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Post Diagnosis, Recovery & Treatment of Celiac Disease
Discussions related to the recovery process after you've been diagnosed.
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Recent Activity
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- Sarah Grace replied to Sarah Grace's topic in Related Issues & Disorders7Sarah Grace
Many thanks to everyone for the advice received and especially to Knitty Kitty. I have ordered a one month supply of Benfotiamine and very much look forward to trying it. The expression "I felt like I was dying" really resonates with me. I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in... -
- glucel replied to Sarah Grace's topic in Related Issues & Disorders7Sarah Grace
OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that... -
- glucel replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease4
abnormal weight loss
Thanks @knitty kitty, I read your v b info with much interest for last few months. Here is my weight per event: sept 8, 2022- 181 lbs june 1, 2024 gluten free july 4- 143.5 lbs july31- changed from regular b to methyl folate and b12. oct 8- 150 lbs So weight hopefully coming back albeit very slowly. So probably my villi... -
- knitty kitty replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease4abnormal weight loss
Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency. Our bodies use more Thiamine when we are ill and stressed. Switching to a gluten free diet can also result in a lower intake of Thiamine. Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm... -
- knitty kitty replied to Neat1's topic in Introduce Yourself / Share Stuff7
Maybe celiac, maybe just ncgs?
Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too. Celiac Disease is genetic. If you've got celiac disease genes, further testing is warranted. Some people have Celiac genes, but don't have active Celiac Disease. If you've got symptoms, your genes are probably...
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By Sarah Grace · Posted
Many thanks to everyone for the advice received and especially to Knitty Kitty. I have ordered a one month supply of Benfotiamine and very much look forward to trying it. The expression "I felt like I was dying" really resonates with me. I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post. Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present! I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂 -
OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.
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Thanks @knitty kitty, I read your v b info with much interest for last few months. Here is my weight per event: sept 8, 2022- 181 lbs june 1, 2024 gluten free july 4- 143.5 lbs july31- changed from regular b to methyl folate and b12. oct 8- 150 lbs So weight hopefully coming back albeit very slowly. So probably my villi may be healing and methyl helping although also eating potato chips every few days so that is probably helping too. Taking 100 mg of b1 along with complex. I took all thiamine maybe 100 or so tablets. Brain fog diminished some and it seems swallowing trouble also diminished. Stopped taking it couple months or so ago and did not notice any reversals. I think I will finally look into bentofothiamine. Also eat 1/2 ounce liver every morning for additional v b support.
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By knitty kitty · Posted
Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency. Our bodies use more Thiamine when we are ill and stressed. Switching to a gluten free diet can also result in a lower intake of Thiamine. Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet. They went back to eating a gluten containing diet. We don't get that option. Gluten free processed foods are not enriched with vitamins like gluten containing counterparts. Supplementing helps boost your absorption of essential vitamins and minerals. -
By knitty kitty · Posted
Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too. Celiac Disease is genetic. If you've got celiac disease genes, further testing is warranted. Some people have Celiac genes, but don't have active Celiac Disease. If you've got symptoms, your genes are probably activated. Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests. Some people with Celiac Disease are seronegative. Thiamine deficiency can cause constipation and gastrointestinal symptoms. Magnesium supplementation can help with that, too. Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
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