Dermatitis Herpetiformis - a.k.a. DH

The CSA defines Dermatitis Herpetiformis (DH) as an important associated disorder or complication of Celiac Disease which is manifested in the form of a skin rash. There is strong evidence that the changes in the intestinal mucosa and the immunologic findings in the majority of patients diagnosed with DH are identical with those found in Celiac Disease. Gluten has been found to have a close relationship with this skin rash. DH is often referred to as "Celiac Disease of the skin" while CD is referred to as "Celiac Disease of the gut." Click here for more information about the symptoms of DH (including pictures).

Typically, DH can be characterized as an intensely itchy skin eruption distinguished by the formation of small papules or vesicles. The patient may perceive having red bumps and blisters. The symptoms of intense burning, stinging and itching cannot be overemphasized. It is common for DH lesions to be symmetrically distributed on the extensor surfaces of the body: over the elbows, knees, buttocks, scalp, posterior, neck, sacral (lower end of the spinal column) and shoulder areas. The face and facial hairline are occasionally affected. And rarely, the lesions occur within the mouth. Although its severity may vary, it persists indefinitely and is a lifelong condition. There are only a few patients in whom the disease remits for long periods of time.

DH was formerly described in literature as Duhring's Disease. It has a typical onset in the teenage years or in the third or fourth decades of life. In the U.S., the presence of diagnosed cases is estimated to be about 1 in 10,000 with a male/female ratio of 2:1. It is more common in whites and rare in people of African or Asian descent.

I was already "lucky" enough to be 1 out of 133 to have Celiac Disease. Now I am even more "lucky" - 1 out of 10,000! From what I have read, it is pretty rare to have both CD and DH - somewhere around 20% of CD patients also have DH. I was officially diagnosed with DH on Wednesday by a Dermatologist although I had suspected my elbow/knee skin rash was DH for many months now. The included picture is what my elbows look like about a week after eating Gluten. Same thing on my knees. In another week, the small blisters (which are extremely itchy) will turn to scabs and then eventually fade away. Why can't my luck translate into winning the powerball lottery which has a 1 in about 200 million occurrence? Guess I am not that lucky.

Regardless, the treatment for Celiac and DH are the same - lifelong Gluten Free Diet - so really nothing new for me.

Some questions I asked my Dermatologist...

Why do I have the DH rash after being Gluten Free for 8 months? - The skin can take up to 2 years or more to recover from Gluten ingestion after going Gluten Free. The intestines recover much faster.

Are there any medications to assist with DH? - Dapsone can be taken for this disease but has serious side-effects and you must be closely monitored while taking it. Taking a super potent steroid ointment like Clobetasol for about 2 weeks seems a little safer and should help clear up the rash and prevent the itching and burning but following a GF diet is the recommended approach for treating DH.

Are there any related diseases to DH? - Thyroid disease is most commonly associated with DH. Other autoimmune disorders that people with CD are at greater risk to develop include Addison' s disease, autoimmune chronic active hepatitis, Alopecia Areata, Graves' disease, insulin-dependent diabetes mellitus (type 1), myasthenia gravis, scleroderma, Sjogren's syndrome, systemic lupus erythematosus, and thyroid disease. This is not a complete list. Thyroid diseases and diabetes are the two most commonly associated diseases. It is not uncommon to have other skin conditions as well.

Anybody out there have DH and want to share their experiences?