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canutillomom

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canutillomom Newbie

Hi, after being dx'd with IBS and suffering from a "mystery rash" for years (3+ years) I was just told that I have dh. My biopsy for dh actually came back negative, but my gastro had just gone to some sort of conference on celiac and she told me that my rash is a prime example of dh. Both lower legs, both arms, my rearend and my stomach are all affected. She had me start the gluten-free diet and told me that it will take months for it to heal because I've had it over such a large area for so long.

I've been reading threads here and just want to cry. I'm so happy to finally know what is going on, but so sad that it takes so long to find out what is going on.

I'm glad to know that I'm not alone eventhough this is something I wouldn't wish on my worst enemy.


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AllergyComfort Newbie

I am so glad you found out what was causing your rash. I am interested, what exactly did/does your rash look like? Did you also have gastric problems? I have thought about wheat being a cause, but haven't seen any pictures of the rash involved.

I have been so frustrated, figuring out what's wrong with me. I have had a rash over most of my body for 10 years. The skin is very damaged, it never completely heals.

Good Luck and thanks for you help.

Hi, after being dx'd with IBS and suffering from a "mystery rash" for years (3+ years) I was just told that I have dh. My biopsy for dh actually came back negative, but my gastro had just gone to some sort of conference on celiac and she told me that my rash is a prime example of dh. Both lower legs, both arms, my rearend and my stomach are all affected. She had me start the gluten-free diet and told me that it will take months for it to heal because I've had it over such a large area for so long.

I've been reading threads here and just want to cry. I'm so happy to finally know what is going on, but so sad that it takes so long to find out what is going on.

I'm glad to know that I'm not alone eventhough this is something I wouldn't wish on my worst enemy.

canutillomom Newbie

I am so glad you found out what was causing your rash. I am interested, what exactly did/does your rash look like? Did you also have gastric problems? I have thought about wheat being a cause, but haven't seen any pictures of the rash involved.

I have been so frustrated, figuring out what's wrong with me. I have had a rash over most of my body for 10 years. The skin is very damaged, it never completely heals.

Good Luck and thanks for you help.

Hi, yes- I have a lot of gastric problems- very bad GERD and what they kept saying was IBS (I was always constipated or having horrible bouts of diarrhea), and my middle would bloat so badly that my husband said I looked about 11 months pregnant!

My rash starts looking like pimples or similar, then ruptures and scab over. They leave purple scars. I have one patch on a leg where the rash started where my skin is very thick and pink. My lower legs, inner thighs, stomach, rear and inner arms (from armpit to wrist) are all affected. It itches all the way to the bone and then it burns like someone poured acid on me. Whenever I have a fresh breakout on my rear I can't sit down for awhile and can't sit on anything hard for a day or so.

There are some pictures of the rash on this site and you can google it for images.

Good luck!

AllergyComfort Newbie

Hi,Sounds horrible.

I'm not sure I have the same thing. The rash sounds very similar, but I really don't have the digestion problems. I'll have to look for those pictures.

Thanks and good luck to you also!

Glamour Explorer

Your rash sounds like mine, locations, intensity, etc.

I have been gluten-free for about 4 months. My rash seems to have stopped improving. But I was insanely itching 24 hours a day. Now, I get a few hours of relief sometimes. Steroid creams become a cycle of up and down.

The learning curve on the diet is pretty steep at first, because of hidden gluten. But I am getting pretty good at it. I have been contaminated by eating out.

I recently switched to gluten-free shampoo, and this is helping. I am still not clear about body lotions. I am trying regular lubriderm right now. I double rinse all laundry, no perfumes, etc.

I think the skin gets super reactive with other conditions when one has DH for some time. I have had the rash for 3 years.

I have now lost about 20 pounds from going gluten-free. I am eliminating almost all prepared foods and vegetable juicing. I have also backed off of vitamins and supplements, until I am clear on side effects.

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    • trents
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    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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