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knitty kitty

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by knitty kitty

  1. knitty kitty
    Claire Grace, This is an old thread. Please see my post above. Yes, purple cabbage could have triggered this episode. Purple cabbage contains thiaminase, a chemical that deactivates thiamine. The Vagus nerve needs thiamine to relay messages between the body and the brain. Your Vagus nerve injury may predispose you to an increased metabolic...
  2. knitty kitty
    Try lipothiamine (tetrahydrofurfuryl disulfide (TTFD)). It crosses the blood brain barrier while benfotiamine does not. I was amazed at the difference. I've tried allithiamine (high dose made me smell like garlic), benfotiamine, lipothiamine and thiamine HCl (supplement with niacin, riboflavin, Omega 3s and Vitamin C and the rash goes away). Lipothiamine...
  3. knitty kitty
    Aaron, I had nutritional deficiencies before I started the AIP diet. My various doctors had totally missed diagnosing Celiac Disease, pellagra, anemia, and thiamine deficiency. Eventually I did find a doctor who ordered a genetic test for Celiac Disease which showed I have two genes for Celiac Disease. However the nutritional deficiencies aspect...
  4. knitty kitty
    No! Wheat (rye and barley) in any form is still damaging! As you said... "I felt some slight joint pain that night but that was it." Your immune system DID recognize the wheat and was just beginning to get revved up. Your immune system down regulates when your body is not being constantly assaulted by gluten, but it still remembers, and...
  5. knitty kitty
    Kpool, Were you out in the sun without a hat before you noticed the scalp blisters? Curiosity.... Knitty Kitty
  6. knitty kitty
    Caffeine and coffee and tea consumption effects thiamine levels. One of the symptoms of low thiamine is anxiety or panic attacks. https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00207/full#:~:text=Heavy consumption of tannin-containing,7%2C 14%2C 15). "Heavy consumption of tannin-containing or food rich in caffeine, theobromine, and theophylline...
  7. knitty kitty
    In searching for answers to my health problems, thiamine deficiency kept coming up again and again. I strongly believe thiamine deficiency to be at the root of Cyclic Vomiting Syndrome and all the throwing up problems after eating gluten (refeeding syndrome) described by our guests. I found these articles to be most helpful. Cyclic...
  8. knitty kitty
    Aaron, The AIP diet was very simple for me to follow. I gave up putting together complicated recipes because I was having difficulty remembering, planning and thinking, too. I simply ate to live. I bought ground meat and made a patty. I could get four to six patties out of a pound of ground meat, depending on the size of the patty and the size...
  9. knitty kitty
    Josh, What was in the sauce that did cause you to get ill? Was it a cream sauce or a sauce that contained yogurt or sour cream? Dairy can cause problems if you're lactose intolerant or have a casein allergy. Lactose intolerance and casein allergy can happen outside of a Celiac reaction. Did it contain eggs? Egg intolerance or allergy can...
  10. knitty kitty
    I'll say it again..... Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies. It's rare to have a deficiency in just one vitamin or mineral in Celiac Disease. "Niacin for treatment of nonalcoholic fatty liver disease (NAFLD)" https://www.lipidjournal.com/article/S1933-2874(19)30290-9...
  11. knitty kitty
    Azur, Glad to hear from you. No, I doubt you've sustained any permanent damage. You've been eating, so you've probably gotten some thiamine in your diet. And the human body has a great ability to recover and heal. There's a progression of symptoms with thiamine deficiency, from subtle symptoms to the more severe Wernicke-Korsakoff syndrome...
  12. knitty kitty
    Hold off on the Thiamine supplements because if you start them now, supplements will skew a future test if they have get more blood to do the erythrocyte transketolase test. When you have a thiamine deficiency, the thiamine transporters on cell membranes turn off. Thiamine transporters are sort of like a doorman that only lets thiamine into a building...
  13. knitty kitty
    NeverLikedRollercoasters, If I can help someone else after the muck I had to wade through because my doctors didn't recognize an obvious deficiency disease, I will be ecstatic. Keep us posted!
  14. knitty kitty
    Did they give you iodide IV contrast dye with your MRI? We're you sick afterwards?
  15. knitty kitty
    Get the erythrocyte transketolase test! I had the unrelenting nausea. And the Gastroparesis (where things don't move along your intestinal tract like they should). Thiamine is needed by the lower brain where stuff is controlled like digestion, stomach acid secretion (overproduction of digestive enzymes causing ulcers or overproduction), peristalsis...
  16. knitty kitty
    Hurray! Let us know the results!
  17. knitty kitty
    NeverLikedRollercoasters, Ask your doctor for a erythrocyte transketolase test for thiamine deficiency. Not doctors here, can't diagnose, but you seem to have symptoms of gastrointestinal beriberi described in this article... https://link.springer.com/article/10.1007/s11606-015-3326-2 Peptic ulcers can cause malabsorption of necessary vitamins...
  18. knitty kitty
    Gastroparesis can be caused by thiamine deficiency. Many Celiacs suffer from vitamin and mineral deficiencies even on a gluten free diet. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3499101/ https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/ Get tested for thiamine deficiency using erythrocyte transketolase test...
  19. knitty kitty
    Keep in mind, Celiac Disease is genetic. All first degree family members should be tested for Celiac as well. Your sister may prefer your gluten free foods because she may be having subtle symptoms as well. Discuss this possibility with her.
  20. knitty kitty
    Ria.Rose, The vagus nerve is affected by thiamine deficiency. I have had POTS and also thiamine deficiency. When the Thiamine deficiency was corrected with high dose thiamine, the POTS went away. See Dr. Derrick Lonsdale and Dr. Chandler Marrs' book called "Thiamine Deficiency Disease, Dyautonomia, and High Calorie Malnutrition". Read...
  21. knitty kitty
    Can be a symptom of thiamine deficiency. Thiamine is needed to process carbohydrates into energy. Muscle weakness is a symptom of thiamine deficiency.
  22. knitty kitty
    I took regular B-Complex vitamins and didn't feel much different. I kept researching and found that when you have a deficiency of thiamine, the thiamine transporters that help thiamine get into the cells turn off and don't function. In order to get the Thiamine transporters to turn back on, you have to flood the body with thiamine so thiamine can "force...
  23. knitty kitty
    Elevated liver enzymes and thiamine deficiency My doctor accused me of lying about drinking, but I do not drink alcohol. I have never been able to tolerate it. It turned out to be Thiamine Deficiency! Alcohol consumption can cause thiamine deficiency because alcohol inhibits thiamine absorption in the intestines. Abnormal liver enzymes occurs...
  24. knitty kitty
    Sharon, The same thing happened to me. My doctor accused me of lying about drinking, but I do not drink alcohol. I have never been able to tolerate it. It turned out to be Thiamine Deficiency! Alcohol consumption can cause thiamine deficiency because alcohol inhibits thiamine absorption in the intestines. Abnormal liver enzymes occurs in...
  25. knitty kitty
    Azure, I did the same thing. I took regular B-Complex vitamins and didn't feel much different. I kept researching and found that when you have a deficiency of thiamine, the thiamine transporters that help thiamine get into the cells turn off and don't function. In order to get the Thiamine transporters to turn back on, you have to flood the body with...
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