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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- trents replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11Years of testing - no real answers
Thanks for following up with us on the results. This might be helpful to you now: -
- Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11Years of testing - no real answers
Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost! -
- Scott Adams replied to Tyoung's topic in Related Issues & Disorders2Celiac Disease and Mild Chronic Gastritis
I agree that the gastritis may go away after you've been on a gluten-free diet for a while. If you are concerned, it might make sense for you to do a follow up biopsy after a year or so on a gluten-free diet. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.... -
- Scott Adams replied to Bebee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1
Testing for celiac
Getting tested for celiac disease is a valid concern, especially given your history of microscopic colitis and the potential risks associated with undiagnosed celiac disease, such as cross-contamination, nutrient malabsorption, and increased cancer risk. Since you’ve been gluten-free for years, reintroducing gluten for the standard celiac blood tests or e... -
- Scott Adams replied to ognam's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2
Glutening symptom? oily stool
Steatorrhea (oily or fatty stools) can indeed be a symptom of malabsorption, which is often linked to gluten exposure in individuals with celiac disease. While it’s possible that a single glutening event, like cross-contamination at a restaurant, could trigger temporary steatorrhea, it’s also worth considering whether there’s a more chronic source of glute...
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Posts
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Thanks for following up with us on the results. This might be helpful to you now:
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Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!
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By Scott Adams · Posted
I agree that the gastritis may go away after you've been on a gluten-free diet for a while. If you are concerned, it might make sense for you to do a follow up biopsy after a year or so on a gluten-free diet. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.): -
By Scott Adams · Posted
Getting tested for celiac disease is a valid concern, especially given your history of microscopic colitis and the potential risks associated with undiagnosed celiac disease, such as cross-contamination, nutrient malabsorption, and increased cancer risk. Since you’ve been gluten-free for years, reintroducing gluten for the standard celiac blood tests or endoscopy would be challenging, as it requires consuming gluten for several weeks to months, which could worsen your symptoms and disrupt your daily life. Gene testing (HLA-DQ2 and HLA-DQ8) through a lab like EnteroLab could be a helpful first step. While these genes are present in nearly all celiac patients, having them doesn’t confirm celiac disease—it only indicates genetic susceptibility. If you don’t have these genes, celiac disease is highly unlikely, which could provide some peace of mind. However, if you do have the genes, it doesn’t confirm celiac disease but suggests further testing might be warranted if you’re willing to undergo a gluten challenge. Another option is to discuss with your doctor whether a follow-up endoscopy or other non-invasive tests (like stool tests for gluten antibodies) could provide insights without requiring a gluten challenge. While a formal celiac diagnosis can be important for ensuring strict dietary adherence, access to gluten-free options in hospitals, and monitoring for complications, it’s also worth weighing the risks and benefits of reintroducing gluten. If you’re already strictly gluten-free and managing your symptoms well, the urgency of a formal diagnosis may depend on your personal health goals and concerns. Consulting a gastroenterologist familiar with celiac disease and Microscopic Colitis can help guide your decision. -
By Scott Adams · Posted
Steatorrhea (oily or fatty stools) can indeed be a symptom of malabsorption, which is often linked to gluten exposure in individuals with celiac disease. While it’s possible that a single glutening event, like cross-contamination at a restaurant, could trigger temporary steatorrhea, it’s also worth considering whether there’s a more chronic source of gluten exposure, such as in medications or ongoing dietary mistakes. Since you’ve been less careful recently and experienced this symptom after eating out, it’s plausible that the fries or other cross-contaminated foods could be the culprit. However, if the steatorrhea persists, it might indicate ongoing gluten exposure or another underlying issue, such as pancreatic insufficiency or bile acid malabsorption. Until you can see a GI doctor, it might help to strictly avoid any potential sources of gluten, including cross-contamination, and monitor your symptoms. If the issue continues, it’s important to investigate further, as persistent steatorrhea can lead to nutrient deficiencies. In the meantime, keeping a detailed food and symptom diary could help identify patterns or triggers. Good luck finding a new GI doctor—hopefully, they can provide clarity soon!
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