Be Free For Me Blog

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.

Prevalence
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.

Diagnosis
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
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.