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Parents, Friends and Loved Ones of Celiacs
Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.
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Recent Activity
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- knitty kitty replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms23Waiting on biopsy after positive bloodwork, but also not really believing this is real
@Alibu, Start with this study... High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial https://pubmed.ncbi.nlm.nih.gov/23715873/ "Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin,... -
- Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms23Waiting on biopsy after positive bloodwork, but also not really believing this is real
@knitty kitty I see, thank you!! Yes, basically the biopsy just said "normal villous architecture." It didn't give any kind of Marsh score at all, but it sounds like it would be a 0 based on the biopsy report, which is why he's saying it's Latent or Potential celiac. It's just weird because I know in Europe if I was a child, they wouldn't even do the biopsy...- 1
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- trents replied to Hummer01's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Diagnosis confusion
That is one issue but the bigger issue may be the human tendency to rationalize it all away without an official diagnosis such that you keep falling off the gluten free bandwagon. But there is the option of going for the gluten challenge in a more robust way and getting retested. -
- Scott Adams replied to sheba's topic in Gluten-Free Foods, Products, Shopping & Medications1foods
Welcome to the forum! Do you mean that you eat food from fryers that also cook gluten items, and you don't have serious issues? If so, the problem with this approach is that, depending on how often you do this, you could be causing villi damage if you have celiac disease (you haven't mentioned whether or not you have celiac disease), which can lead... -
- Hummer01 replied to Hummer01's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Diagnosis confusion
Oh yes, I figured 50g of bread would contain way less than that in gluten. I just meant to say that I tried to make my 2 daily slices count instead of 2 tiny Wonder bread slices haha. Thanks for the insight trents, I appreciate someone validating that what I'm going through isn't all in my head or something! This process has been so frustrating and...
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By knitty kitty · Posted
@Alibu, Start with this study... High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial https://pubmed.ncbi.nlm.nih.gov/23715873/ "Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin, and improve glucose tolerance in patients with hyperglycemia. High-dose thiamine supplementation may prevent or slow the progression of hyperglycemia toward diabetes mellitus in individuals with impaired glucose regulation." They used 100 mg of thiamine three times a day. They don't say which kind of thiamine was used. Benfotiamine is my recommendation because it has been shown to promote intestinal health and helps with leaky gut and SIBO. Thiamine forms including Benfotiamine and TTFD are safe and nontoxic even in higher doses. The old "gold standard" diagnosis is changing. It must be confusing for doctors as well. I went through all this myself, so I understand the frustration of the vagueness, but set your course and watch as your health improves. Keep us posted on your progress! P.S. here's another link.... https://pubmed.ncbi.nlm.nih.gov/39642136/ -
@knitty kitty I see, thank you!! Yes, basically the biopsy just said "normal villous architecture." It didn't give any kind of Marsh score at all, but it sounds like it would be a 0 based on the biopsy report, which is why he's saying it's Latent or Potential celiac. It's just weird because I know in Europe if I was a child, they wouldn't even do the biopsy, so how does this system make any sense?? I have had an A1c and it's normal. I do know that I have insulin resistance, however, so there's that. Wow, thank you for all this information!!! I have a lot of reading to do!
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That is one issue but the bigger issue may be the human tendency to rationalize it all away without an official diagnosis such that you keep falling off the gluten free bandwagon. But there is the option of going for the gluten challenge in a more robust way and getting retested.
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By Scott Adams · Posted
Welcome to the forum! Do you mean that you eat food from fryers that also cook gluten items, and you don't have serious issues? If so, the problem with this approach is that, depending on how often you do this, you could be causing villi damage if you have celiac disease (you haven't mentioned whether or not you have celiac disease), which can lead to more serious issues later. -
Oh yes, I figured 50g of bread would contain way less than that in gluten. I just meant to say that I tried to make my 2 daily slices count instead of 2 tiny Wonder bread slices haha. Thanks for the insight trents, I appreciate someone validating that what I'm going through isn't all in my head or something! This process has been so frustrating and confusing. I guess the only thing about not getting the "official" diagnosis is not knowing how strict to be with CC (in my early 20s trying to think about the long term effects) but I hope starting the diet will bring some relief either way. Thanks again.
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