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- Jacki Espo replied to Pamp8's topic in Dermatitis Herpetiformis2Dermatitis Herpetiformis
Hi there @Pamp8 yes I've had dermatitis herpetiformis and a negative test for celiac and a negative biopsy. I had stopped eating gluten before taking the test. I have had an inconclusive genetic (?) test. I developed the same all body rash. It was one of the worst experiences of my life and I am sorry you're experiencing it. What helped me: 1). I stopped... -
- trents replied to Pamp8's topic in Dermatitis Herpetiformis2Dermatitis Herpetiformis
Welcome to the forum, @Pamp8! As to your first question, it is possible to have only the epidermal form of celiac disease but it is not common. Most people who have dermatitis herpetiformis also have damage being done to the villous lining of the small bowel. As to your second question, most likely you are getting some gluten contamination from... -
- Pamp8 posted a topic in Dermatitis Herpetiformis2Dermatitis Herpetiformis
I'm new here, although in the past I know I've read some of the messages. My doctor and I have long suspected that I have celiac. I have several other autoimmune illnesses. But, my celiac biopsy was negative, so I started eating a lot more gluten. Over the last several years, I've had minor bouts of an extremely itchy rash that I was correlating to gluten... -
- leenora replied to MagsM's topic in Related Issues & Disorders7Inflammation and Menier’s disease link?
P.S. I also suffer from Meniere's and Hashimoto's thyroid disease, osteopenia since 40 y.o. These all were diagnosed before the Celiac Disease! And I believe it is all interconnected. -
- leenora replied to MagsM's topic in Related Issues & Disorders7
Inflammation and Menier’s disease link?
Hi Mags, I was diagnosed almost 4 years ago at 57y.o, also of Irish heritage, my mom's from Co. Galway. Have your doctors run an immune globulin panel. My IgA was undetectable & that is what the usual bloodwork for celiac relies on. For example, my tTG IgA was below 2 & deamidated Gliadin IgA was 5, both in normal range. In other words, you do not...
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By Jacki Espo · Posted
Hi there @Pamp8 yes I've had dermatitis herpetiformis and a negative test for celiac and a negative biopsy. I had stopped eating gluten before taking the test. I have had an inconclusive genetic (?) test. I developed the same all body rash. It was one of the worst experiences of my life and I am sorry you're experiencing it. What helped me: 1). I stopped eating oats of any kind. 2). I also took some anti-biotics that were not prescribed for dermatitis herpetiformis but I read they could help. 3). Salty food exacerbates it for me. Now I have a small flare up any time I get cross contamination like from french fries or a shared grill at a restaurant but it's not as bad as it used to be. Wishing you relief soon. -
Welcome to the forum, @Pamp8! As to your first question, it is possible to have only the epidermal form of celiac disease but it is not common. Most people who have dermatitis herpetiformis also have damage being done to the villous lining of the small bowel. As to your second question, most likely you are getting some gluten contamination from an unknown source on occasion that you are unaware of and are not suspecting. It could be something like in a medication or supplement you are taking or an oral hygiene product you are using or a spice you are using in your cooking. You might also look into a low iodine diet as iodine is known to exacerbate dermatitis herpetiformis. As to your third question, many who suffer from dermatitis herpetiformis find it is a stubborn problem and difficult to completely control.
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I'm new here, although in the past I know I've read some of the messages. My doctor and I have long suspected that I have celiac. I have several other autoimmune illnesses. But, my celiac biopsy was negative, so I started eating a lot more gluten. Over the last several years, I've had minor bouts of an extremely itchy rash that I was correlating to gluten, but it wasn't very bad and would improve in a short amount of time. Last year, I had a bout that was a bit worse, but it went away rather quickly, so I didn't think too much about it. Fast forward to this year. I have had a REALLY BAD case of it, for a few months, so I went to a dermatologist, and she diagnosed dermatitis herpetiformis without a biopsy. It was pretty obvious to her that it is dermatitis herpetiformis, but she said that if I wanted her to, she would do a biopsy. She said that I have just become more sensitized over time. She prescripbed Dapsone gel, which helps a lot, but I run out of it long before I'm eligible for a refill. So, I am going CRAZY. It is on my arms, legs trunk, everywhere, and it itches like chiggers. If I get even the slightest bit sweaty, it is so unbearable. I've been 100% gluten free since April, but it keeps flaring up. (I've been under intense stress, too.) My questions are: 1.) Do many people have celiac without a positive celiac biopsy? 2.) How long will the dermatitis herpetiformis persist, even though I'm 100% gluten free? 3.) Is my story a common one? Thanks so much!
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P.S. I also suffer from Meniere's and Hashimoto's thyroid disease, osteopenia since 40 y.o. These all were diagnosed before the Celiac Disease! And I believe it is all interconnected.
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Hi Mags, I was diagnosed almost 4 years ago at 57y.o, also of Irish heritage, my mom's from Co. Galway. Have your doctors run an immune globulin panel. My IgA was undetectable & that is what the usual bloodwork for celiac relies on. For example, my tTG IgA was below 2 & deamidated Gliadin IgA was 5, both in normal range. In other words, you do not have celiac. I HAD TO ASK THE DOCTOR TO RETEST ME using IgG versions of both tests! When he did tTG IgG = >100 ( range 0-5) & the deamidated gliadin IgG = 219 (range 0-19). I also had 2 copies of the gene on 23&me. It is sad that you have to tell the doctors what to test for, but you have to do your research & be your own advocate. And this was a gastroenterologist! Celiac is not very common where I live, so I guess it is not on their radar. Also before the second set of bloodwork I ate as much gluten as possible for 6 weeks. I wanted the tests to be definitive. it was torture & my husband said "Stop doing this to yourself!" But I needed to know. when the GI did a biopsy,my small intestine was almost completely smooth. So very definitely Celiac Disease. Best of Luck with your testing & diagnosis. It is better to know & be able to regain your health. I struggled for 17 years to find out what was wrong.
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