Dermatitis Herpetiformis (DH)

Everyone with dermatitis herpetiformis (DH) has celiac disease, but their primary symptoms are external, rather than internal. DH presents as a severe rash on the skin. About five percent of celiacs have these external symptoms of DH. People with DH also experience intestinal damage, but generally without the typical gastrointestinal symptoms.

DH is characterized by blistering and intensely itchy skin, and is often misdiagnosed as eczema. The rash is found on the elbows, buttocks, knees, back, face, and/or scalp. It is usually symmetrical, meaning that it occurs in a mirror image from left to right.

Diagnosis is often initially made when it becomes clear that the rash does not respond to eczema medication. To confirm the diagnosis, a small skin biopsy is taken from the normal-looking skin next to a blister site. The presence of IgA antibodies confirms a diagnosis of DH.

The treatment for DH is the same as for celiac disease: a strict gluten-free diet for life. Sometimes drug interventions are used as well. In addition to avoiding gluten, many people with DH find it necessary to avoid iodine and sometimes the related chemical family of bromines.

The National Institute of Health Celiac Awareness Campaign provides excellent information about the symptoms, diagnosis and treatment of DH at http://celiac.nih.gov/Dermatitis.aspx. They also provide a two-page educational PDF on DH at http://www.celiac.nih.gov/Materials.aspx

The American Osteopathic College of Dermatology provides information about DH at http://www.aocd.org/skin/dermatologic_diseases/dermatitis_herpeti.html

Also see "What triggers DH" on the Columbia Celiac Center website at www.celiacdiseasecenter.columbia.edu

From Britain: www.dermatitisherpetiformis.org.uk/whatisdh


Personal Stories

"I just became aware that there are topical creams available for DH.  (Maybe others are more aware than I.)  I have been suffering along with DH because I did not want to be taking the drug Dapsone for the sporadic episodes and breakouts that I get, but after being convinced to go back to the dermatologist I was given some topical creams and they WORK!  If you need to apply the cream to a large surface area then the same precautions exist as for Dapsone and you need to have your blood monitored, but for those who get just a few eruptions from time to time get the creams! 'Locoid Lipocream' safe for the face and around the eyes, or 'Clobetasol Propionate' for the rest of the body." Sharon Kumpf, a San Diego CSA support group member, 9/08

Read another personal account of someone struggling with Dematitus Herpetiformis (DH) and how the ointment Dapsone helped.