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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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- knitty kitty replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease34 Years and very little progress
Welcome to the forum, @maylynn, I had similar symptoms. I was anemic, lost a lot of weight, felt full after three bites. I was deficient in vitamins and minerals, especially Thiamine B1. Thiamine converts our food to energy so our body can function properly. While deficient in thiamine, the appetite can disappear (not enough thiamine to digest... -
- badastronaut replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19Still unsure.....
hmm, I only had a colonoscopy. Would be interesting to have an endoscopy done then I guess. -
- Beverage replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19Still 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.- 1
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- trents replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease34 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 Disease34 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...
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By knitty kitty · Posted
Welcome to the forum, @maylynn, I had similar symptoms. I was anemic, lost a lot of weight, felt full after three bites. I was deficient in vitamins and minerals, especially Thiamine B1. Thiamine converts our food to energy so our body can function properly. While deficient in thiamine, the appetite can disappear (not enough thiamine to digest food) or can become ravenous (the body trying to replete vitamins). I lost a lot of weight. In thiamine insufficiency, the body burns fat and muscle, so weight loss. It takes less thiamine to burn fat and muscle than it takes to burn carbohydrates. Thiamine is needed to make new blood cells. Thiamine is needed by red blood cells to carry oxygen. Thiamine helps with fatigue and anemia. Malabsorption of Celiac Disease affects all eight water soluble B vitamins, vitamin c, and the four fat soluble vitamins. Supplementing while healing after diagnosis is beneficial. Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals. -
By badastronaut · Posted
hmm, I only had a colonoscopy. Would be interesting to have an endoscopy done then I guess. -
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:
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