190.DH as a celiac symptom Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes part 2

Re: DH as a celiac symptom: from ARLENE MEYERS on 2007-02-26

I WAS BREAKING OUT IN RASH.....EYELIDS, BACK OF EARS AND NECK.....DERMATOLOGIST DIAGNOSED AS EXCEMA/CONTACT DERMITITIS.AND PERSCRIBED STEROID CREAMS. I HAVE READ THAT THESE CREAMS ARE HARMFUL TO SKIN ETC FOR PROLONGED USE.

I TRIED CUTTING OUT ALLERGY FOODS THAT MIGHT BE TRIGGERS AND CONTINUED TO GET THE RASHES MORE THAN NOT.

RECENTLY I CUT OUT WHEAT AND IT HAS BEEN TWO WEEKS AND I HAVE NOT GOTTEN A RASH. I WONDER IF I HAVE CELIAC DISEASE OR JUST AN ALLERGY TO WHEAT?

Re: DH as a celiac symptom: from Peter on 2007-02-26

Arlene. I would suggest that you continue to follow a completely gluten-free diet. The longer that you stay rash free, the more likely it is that you have the Dermatitis herpetiformis variant of the celiac condition. Discussion with your dermatologist might confirm this.

Re: DH as a celiac symptom: from Mona on 2007-04-28

My Daughter who is 14 was just diagnosed with DH. Her symptoms are the rash on the knees, shoulders, elbows, bottom and back. Sometimes worse then others. We have been doing tests since July and finally got the Diagnosis.

They recommended the gluten-free diet and we have begun but I am such a worry wart. Will she be OK with this? I worry about her friends and going out to eat. I don't want her to feel left out but as of right now , she is handling this better then I am. ANy suggestions or web sites. I just need others to talk to with a postive attitidue and this blog site really seemed to have this.

Re: DH as a celiac symptom: from Peter on 2007-04-28

Once someone has got themselves organised on a gluten-free diet the worries tend to disappear. There is a steep learning curve to start with, but there are many of us who have lived with this diet for a great many years, and don't give it a second thought.

Although the rash is the obvious symptom of DH, there are many other ways that the gluten can affect your daughter, so you may notice a general improvement in her overall health - fewer colds and minor illnesses for example.

Re: DH as a celiac symptom: from Marie on 2007-05-02

I was diagnosed with gluten intolerance about 18 months ago (IgA test though, was negative), based on abdominal pains, and susequent elimination diet. Now, in the past three months, I have developed angioedema around my mouth. It waxes and wanes, is VERY painful - burning sensation, does not seem to be associated with anything I eat, and each symptoms worsen with each episode. This rash is also refractive to antihistamines, as well as both topical and oral steroids. I am very careful to avoid gluten, however, as you know, this is sometimes difficult to avoid, knowingly, completely. The rash is striclty angioedemitis, and does not blister. My question, then, is, could this be DH? I have been to an allergist, which had no resolve, and virtually negative allergy testing. The angioedema is so painful it is almost intolerable so I am seeking all the information that I can to find a resolve. I would appreciate any input you could offer.

Re: DH as a celiac symptom: from gordon on 2007-06-09

GOOD NEWS !!!! .....there is a new DAPSON GEL available now that works well. I have just started on it and it seems to be working well for DH. It gets dapsone right to the problem area will little systemic damage. It's safe and effective. It's worth a try if you have DH and don't want to keep taking dapsone internally,

Re: DH as a celiac symptom: from Caz on 2008-08-28

Arlene I've had the exact same symptoms as you for a long time now but, about a year ago, they got much much worse red, itchy, swollen eyelids, bad rash round my hairline, on my neck, below my ears (one in particular). I suspected a wheat allergy and went to my GP. He tested me for coeliac (negative) and referred me to the hospital where I was tested for allergies (again negative). Also referred to a dermatologist; he was very unsympathetic, told me my idea of a wheat allergy was rubbish and that I had contact dermatitis and prescribed steriod creams of varying strengths. He also did patch tests on me and I tested positive to cocomidolproply betaine. Finally I was told to resume eating wheat and eliminate c.betaine from my cosmetics. I did both and the rashes returned. I wrote to dermatologist and he told me, again, to stay away from c.betaine but also to eliminate wheat from my diet. If I do that, I am fine. I did a York test a couple of years ago because of bloating (not rashes etc) and it came back positive to wheat, yeast and nuts. After that I restricted my intake of wheat (don't eat a lot of nuts) and yeast but didn't eliminate it fully as there were no rashes. However, I am trying hard to follow a wheat-free diet and, if I do, then I stay rash-free. Every time I have a problem I can trace it back - eventually - to something with wheat in it; even minimal amounts of wheat can cause a problem. I think I am okay with gluten but suspect I have a problem with malt extracts.

It was good to read your post as all the professionals insist that DH occurs on legs, bum etc and because it's on your face, then it's not DH and you can't possibly have a wheat allergy. How stupid can you be ! is their overwhelming reaction. Hope it helps to know you're not alone.

Peter, what are your thoughts ?

Re: DH as a celiac symptom: from Barbara Buntrock on 2008-09-30

Hi, Where can you get the DAPSON GEL? Is it in the USA and FDA approved?

Is it a script from the doc? My drugstore has never heard of it. Sounds great!

Thanks.

Re: DH as a celiac symptom: from sharon stoker on 2009-09-22

I have dianosed myself as dh some years ago without the support of my doctor. The rash has cleared just days after following a gluten free diet and manage to lose some wieght, but what i would like to know is why do i sometimes have a relapse when i eat some of the glutenfree products on sale