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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

    1. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
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      Terrible Neurological Symptoms

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    3. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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    • HectorConvector
      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
    • Jmartes71
      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever 
    • knitty kitty
      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].
    • Scott Adams
      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.
    • Heatherisle
      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
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