Dermatitis Herpetiformis

I, Don Hooser, have dermatitis herpetiformis (DH).  It's a real "thorn in the flesh," but my trials are small compared to many people, and the trials of this life are certainly small compared to the glorious blessings God has in store for us in the next life.  And I can see how this trial has worked for good in my life (see last paragraph).

 After experiencing symptoms from 1997 to 2000 and going to multiple dermatologists and other doctors, I finally received the correct diagnosis. DH is considered an incurable lifelong condition once it has been triggered.  It is an intensely itchy skin eruption of blisters. It is more common in people originally from some areas of northern Europe. The symptoms are intense burning, stinging and itching.  The most common locations are the back, face, arms, and legs.  Topical ointments do very little to relieve symptoms, as the stinging largely comes from deep under the skin surface.

DH is an extreme sensitivity to gluten, so I must be on a strict gluten-free (GF) diet.  Gluten is a protein in wheat, rye, barley, and perhaps oats.  The GF diet eliminates many foods, including wheat bread or anything made from wheat flour.  To learn more about the GF diet, see Gluten-Free Diet on this website.

The looks of DH varies--the lesions often start as red bumps that vary in size and may be in clusters. They often start as tiny water blisters, but these are quickly scratched off. Before they form, the area usually has a burning feeling. They may heal over in one or two weeks, or it may take much longer, and new spots continue to appear.

The cause of DH is a sensitivity or "allergy" to gluten, a protein found in wheat and some other grains. Usually allergies, likes hives and hay fever, are made by the body's IgE system. This can be treated with pills and shots. DH is different, and is an allergy of the IgA system. IgA is an antibody produced in the lining of the intestines. The usual allergy treatments are useless.

The rash is caused when gluten in the diet combines with IgA, and together they enter the blood stream and circulate. They eventually clog up the small blood vessels in the skin. This attracts white blood cells (neutrophils), and releases powerful chemicals called complements. They actually create the rash. Iodine is required for the reaction, so people with DH should avoid using Iodized salt.

Celiac disease (CD) is the "cousin" of DH.  When the damage from gluten intolerance is to the intestines instead of the skin, it is CD.  CD is also called gluten-sensitive enteropathy (GSE). Some people only have the CD, some have CD and DH, and some just DH. It is not known why some develop one and not the other.

Diagnosis of DH usually requires at least one skin biopsy, and sometimes a blood test (looking for anti-gliadin, anti-reticulin and anti-endomysial antibodies). Once confirmed, treatment will be lifelong, although severity may wax and wane. Complete elimination of gluten is curative, but improvement takes months. The gluten-free diet is very difficult, because only a minute amount of gluten--a crumb or less--can trigger a reaction.  Gluten is an ingredient in many foods, and there often is gluten contamination in foods that don't list gluten as an ingredient. Many restaurant foods and prepared foods contain gluten.

Dapsone is a drug that reduces symptoms in some people with DH, but it seemingly has no effect on me.

One benefit of having DH is that I generally eat a more healthful diet than ever before.  Most sweet and starchy food contains wheat flour--like breads, pastas, cake, cookies, pie crust, etc.  If I think a food contains gluten, I pass it up, which means I pass up most junk food that I am exposed to.  So I'm healthy overall.  Maybe I'll live longer because of this.