Colorado Springs, Colorado

I have very much enjoyed this website and have saved it as one "My Favorites". I also gave the website address to a relative of mine that I found out has DH (was diagnosed many years ago). I've read that DH is genetic and my relative is the only person in my family that I know has it. Anyway, keep up the great work on this website. It is of use to anyone with DH!!!
Amy

Elgin, Illinois

It took my doctor 2 years to figure out what the heck this was. Because the rash has been isolated to the palms and and fingers of both hands- contact allergy was the initial diagnosis. After using every possible topical solution there was and bottles of Clarinex and Claritin - nothing helped. Then I had a full blown reaction - Chest, back, legs, and arms - I was rushed to the hospital and was treated for scabies - WHICH I knew was not problem - FINALLY - it was by process of elimination that the possibility of DH came into play and the diagnosis was in. I was informed that I suffered from the condition called Dermatitis Herpetiformis. However, my doctor never made reference to Celiac Disease. It wasn’t until I found your website that realized that this skin condition has an associated disease. Finally a website that helps me understand.

I do have a few questions – since the condition is located only my hands and fingers (for the past 2 years)– will this spread elsewhere on my body? Do seasons of the year affect condition to flair ups or is this ONLY diet related?

Florida

I was so happy to find this website. I have had DH for 3 years now. At first the dapsone helped to clear the rash. This last year I have had a severe outbreak on my legs, arms and back. My doctor has been readily increasing my dapsone and added tetracycline? I am not so sure what that is doing. I have just recently started to take the diet seriously. I was not educated in DH at all and still feel that I do not know all I should. I have found that eating is so restrictive and I am not sure if I am eating the right foods. Can someone direct me to a website that really spells out the diet and restrictions? So far I have only experienced skin problems but keep reading that someone with DH has ceiliac also, is this true and should I see a specialist for this?
any help will be greatly appreciated

Sydney Australia

Very interesting. My two year old is currently under investigation for bowel problems and is having the small bowel biopsy soon. Finding out about coeliac led me to DH. I wasnt aware of the close relationship. My mother has DH. She wasnt aware of the link either. The internet is a fantastic learning tool and this site is excellent. Ive learnt heaps, thanks.

massachusetts

Hi,

I am waiting skin biopsy results but it looks pretty conclusive that I have DH. I was recently told I had celiac disease and then told I didn't have it because my duodenal biopsy was negative. I tested positive for endomysial antibody and have collagenous collitis. Am I correct in assuming that all DH people have Celiac? I am a little confused. I look forward to talking to anyone about this new experience.

ann

Lake Worth, FL

Was diagnosed with DH and Celiac in March of this year. I am doing my best on a gluten-free diet but the skin problems are lot improving. I am not on dapsone, nor has a doctor recommended it. How long can I expect to experience the rashes and severe itching assuming my diet stays gluten-free. Looking for advice and encouragement. Also, what are the most over-looked foods with respect to incorrect assumptions of being gluten-free?

Akron OH

I was diagnosed when I was 12 with DH. My family doc had no clue what was up with the rash. I was fortunate to be referred to a local dermatologist who was a long and well respected vertern in the area. I was the topic of the day, and was shown to his associate as well. I was diagnosed imediately and was given Dapsone. To me it's a wonder drug that reacts quickly. I'm now 45 and have been in and out of remission over this span of 33 years. When visiting my gasterentologist and filling out the history section of her forms indicated my DH, caused her to look into celiac sprue. Bingo-have that to. Switching to the gluten free diet REALLY helps both conditions trmendously!!!!! The difficulty is remaining totally gluten free. Seems like every food has something that has small amounts of gluten. The big killer is distilled vinegar. With an absolute gluten free diet-no rash eruptions!! and my celiac condition is not an issue. Sticking to a higher protein diet with limited carbs also helps the bloating. My son when he was 2 years old broke out with a number of blister, and my new dermatologist biopsied the rash and he too has/had DH. This is very rare, and he is now 23 and has not broke out since the initial rash 21 yrs ago. Best advise......stay off GLUTEN!!!
Mike

Canada

Hi! I've been a dermatitus sufferer for years now and hopefully from this website and peoples comments I will now have a better understanding of my condition and what in foods can make it break out. Hopefully I will get around to posting a pick.

Colorado

I just want to cry now that I have found this site. My mother has been going thru "HELL" for the past two years. We knew she had celiac for about 5-6 years but then the DH came on two years ago. The local doctors thinks she is out of her mind, (some literally), luckily she has one good doctor, but he doesnt know what to do. I just got hooked up on the internet at my home where I can really search, tomorrow I'll get my printer. I cant wait to print out the info you have. It will help her so much just to know that she isn't crazy, like some "professionals" said. Thank you so much. You dont know what this means.