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Anyone have this type of outcome?

jkjoller

By jkjoller
in Dermatitis Herpetiformis

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jkjoller Newbie
jkjoller
Posted

Hello All-

I'm 50 years old and have never had any issues with gluten. About a year ago I developed an itchy rash (after a very stressful time), which after months of tests by my Dermatologist, turned out to be Dermatitis Herpetiformis (or DH as its called in the community). Dermatologist sent me to my family doctor. She did blood tests (Gliadin IgG, Gliadin IgA, TTG IgG, TTG IgA) and they came back negative. She told me to go gluten free. I wanted more info so I went to see a "gluten specialist/gastroenterologist (After several months of eating gluten free).

He did the blood tests again which came back negative. FYI, I ate gluten like crazy for about 6 weeks prior to test. He did a genetic test that showed I do have a marker for it. He also performed an endoscopy and colonoscopy. Samples and procedure showed healthy interior. So basically, he said I'm a rare case that has a gluten intolerance (the DH rash) but no other symptoms. I've been eating gluten free for around 8 months now and I honestly don't feel any different (or any better). Rash is not as bad but still pops up on occasion. I'm actually more amazed that I don't feel different. Most people I talk to or read about state they lost weight and felt 100% better after quitting gluten. Not me. But then again, I really didn't feel bad in the first place. I guess I was expecting something dramatic after cutting out gluten.

- jeff

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kareng Grand Master
kareng
Posted

Here is some info for you and your doctor - 

 

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What is dermatitis herpetiformis (DH)?

Dermatitis herpetiformis (DH) is an itchy, blistering skin condition that’s a form of celiac disease. The rash usually occurs on the elbows, knees and/or buttocks, and is characterized by its bilateral nature; both knees (and/or both arms) are affected, seldom just one. Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease.

Unless otherwise specified, the information pertaining to celiac disease also pertains to people with DH. In addition to following a strict gluten free diet, DH is also commonly treated with a medication called Dapsone.

jkjoller Newbie
jkjoller
Posted
  • Author

Thanks!

  • 2 months later...
Smithbrother Newbie
Smithbrother
Posted

I have had DH for for 15 years and it still bothers me even on a gluten free diet. I too had a lower GI that showed nothing even though i had lost 40 pounds and everything seemed to go through me. The dermatologist did a skin biopsy on one of the lesions and confirmed the celiac disease  marker.  

squirmingitch Veteran
squirmingitch
Posted

A dx of dh is a dx of celiac.

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It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive.

It can take time for the rash to get out from under your skin, sometimes years. 

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Iodine aggravates the rash.

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    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

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      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
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      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
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