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Recent Activity
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- Scott Adams replied to Nimsay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Confused about gluten challenge symptoms
Your experience with gluten is actually not unheard of! Some people with non-celiac gluten sensitivity (NCGS) or even celiac disease report an initial ‘honeymoon phase’ during a gluten challenge, where symptoms temporarily improve before worsening again. This could be due to your body adjusting or even a temporary immune modulation. Since you’re only 2.5 w... -
- 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...- 1
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- 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.
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By Scott Adams · Posted
Your experience with gluten is actually not unheard of! Some people with non-celiac gluten sensitivity (NCGS) or even celiac disease report an initial ‘honeymoon phase’ during a gluten challenge, where symptoms temporarily improve before worsening again. This could be due to your body adjusting or even a temporary immune modulation. Since you’re only 2.5 weeks into the challenge, it’s possible more symptoms could reappear if you continue. Celiac testing (bloodwork and endoscopy) is most accurate after a full 6 weeks of gluten, so sticking with it for now is wise. That said, your joint/tendon issues (especially the Achilles stiffness) are interesting—they can be linked to celiac disease or other autoimmune conditions (like rheumatoid arthritis or even reactive arthritis). Have you been tested for celiac antibodies yet? If not, that’s the next step. If the tests come back negative, NCGS or another immune-related issue (like FODMAP intolerance or mast cell activation) might still be at play. It’s also worth noting that recurrent miscarriage and elevated liver enzymes can be linked to celiac (it’s often underdiagnosed in women with ‘atypical’ symptoms like yours). But if celiac is ruled out, a rheumatologist or a gastroenterologist who specializes in immune-related GI issues might help explore other possibilities (like Hashimoto’s, Sjögren’s, or connective tissue disorders). Hang in there—it’s frustrating not to have clear answers, but you’re doing all the right things by paying attention to your body and pushing for testing. Keep us posted on how the rest of your gluten challenge goes! -
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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