Dermatitis Herpetiformis - DH

The elementary school secretary called me this morning. My 7 year-old daughter is in her office. Can the secretary spread Calamine Lotion on Megan's hands because they are red, itchy and have small blisters on them? "I'm sure it won't hurt," I say with a sigh.

Poor Megan. It seems she was born with Dermatitis Herpetiformis or DH. I have ten children, all with Celiac Disease and all with some form of DH. Some of the girls have it on their heads in their hair, back of their necks, tops of the buttocks and arms and legs. Most of them have it very mildly. The boys tend to have it right in the middle of their chests, where hair will someday grow.

This is a sample of what DH can look like on an arm.
But Megan, has had DH head-to-toe from the moment the NICU (Newborn Intensive Care Unit) began feeding her baby formula. She had a condition most of my babies had, called Transient Tachypnea, which kept her in the NICU for 2 weeks. I was told by the nurses and by the formula-makers that there is no gluten in baby formula. hmmmmmm...... I was never convinced because of how Megan reacted. She was fine when I finally put her on goat's milk. Since Megan was born to an experienced mother, I learned to give her a clean (gluten-free) diet. We have kept her DH under control so that she suffers very little. Because her skin is so sensitive, she has become the family gluten-barometer. I have treated her DH, topically, with hydrocortisone creams.

I have learned a few things about DH. If the Celiac is not gluten-free then the DH may flair and the flair could last 2 years! If every ingestion of gluten causes a possible 2-year flair, then the patient would NEVER be rash-free! We noticed that the severity of the flair was impacted by citric acid in the diet.  That has to do with missing enzymes on the villi. Check out this site for a clearer explanation of the job of enzymes related to celiac disease.When I was a child, I had severe DH on my arms and hands. In those days, I was simply diagnosed with "eczema". My mother and I discovered that it was so much more severe when I ate fruit (apples, oranges, peaches) or spaghetti, anything with high citric acid. Thus we blamed the oranges. Megan and I can now devour all the citrus fruit we want now, as long as we keep the gluten out of our diet!