Specific Gene Tied to Dermatitis Herpetiformis

Each bit of quality info we can gather about this disease will help us cope--some people have it worse than others.

It is enlightening to read such articles as there is paucity of information from the medical world.

So interesting to read about others in the Celiac 'boat.' I too am on a 100% gluten-free diet, however, with the occasional unwitting contamination, my elbows, knees, back, and often the bottoms of my feet react immediately. The more truly gluten-free I am, the quicker my body reacts to the offending protein. Experience is a good teacher!

I had a terrible itchy rash over most of my body for over 30 years ; it then developed into severe bullous dermatitis, while I developed many nutritional deficiencies - that's when I finally made the diagnosis , asking my dermatologist to confirm it by biopsy. I was right , and my doctor humbly recognized that he would have never thought of that disease .

At that time , I already had gone gluten free , so that the blood tests were negative . The jejunal biopsies still show an inflammatory state 2 years later, but I keep hope.

Thank you for the research , keep on looking and please , find us a drug that is less dangerous than dapsone!

Thank you America , from France.

I had the dermatitis herpetiformis in January but none of my lesion biopsies, blood tests, or intestinal biopsies conclusively diagnosed celiac but my gastrointestinal doctor is having me do the gluten-free diet. I am definitely one of the unusual ones with catching the disease before it was full tilt in the tests. I have had gerd surgery and my gall bladder removed about ten years ago. I have had the intestinal & bowel difficulties for over 20 years and can't wait to see if the diet clears these difficulties up.

My husband found out he had celiac 13 years ago. He developed an itchy rash on his eye lids very itchy and burning. We went to 3 different doctors in N.Y. no one could help him. I found a web site about dermatitis herpetaformis and got him off iodized salt. Within days it went away. That was 6 years ago. It came back a couple of months ago. We only used un- iodized salt in my house. Does any one have any suggestions. I have yet to hear if anyone else suffers from DH on their eyelids.

My husband gets Dermatitis Herpetaformis on his eyelids. Makes his eyes very red and watery too. Often looks like he's cried for a week. He also gets them around his brows when he wears sunglasses for any length of time. Just the hot weather often brings them out. Belt lines, close clothing brings them on. He is 90% better than he was before he went gluten free 8 years ago. He's also Coeliac. Dermatitis Herpetaformis is horrible. Turned him into a monster for a few years until diagnosed.

I went to my doctor last Oct. and was diagnosed with Dermatitis Herpetiformis and Celiac Disease. I am trying so hard to be 100% free...Dermatitis Herpetiformis on elbows, underarms , on knees was much better...I must have gotten gluten somewhere..I have broken out so bad ...summer has got to be the worse..itching burning... Thanks for this site and for the conversation...Anything that will cool down the itching and burning besides a prescription ?

Great article. I may need to resort to genetic testing. Nearly six years ago, I experienced the itchy, red rash on my arms and legs for nearly 9 months. I must have had Dermatitis Herpetaformis but the dermatologists could not determine what it was. They kept treating me with steroidal creams and steroids until there was nothing left to try. It was pretty disheartening. I was about to give up when I read an article about a young boy and his science project about diabetes and that's when I realized I, too had the same symptoms he described. I had been misdiagnosed all my life as having IBD, but immediately on a gluten-free diet, the rash disappeared and never returned. Sure, it's been tough living Gluten Free and maybe even harder to make others understand celiac disease. Since I've been gluten free for 5 years, all gastro tests have been clear and they have not been able to determine the diagnosis of Celiac Disease. But why is it that doctors never focus on your diet when there is a problem with the skin?

Hi! I have had Dermatitis Herpetiformis 18 years and amd doing well. I can recommend: If you have a diet of absolutely 100 % free of gluten ( NATURALLY free), you'll not get any 'patches' on your skin again. In some countries, according the law, the gluten free products can contain 0.03 % gluten and still be called a gluten free product. So, you may still be eating small quantities of gluten and get the symptoms on the skin. Only naturally gluten free diet helps. ALWAYS read ' ingredients' on the package, and do not trust automatically the ''gluten-free'' label. Best regards to you all.

Diagnosed in mid 50's at University of Washington by famous researcher studying the the endoscopy tube - despite not having obvious symptoms as a young teen I and other children were put on the Gluten Free diet - our biopsies were positive and at least my mother had full blown celiac . The Dermatitis Herpetiformis didn't show up until age 30 when I stopped the diet - finally I learned my lesson after three positive skin biopsies and thinking I had scabies and finally experiencing dramatic relief with both Bromocriptine and later after another dietary lapse Dapsone . I believe the UW researcher saved

my life and made me a much healthier person by encouraging me to follow the diet even at such a young age.

I was diagnosed with Dermatitis Herpitiformis while in the US Naval Hospital, Bethesda Md. in 1953 and it was months before it was confirmed. No one had any idea that it was gluten connected then and I took Diasone of Sodium and Dapsone for 55 years before I was advised to avoid gluten by the VA. By that time, the Dapsone left me with severe neuropathy of the feet. Since going on a strict gluten free diet with colchicine pills, it is finally under control. When diagnosed, I was told it was not an allergy but iodine should be avoided. My Doctors scoffed when I told them that I break out when I drink Beer. I was right all the time and it took years before the medical community accepted that fact.