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- knitty kitty replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms12Confused About Results
@Ginger38, Have you been checked for nutritional deficiencies, besides iron? Celiac disease causes inflammation which results in nutritional deficiencies. Iron needs Thiamine and the other B vitamins to make new red blood cells. Iodine and thiamine deficiencies affect the thyroid. The thyroid is one organ that uses lots of thiamine.... -
- Ginger38 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms12Confused About Results
Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise. I have started having palpitations and chest pain, both of which seem to be... -
- knitty kitty replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms23
Waiting 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.
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By knitty kitty · Posted
@Ginger38, Have you been checked for nutritional deficiencies, besides iron? Celiac disease causes inflammation which results in nutritional deficiencies. Iron needs Thiamine and the other B vitamins to make new red blood cells. Iodine and thiamine deficiencies affect the thyroid. The thyroid is one organ that uses lots of thiamine. Vitamin D deficiency leads to hormonal problems, including menstrual problems. Vitamin D needs Thiamine to activate it. Heart palpitations and chest pain after gluten exposure can be evidence of poor digestion and a drop in available thiamine. Consumption of any foods high in carbohydrates can cause a drop in thiamine. This is called high calorie malnutrition. Anxiety, numbness, tingling, acne, and brain fog are symptoms of Thiamine and the other B vitamin deficiencies. There's eight B vitamins that all work together in concert. They are water soluble. They can be hard to absorb by inflamed intestines. Vitamin A can improve acne. I suffered from all the same symptoms which only resolved with B Complex and Thiamine (in the forms TTFD and Benfotiamine) supplements, Vitamins D, A and C. Magnesium, Thiamine and B6 Pyridoxine will get rid of the nightmares. Replenishing your vitamin and mineral stores will help heal and feel better faster. Talk to your nutritionist and doctor about supplementing. Think about adopting the Autoimmune Protocol diet to help with SIBO and MCAS to reduce bloating and heal the intestines. @Alibu and I were just discussing diagnosis without obvious villus damage here. This study followed people who showed no or little villi damage at first....they accrued more damage over time. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/ -
Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise. I have started having palpitations and chest pain, both of which seem to be attributed to exposure to gluten. I’ve also been having a lot of nightmares, anxiety, numbness and tingling, brain fog, spotting between cycles and acne. Idk if all those are relatable to gluten / celiac but I’m concerned I’ve finally tipped my body/ immune system into a bad place. Is there anyway to detox and heal faster or treat these symptoms if related to gluten ?
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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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