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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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- Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Coeliac UK Research Conference 2025
There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease. https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t -
- Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders5Basic metabolic panel results - more flags
Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources. I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all. -
- KelleyJo commented on Scott Adams's article in Latest Research4Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)
When I was diagnosed in 2016, I was told I had probably had it at least 30 years. I also have lactose intolerance and IBS, so I'm not certain which symptoms were which in the early stages. I have osteopenia because of it. I have issues with inflammation. I was only diagnosed with the IGA blood test. But there was such a marked difference when I went very...- 1
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- knitty kitty replied to Jmartes71's topic in Related Issues & Disorders12My only proof
You're right, doctors usually only test Vitamin D and B12. Both are really important, but they're not good indicators of deficiencies in the other B vitamins. Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer. The other B vitamins can only be stored for much shorter periods of time. Pyridoxine B 6 can...
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There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease. https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
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By Rejoicephd · Posted
Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources. I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all. -
By knitty kitty · Posted
You're right, doctors usually only test Vitamin D and B12. Both are really important, but they're not good indicators of deficiencies in the other B vitamins. Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer. The other B vitamins can only be stored for much shorter periods of time. Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest. Thiamine stores can be depleted in as little as three days. There's no correlation between B12 levels and the other B vitamins' levels. Blood tests can't measure the amount of vitamins stored inside cells where they are used. There's disagreement as to what optimal vitamin levels are. The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people. Folate requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products. Vitamin D requirements have been updated only in the past few years. Doctors aren't required to take as many hours of nutritional education as in the past. They're educated in learning institutions funded by pharmaceutical corporations. Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins. Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself. Her book The Paleo Approach has been most helpful to me. You're very welcome. I'm glad I can help you around some stumbling blocks while on this journey. Keep me posted on your progress! Best wishes! P.S. interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ -
So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron. I wondered how it was possible that I had celiac disease without being deficient in everything! I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc. It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
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By knitty kitty · Posted
Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance.
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