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Sam81

Celiac Dh Rash

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Hi there,

Can anyone tell me what the celiac DH rash looks like?? I have seen so many variety's on the net. Can it vary so much? My rash starts off looking like a mass of red (if really bad) or just red spots if not so bad then changes and looks a bit like the pictures you see of magnified red blood cells, red ish raised oval with white centre also resembling large ulcerations I get in the mouth. The rash appears on bum and legs, itches intensely to the point where i draw blood. On my face it's just purple "marks"/spots that take months to heal. Are either of these celiac or bechets like?? (i so say have bechets but rash is not connected apparently). The rash is nearly in full swing so I was contemplating taking some pictures and posting them?? Any comments welcomed...

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Ok, having googled skin conditions the oval things on legs look awfully like hives - allergy to food?? Rash on bum and face is different though, purple and painful on face, cant describe bottom one... just itches like mad... So maybe i'm not celiac - just allergic to some foods??

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Well my rash was raised and had almost boils like. Was very hot to the touch hotter than the other areas that were not affected. It was the itchiest thing in the world and did not respond to anything I put on it.. the best thing was just a cool wet cloth that I put ice cubes in it. I had it on the small of my back that went all the way down my buttocks. One doctor who looked at it thought it was fungal, another thought it was massive hives... only post gluten sensitivity/possible celiac have we determined that it was DH rash. Mine also finally resolved after about 2 weeks and faded, only to reappear in the same exact spot!

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The appearance can vary widely from person to person and over time. My rash moved around to different places on my body and looked different each time, I never dreamed it was all the same rash. I used to get pinpoint tiny blisters that itched and broke and healed in a couple of days...they were on my hands and between my fingers after I baked bread. Years later I got a large circular lesion on my calf that itched like mad had raised edges that were swollen like hives and pinpoint bumps in the middle and stayed for a year. Off and on I would get an unhealing painful ulcer inside my nose. Then I got mosquito bite like bumps on my forearms and feet...they itched, broke, burned, oozed, weeped, tried to heal, then blistered all over again. Years later I got the lesions on my face. These were like an impetigo looking rash, in fact I was treated for impetigo multiple times, fungus, acne, all to no avail. Only when I went gluten free on my own suspicion it was DH did I realize this is what I actually have. They reacted violently to gluten and iodine. Once eliminated and reintroduced the reactions were severe. I too would have outbreaks in the same spots over and over. One on my lower back. Very mild ones on my elbows. Mine never looked like the ones on the internet...or I might have figured this out long ago. Some sites call it watery blisters over the joint areas, but, in fact, DH can appear on any part of the body, and it can range from mild to severe. I encourage you to post your pictures if you like. I would post mine but mostly only have scars to show for it. During the rash outbreaks I was so baffled by the maddening burning itchy pain that I just didn't think of taking pictures. I wish I had. If only I had known those multiple different rashes in different places were just more of the gluten rash manifesting. This site that has the most information about DH on the internet and I think we should have a photo archive so more people can use it to identify their gluten rashes. It would have been so helpful to me. Especially when most articles about DH say that it rarely occurs on the face. If you post your pictures you will get feedback from others. Some have posted pictures in the past and gotten responses from others who had similar looking rashes. Words can only do so much...but a picture is a thousand words. Especially when Dr.'s do not even know how to identify it. It might be helpful to them too. I know my Dr. and several others are now looking to this site for information about Celiac/Gluten Intolerance and DH. So we can use it to educate others and save them from the years of burning itching pain we had to go through. I think every rash that is unresponsive to treatment should be tested for DH either by biopsy or by a long term gluten elimination. If it heals, it was DH...the problem is it can take up to 2 years being gluten free for the rash to completely heal and for flares to stop happening.However, in my experience the burning and itching stopped in a few months and when I did have flares it was way less intense the longer I was gluten free.

Sorry I ran on about this....but I want people to know...

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I don't think there's one "look" to it. Have you had bloodwork done to suggest Hashimotos, other thyroid problems, celiac, etc? If any of those are positive I'd definitely suggest a biopsy. Or, if your dermatologist will biopsy now, DO IT.

Then stop eating gluten and see what happens.

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I have had blood tests - all negative although Dr refuses to let me have access to celiac ones, he's given me a piece of paper with the word negative on but not the actual levels (see my other post "desperately seeking advice" for more details). I will post pictures over the next two days, although feel incredibly embarassed regarding rash on buttocks, have drawn blood tonight where I am in that much of a state with it. Been treated for impetigo many times on face and often get mouth and throat ulcers. Will look forward to comments and will be ringing dermatologist in advance to request the biopsy when I see them in 3 weeks. It's very frustrating, so any thing I can do that might help future people is worth it - even if it's ruling out rather than in...

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You can still have Celiac DH even if you tested negative. The tests are not 100% accurate. Many people find that when they go gluten free their symptoms disappear. If you really do have DH it would be a shame to believe the negative tests...they might be wrong. What you are left with then is to try the gluten free diet if you still suspect DH. It may take a while to clear up...months...and you must be diligent to keep antibodies from reacting to trace gluten or iodine. You don't have to post any pictures you don't feel comfortable posting. You have a RIGHT to your test results in the form that they come from the lab. You should insist on it...and/or get a second opinion from another dermatologist. Don't tell them anything about the first ones results if you want a true second opinion. See if you can get biopsied again for DH. Who knows? Maybe since they are really activated you might test positive. I just wanted you to know that DH often tests negative and yet the only way to get rid of it is to be strictly gluten free. I know it is miserable. I hope you find out soon.

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I have pictures but am unsure how to load them?..

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Incase anyone is interested I am posting pictures of the 3 different rashes I experience in the Dermatitis herpetiformis topic... I would welcome any opinions or comments. This rash is beginning to affect my life quite seriously and besides being a horrible and uncomfortable thing it has also made me lose a lot of confidence.

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