doctors only to be told that it was normal to last this long. After 6 weeks we returned to the doctors who told us it was bites. 4 weeks later we returned yet again and this time admitted to hospital. The doctor tested her for chicken pox, which was positive, but also tested her for DH, even though the dermatologist said it was highly unlikely. Well it came back positive. After looking on the internet of pictures of the rash I believe my daughter had it when she was just 7 months old and was misdiagnosed. I am left feeling let down and guilty that I have let my daughter down. She is due to have an endoscopy next week to confirm celiac.

    Link to comment
    Share on other sites



    Guest
    This is now closed for further comments

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • About Me

    Miranda Jade

    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.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Related Articles

    Scott Adams
    Iodine testing for DH: This is an old procedure used to create DH blisters. By applying a 30 percent solution of iodine as a patch, a DH outbreak can be created. This may be applicable in some patients when a biopsy is needed and no blisters are available.
    Immunofluorescence: The indirect immunofluorescence test shows that the serum of a patient contains specific antibodies that bind to different areas of the epithelium. The direct immunofluorescence tests by a skin biopsy shows a specific diagnosis pattern of DH. Traditionally this biopsy is obtained from the buttocks. If no outbreaks are observed in this area, the biopsy is recommended for another area where the itching is observed. DH Drugs: The common drugs used to initially control the blisters are: Dapsone, Sulfoxone, and Sulfapyridine...


    Scott Adams
    Dermatitis Herpetiformis Summary
    A dermatologist who is experienced at recognizing dermatitis herpetiformis should do the biopsy. The biopsy is taken of one of the blisters or the skin at the edge of the lesion. The biopsy should not be taken from the lesion, but from the edge or just near the lesion - it can be misdiagnosed as herpes if taken from the lesion. An iodine patch can be used to bring about a blister. If one has dermatitis herpetiformis, a blister will form; if not, one does not have dermatitis herpetiformis. A positive dermatitis herpetiformis biopsy will show IgA antibodies. The lab should be looking for IgA deposits in a granular line at a specific location in the skin. Some dermatologists use an immunofluorescence method of examination. dermatitis herpetiformis usually...


    Kristen Campbell
    Gluten intolerance often presents itself in ways unexpected, including several common skin conditions.  Ranging in severity from dermatitis herpetiformis to dry skin, avoiding gluten may have more to do with your plaguing skin concerns than you imagined.
    Here are some common dermatological concerns associated with celiac disease:

    Dermatitits Herpetiformis—This painful, blistery condition can be very stressful, especially when misdiagnosed.  An inflamed, itchy rash, dermatitis herpetiformis begins as tiny white filled blisters or red spots around hair follicles.  Trying to hide or disguise DH, as well as trying to treat it when misdiagnosed can be incredibly stressful for a person. Eczema—Eating a gluten-free diet is becoming an increasingly popular mode of treatment for eczema...


  • Recent Activity

    1. - knitty kitty replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

    2. - Scott Adams replied to DMCeliac's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Canned tomato sauce, ricotta?

    3. - PlanetJanet replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

    4. - PlanetJanet replied to PlanetJanet's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Modified Food Starch


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,716
    • Most Online (within 30 mins)
      7,748

    Peggy Bohan
    Newest Member
    Peggy Bohan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Popular Now

    • Toaster
      8
    • Travel Celiac
      10
    • Matt13
  • Popular Articles

    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
  • Upcoming Events

×
×
  • Create New...