A Seven-year Itch with Dermatitis Herpetiformis

October 12th, 2012 Nancy

Photo Credit: Wikepedia

 

Please welcome J. of  cygnusopus.blogspot.com as she shares her 7 year battle with a terrible  itchy rash.  It turns out that rash was  caused by an autoimmune disease called Dermatitis Herpetiformis (DH) or Duhring’s disease which is connected with gluten intolerance.  Since I had never heard of this disease, I asked J. to share her story here.  I hope her story can help one of my readers who might be unknowingly  suffering from the disease.

 

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When I was 21, I returned to America after 16 months is 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 like crazy.  I had no idea what was causing them, because they would come and go.

 

I went to a doctor just a few weeks after getting back to America.  He looked at the blisters, which had been scratched to oblivion, and he wasn’t certain what to call it. 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.  The diagnosis was usually eczema, psoriasis or come back when the blisters erupt again.

 

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 just to be certain.

 

She found a blister that was intact, cut it out and sent it to a lab. 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.

 

The blisters are fiercely itchy and seem worse at night. For me, the blisters would most often erupt during times of extra stress like my menstrual cycle or times of high emotional stress. DH usually manifests between 20-30 years of age but can occur earlier or later.

 

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 symptom of Celiac Disease. However, there is still enough unknown about it 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 symptoms were gone and my blisters have not returned. In my case, the DH was a blessing in disguise. I doubt I would have recognized the symptoms of Celiac Disease until I was suffering from one of the more severe side-effects.  Because my skin was so problematic, I was forced to find someone who could finally tell me what to do.

 

In the States, DH and Celiac Disease often get misdiagnosed, but fortunately, more doctors are getting educated about these diseases. Celiac related issues are commonly diagnosed in Europe and have been at the forefront of medical studies there for some time.  This makes sense because DH and Celiac Disease 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 resources below that have more information. I tried to list a mixture of  web sites from both the U.S. and Europe that cover both DH and Celiac Disease .   Hopefully these resources will  fill in the gaps for anyone wanting more information. I also included a site that address the issue of vitamin deficiencies for those with DH or Celiac Disease.

 

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.

 

Dermatitis Herpetiformis Resources:

 

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J. is a stay-at-home mom with three kids. She and her family have traveled various parts of the world for her husband’s job and most recently reside in Virginia. J. blogs at cygnusopus.blogspot.com and sometimes covers gluten-free information there.

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