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- Beverage replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms18Still unsure.....
You said the colonoscopy showed no damage. Did you also have an endoscopy? The upper colon is where celiac damage would be detected via endoscopy, not the colon. -
- trents replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease24 Years and very little progress
Welcome to the forum @maylynn! Have you had a follow-up endoscopy/biopsy of the small bowel to check for healing of the villous lining? If not, it's about time one was done. As Scott mentioned, I also wonder if you have food intolerances in addition to gluten. Oats (even gluten free oats), dairy, soy, corn and eggs are some of the most common ones in... -
- Scott Adams replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease24 Years and very little progress
Is your gluten-free diet strict? Do you eat out in restaurants? If so, you could be getting contamination, and over time that can slow recovery. You may want to get a follow up celiac disease antibody panel done to make sure that your levels have gone down since your last tests. Also, have you had various nutrient levels checked via a blood test, and... -
- maylynn posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease24 Years and very little progress
Hello! I am here as a last result, hoping for some advice, similar stories, etc. When I was 17, I was diagnosed with Celiac disease. By the time we figured it out my iron levels were so low I had to get infusions, and I had lost 20lbs. in two weeks going from a 5'11 130lbs woman to a 110 lbs. Now, I am 21 and have gained 4 lbs since. Every time I eat... -
- Bronwyn W replied to Bronwyn W's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Symptom treatment of gluten exposure with Anti-inflammatories
Thank you so much, Scott. I find it incredibly daunting navigating this celiac space and I find comfort in your wealth of knowledge. Thank you 🙏🏻- 1
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You said the colonoscopy showed no damage. Did you also have an endoscopy? The upper colon is where celiac damage would be detected via endoscopy, not the colon.
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Welcome to the forum @maylynn! Have you had a follow-up endoscopy/biopsy of the small bowel to check for healing of the villous lining? If not, it's about time one was done. As Scott mentioned, I also wonder if you have food intolerances in addition to gluten. Oats (even gluten free oats), dairy, soy, corn and eggs are some of the most common ones in the celiac community.
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By Scott Adams · Posted
Is your gluten-free diet strict? Do you eat out in restaurants? If so, you could be getting contamination, and over time that can slow recovery. You may want to get a follow up celiac disease antibody panel done to make sure that your levels have gone down since your last tests. Also, have you had various nutrient levels checked via a blood test, and have you been taking vitamin & mineral supplements since your diagnosis? The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Do you still have celiac disease symptoms? Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: -
Hello! I am here as a last result, hoping for some advice, similar stories, etc. When I was 17, I was diagnosed with Celiac disease. By the time we figured it out my iron levels were so low I had to get infusions, and I had lost 20lbs. in two weeks going from a 5'11 130lbs woman to a 110 lbs. Now, I am 21 and have gained 4 lbs since. Every time I eat a meal, I get three bites in and feel so full that I feel sick. I can't eat a full meal. Something else has to be wrong right? This can't just be more "normal" right? I have done test after test and no doctor in my area can figure anything else out. They have told me I most likely have shrunken my stomach by now with how little I am eating so that has to do with some of the sick feeling. What have you done to gain the weight back? Foods? Workouts?
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Thank you so much, Scott. I find it incredibly daunting navigating this celiac space and I find comfort in your wealth of knowledge. Thank you 🙏🏻
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