A 7 Year Itch: living with Duhring's disease

My hands still in recovery

I should have known that my skin would bear the brunt of my health issues. As a kid, I had patches of dry skin on my knees and elbows every winter. In high school I developed allergies to almost all makeup after wearing heavy stage makeup for a play I was in. That developed later into allergies to almost all face creams.

As a mom, my hands started cracking and bleeding. I found out that I’d developed an allergy to baby wipes, which then translated to most soaps, cleansers and lotions (Dove Sensitive Skin and Eucerin are okay, so far).

This has nothing to do with, as far as I know, the primary issue of this post…

When I was 21, I returned to America after 16 months in Europe. My time in Europe was great but towards the end of my stay, I started getting scaly patches of skin at the edges of my scalp and sometimes I’d get little blisters on the bony parts of my body. They itched ferociously and I had no idea what was causing them because they would come and go.

I went to a doctor after getting back to America and he looked at the blisters, which had been scratched to oblivion, and wasn’t certain what they were. He finally pronounced it as some type of eczema and sent me on my way.

That was doctor number one and year number one. The rest of the doctor visits blur, but throughout the next seven years, I visited 6 other doctors, rotating between family physicians and dermatologists, and the diagnosis was usually eczema or psoriasis.

Finally, on year seven while living in Virginia, my family physician referred me to a dermatologist. I sat down with her and explained the symptoms. At the end of my explanation, she said she knew exactly what it was but needed to take a biopsy to be certain.

She found a blister that was intact, cut it out and sent it to a lab. And she was right. I had Dermatitis Herpetiformis (DH) or Duhring’s disease.

DH is a skin condition characterized by watery blisters that erupt periodically (most often on the back, hairline, elbows, knees, face, buttocks, back of neck but can erupt on other parts as well) on the skin. DH usually manifests between 20-30 years of age but can occur earlier or later.

The blisters are fiercely itchy and seem worse at night. For me, the blisters would often erupt during times of physical stress like my menstrual cycle or high emotional stress.

DH can be treated with Dapsone, but the drug requires regular blood monitoring as it can affect the red blood cells. Dapsone also only addresses the eruptions and not the intestinal problems causing it. DH is a symptom of gluten in the diet and can be eliminated by following a gluten-free diet.

Because gluten causes DH eruption, some consider DH a by-product of celiac disease. However, there is still enough unknown that other camps aren’t comfortable lumping them together. Either way, what works for those with celiac disease, works for those with DH, so my journey on a gluten-free diet began.

Within days of being gluten free my blisters were gone and have not returned. In my case, the DH was a blessing. Although I’ve never been officially diagnosed with celiac disease, the chances I have it are high. But without the skin eruptions of DH, I could have suffered for years and developed more serious complications before being correctly diagnosed.

In the States, celiac disease is often misdiagnosed. Fortunately more U.S. doctors are getting educated about it. Celiac related issues are more common in Europe and have been at the forefront of medical studies there for some time, which makes sense: DH and celiac are mostly European diseases and are particularly common in those of Irish descent.

I realize I’ve probably raised more questions than I’ve answered, so I’ve listed some sites below with additional information. I’ve tried to get a mixture of U.S. and European sites and DH and celiac sites to cover a spectrum of thought. I also included a site that addresses the issue of vitamin deficiencies in those with DH or celiac.

It’s my hope that others won’t have to go through seven or more years of agonizing blisters. If you suspect you might have DH, see a dermatologist and request a skin biopsy. The tricky part is leaving the blisters alone so that a viable one can be taken.

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J. blogs at cygnusopus.blogspot.com about her three precocious children, gluten-free living, life as a nomad and other random things.