Does anyone have experience with DH that you'd be willing to share? I think that's what I have even though previous visits with dermatologists have not revealed anything. I will be getting a gluten test through enterolab. What can be used in the short term to provide relief? Thanks.
Gluten Free Forums - Elana's Pantry » celiac
Dermatitis herpetiformis
(7 posts)-
Posted 1 year ago #
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About 4 years ago, I began to notice spots about the size of a nickel or larger of dry, patchy skin that sometimes itched. I went to a number of dermatologists none of which could give me a straight answer. Even my test for celiac disease was negative. I had one doctor tell me that I was just "getting old." and he made me rub vaseline on my skin which made me feel like I smelled like a bicycle chain everywhere I went....!
I began to cut gluten out of my diet and the products that I use at home: shampoo, conditioner, deodorant, makeup, lotions, everything that touched my skin I made sure was gluten free. That is where I started. If I had a breakout I would look for something I was using that had hidden gluten in it. This improved things significantly. I also found a good nutritionist.
Since skin irritations are usually a sign of some immune problem. You may want to find a nutritionist and talk about any other problems you have and solve them all by supplements and diet at once. My nutritionist recently put me on the Flax Borage oil 600mg twice a day specifically to finally get rid of the few spots I still get every now and then.
Good luck, I know how frustrating it can be, especially when you find out all your favorite stuff has gluten in it.Posted 1 year ago # -
I have DH. I would say you must stop eating gluten. About 19 years ago, I was diagnosed with DH by a dermatologist I went to because I had clumps of itchy fluid filled blisters on my elbows mostly. But anywhere I had pressure on my skin - like the tops of my feet from too-tight shoelaces - and on my palms, my knees. Then they dried up, turning red and went away. But when they returned I went to the dermatologist who took a sample of the fluid and said there were gluten antibodies. This doctor told me I had DH and couldn't eat wheat, rye or barley anymore and said there was some kind of study at USC that he hoped I'd go too - where I'd be on a gluten free diet crash course I guess but I couldn't afford to take the time off or go. He prescribed me a medicine called Dapsone which I briefly took then stopped because I did not like how it made me feel (edgy). Apparently it is a drug that can be used to treat leprosy also. I don't like taking any medicine in general, so I stopped taking the Dapsone and completely stopped eating any gluten and that cleared it up but it's been so long I can't remember how long it took for the symptoms to go away. I did not eat very well for a couple of years (no variety) until I started finding some vendors etc. and things are much better today food option wise (thank you Elana!). Looking back I realize I had severe stomach upset on eating things heavy on wheat but people get to thinking what ever their body is doing is normal?
Since then I did travel overseas once eating some gluten inadvertently and had some blisters and weight loss but nothing like what I had before - although at that time when I went to a dermatologist (different doctor) - they did a blood test and said I did NOT have DH - at the time I guess but I think if I went back to a diet with gluten, my symptoms would return - so if you are gluten free you might not be diagnosed with DH --
I'd like to have more clarification on the difference between DH and celiac disease - I would like to know if your intestines are also damaged if you have DH or if it is just a skin issue that is remedied by a gluten free diet. The dermatologist told me that DH is a secondary condition that some people get so I guess I have celiac disease.
I'm also switching over now to include as much raw food cooking in my diet as possible - maybe those extra enzymes will be of benefit overall (how could they not be) I guess.
Good luck!
Posted 1 year ago # -
I had itchy, weepy and cracked skin on my hands off and on for 30 years. I saw many dermatologists and used many products and treatments - natural and prescription - for my eczema. Finally, on a whim, I got tested and found I had gluten and dairy and other food intolerances / allergies.
I cut the offending foods out - and now my hands are perfectly clear. I occasionally have a little break out when I work in the yard - in the dirt.
But clearly the food I was eating was the problem. Also I know I am allergic to nightshades (tomato, potato, peppers and eggplant). They also cause the dermatitis. But since I have cut out the wheat - I can eat some nightshades without problems. Although I still should not eat them. Many doctors over the years told me that of course it was not a food allergy!Posted 8 months ago # -
I HAVE CELIACS AND ALSO DH. THE ONLY TIME DH BOTHERS ME IS IF I HAVE SOME HOW INGESTED GLUTEN. MY GASTRO GUY HAS GIVEN ME A SCRIPT FOR HYDROCORT 1% CREAM. I PUT IT ON MY ELBOWS 2 TIMES A DAY FOR USUALLY 3 DAYS AND IT IS GONE. IF YOU GO ONLINE THERE ARE WEBSITES THAT SHOW WHAT DH LOOKS LIKE. MY DOC SAYS THAT IT GOES HAND IN HAND WITH CELIACS. IF YOU WERE ON A GF DIET BEFORE YOU HAD THE TESTING FOR CELIACS THAN YOU WOULDNT SHOW POSITIVE. YOU MUST BE INGESTING GULTEN FOR AT LEAST A WEEK OR TWO BEFORE TESTING TO GET A TRUE READING ON TEST.
GOOD LUCK,
MAIRBUNNYPosted 8 months ago # -
I, too, have DH as well as Celiac Disease. Due to eating GF, I rarely see breakouts. However, I do see breakouts when I have been really stressed, even though I haven't consumed any gluten. Hydrocortisone is what I use, too. Best of luck to you!
Posted 7 months ago # -
Lucas pawpaw ointment is really good to soothe the sore patches I find when I get a break out, so is coconut oil. I definitely agree with avoiding gluten and changing body products. I use only products on my skin that are made with natural ingredients and I also found that soy gives me problems in body products as well as when eat it - anyone else have issues with soy as well as gluten?
DH is so sore but it will go away I had it for 14 years on both hands and feet and a few months ago it disappeared and has not returned since. It gradually subsided for me and I was left with one patch on the palm of myhand for serveral months it got smaller and smaller and one day it just was gone.little_ducks x
Posted 5 months ago #
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