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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 Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease24Pain in the right side of abdomen
It's important to correct the B12 deficiency first, replenishing the stores of B12 in the body within organs and tissues. As more B12 becomes available, the body will adjust how much folate to absorb from the diet. Dietary folate sources include leafy greens, broccoli, and Brussels sprouts, and liver. (Avoid spinach due to high oxalates and risk... -
- Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease24Pain in the right side of abdomen
Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated.... -
- Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease24Pain in the right side of abdomen
Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level -
- Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease24
Pain in the right side of abdomen
Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weeke... -
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By knitty kitty · Posted
It's important to correct the B12 deficiency first, replenishing the stores of B12 in the body within organs and tissues. As more B12 becomes available, the body will adjust how much folate to absorb from the diet. Dietary folate sources include leafy greens, broccoli, and Brussels sprouts, and liver. (Avoid spinach due to high oxalates and risk of kidney stone formation.). Folate level should be checked in future just in case Celiac malabsorption affects it. Thiamine deficiency can be found with B12 deficiency. B12, Pyridoxine B6, and Thiamine B1 all are involved with nerve health and nerve transmission. These three vitamins together to improve nerve health better than just one of them alone. They relieve neuropathy and pain, and improve brain function. You're being an amazing mom for advocating for your daughter's health! Hurrah! Interesting Reading: B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pmc.ncbi.nlm.nih.gov/articles/PMC6930825/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Thiamin metabolism in vitamin B6 or vitamin B12 deficient rats https://pubmed.ncbi.nlm.nih.gov/859042/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/#:~:text=The neurotropic B vitamins -B1,neuropathies [3%2C 4]. -
By Scott Adams · Posted
Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions. -
By Heatherisle · Posted
Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level -
By Heatherisle · Posted
Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!! -
By Scott Adams · Posted
Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
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