ASK Shelley Case: Dermatitis Herpetiformis – Find Out More!

Question: My Aunt just got diagnosed with Dermatitis Herpetiformis. She said this is a type of celiac disease that affects the skin. Shelley, can you tell me more about this?

Dermatitis Herpetiformis (DH) is another form of celiac disease. This chronic skin condition is characterized by an intense burning, itchy and blistering rash. The rash is symmetrically distributed and commonly found on the elbows, knees and the buttocks, but can also occur on the back of the neck, upper back, scalp and hairline. Initially, groups of small blisters are formed that soon erupt into small erosions. Most people with DH will also have varying degrees of small intestinal villous atrophy although many will have no bowel complaints. A small percentage may present with bloating, abdominal pain and diarrhea, especially if the bowel involvement is severe, and some individuals may show evidence of malabsorption and malnutrition.

Approximately 10% of individuals with celiac disease have DH with a male to female ratio of 2: 1. The age of onset is typically between 25-45 but can also occur in children and older adults.

Individuals with DH are frequently misdiagnosed with other skin conditions such as eczema, contact dermatitis, allergies, hives, herpes or psoriasis and treated with a variety of topical creams. The only way to correctly diagnose DH is a skin biopsy from unaffected skin adjacent to blisters or erosions. A small intestinal biopsy is not essential if the skin biopsy is positive for DH.

Treatment for DH is a strict gluten-free diet for life. For some individuals, Dapsone, a drug from the “sulphone family,” may be prescribed to reduce the itching. Response to the medication can be dramatic (usually 48-72 hours). However, Dapsone has no effect on the ongoing immune response or intestinal atrophy. Following a strict gluten-free diet will result in:
•    Improvement in the skin lesions.
•    Major reduction in drug dosage for those people initially started on Dapsone. After a time, it is often possible to discontinue the drug to control the skin rash. Flare-ups due to inadvertent or intentional gluten consumption may require temporary use of Dapsone.
•    The gut function will return to normal.
For more information and photos about DH see the National Digestive Diseases Information Clearinghouse (NDDIC) website.

NOTE: Once a diagnosis of celiac disease or dermatitis herpetiformis is confirmed, it is essential to consult with a registered dietitian with expertise in celiac disease and the gluten-free diet for nutritional assessment, diet education, meal planning and assistance with social and emotional adaptation to the new gluten-free lifestyle. Also, joining a celiac support organization for further information and ongoing support is highly recommended.

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3 Responses to “ASK Shelley Case: Dermatitis Herpetiformis – Find Out More!”

  1. Mary Donohue Says:

    I developed DH when I was around 14 years old. I was not diagnosed with DH until I was 21 and was given the choice of the dapsone or a gluten free diet. I went on 4 dapsone a day because it was cheaper than being on a gluten free diet. I stayed on the Dapsone until my 50’s when the Dapsone no longer worked and at which time I was forced to go on a gluten free diet. The Dapsone was effective in keeping the rash away as long as I took them every day. I was under the doctors care for years to come because of the horrific side effects of the dapsone. I was lucky I never had any of the side effects.

    I had DH without the gut reaction until I got full blown Celiac disease, at that time all i had was the rash.

  2. Melissa Says:

    it’s my understanding if you have DH you automatically have Celiac even without the gut reactions.

    I developed DH when I was 21 (2 years after having a baby). Before the rash showed up I also lot a large amount of weight very rapidly…about 2 years after my pregnancy I gained the weight back very rapidly (and then some). Nobody knew what the rash was until I came up with DH. Even my doctors brushed me off and ran the tests/biopsy’s just to appease me and they were shocked when everything came back positive! I’m lucky in that my rash has only been on my feet (maybe not to lucky as that’s what prolonged my diagnosis) but at least I can cover it up when it flares!

  3. Be Free For Me Blog » Blog Archive » Win-It-Wednesday: Dew Puff Face & Body Cleansing Sponges Says:

    […] celiac disease or food allergies, Dew Puffs are perfect for any type of skin irritation caused by Dermatitis Herpetiformis, eczema or any other type of […]

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