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RMJ

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Everything posted by RMJ

  1. RMJ
    I avoided oats for several years and got my antibodies down into a normal range before finally asking my gastroenterologist if I could eat them. She said we could do a test. I ate them for six months then she rechecked my antibodies. They didn’t go up, so I can eat oats.
  2. RMJ
    Doctor: “The only treatment I know is gluten free diet.” When I think about it, the gluten free diet doesn’t “treat” celiac the way some drugs treat diseases (like an antibiotic killing bacteria). It just stops the source of the damage. The body then must heal itself. When there is a lot of damage, that will be difficult and additional help may be ne...
  3. RMJ
    You could go strictly gluten free, see if you feel better, and see if the antibody levels go down. Celiac damage can be uneven and the surface area of the intestine is large. The doctor might have missed it.
  4. RMJ
    Here is the website from the company that makes the foods. They are gluten free. https://essentiallybetter.com
  5. RMJ
    The enzyme in villi tips that is frequently low in undiagnosed celiacs is lactase, which breaks lactose (from dairy) into glucose and galactose. When not broken down it can cause diarrhea. Of course damaged intestines could cause all sorts of absorption problems, followed by nutrient deficiencies and problems due to those deficiencies. There was a...
  6. RMJ
    I think the voice for celiac disease is substantially muted by those without celiac disease who treat gluten free as a fad diet. It also is very strange that many doctors seem “anti-celiac.” I once asked a doctor how a proposed test (unrelated to celiac) would affect my intestines because I have celiac disease. His response, “You probably don’t hav...
  7. RMJ
    I don’t have a link for the test method improvement. I’ve just observed that some now report < 10 or < 5ppm, and I know that in general analytical method sensitivity gets better as technology improves. If you really want I can search out the FDA document that describes how they set the 20 ppm limit.
  8. RMJ
    They do not use separate ovens. The certified gluten-free pizzas are put on a piece of foil before going into the oven. Their regular pizza dough is not made in house, so there isn’t flour floating around. I don’t know anything about their chick pea crust.
  9. RMJ
    There is a technical reason for not saying that “gluten free” means absolutely no gluten. When the regulations were published by FDA for gluten free labeling, the 20ppm level was chosen for two reasons. It is ok for most with celiac disease, and at that time that was about as low as most available analytical methods could detect. It would be nice if the...
  10. RMJ
    New information (August 4) from the Journal of the American Medical Association on myocarditis and pericarditis incidence after COVID vaccine. Again, most people improved. JAMA paper
  11. RMJ
    I clicked around and found this: https://www.celiac.com/profile/24026-kurzemiete/content/
  12. RMJ
    Celiac plus breastfeeding could certainly explain your DexaScan results. You’re young enough that vitamin D, calcium and weight-bearing exercise should help to build your bones back up.
  13. RMJ
    This link shows the ingredients for the Bausch and Lomb brand (click the “+” sign next to Ingredients and Appearance). Although there is a slight chance that the mannitol or hydroxyethyl cellulose could be derived from wheat, these ingredients are NOT proteins, and are highly processed so the chance of their containing gluten is extremely low. Dorzolamide Tim...
  14. RMJ
    That’s a higher degree of contamination than I was thinking of. That would bother me, especially the Mike‘s Hard Lemonade which is gluten removed. I’d want to wash the utensils prior to use. I’d probably want to wash them even if I didn’t have celiac disease! Can you convince him to not drink in the kitchen?
  15. RMJ
    I stop worrying at the level of: something might be contaminated by something that might be contaminated. The possible amount of gluten at that point is extremely tiny. If the spills are so large that you might actually ingest a visible amount of the product that would be different.
  16. RMJ
    Going gluten free and having your antibody level go down would also be a great indicator that you really have celiac disease.
  17. RMJ
    Here is another link. The article is mainly a risk-benefit analysis of the vaccine vs COVID which isn’t applicable to you since your daughter unfortunately has already experienced a major vaccine side effect. But in the beginning there is a good description of what’s been seen of myocarditis, and some links to additional articles/studies. https://s...
  18. RMJ
    Has something changed? I haven’t been there since the pandemic started, but they used to have Certified Gluten Free pizzas with a cauliflower crust which I’ve eaten many times with no problems. They don’t make the dough for their regular pizzas in house so there isn’t flour flying around in the air. The gluten free pizzas are prepared in a separate area, p...
  19. RMJ
    https://res.mdpi.com/d_attachment/children/children-08-00607/article_deploy/children-08-00607-v2.pdf https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/myocarditis.html https://www.who.int/news/item/09-07-2021-gacvs-guidance-myocarditis-pericarditis-covid-19-mrna-vaccines https://www.bmj.com/content/373/bmj.n1635
  20. RMJ
    I am so sorry to hear that your daughter is suffering with one of the rare but real side effects of the mRNA vaccines. The information I’ve seen online indicates that most recover from this pericarditis. I hope that there is still a chance of recovery for your daughter.
  21. RMJ
    Has she had a recent blood test for celiac disease? That would indicate whether traces of gluten are getting into her diet (positive test), or if the doctors should be looking for another cause of her misery (negative test).
  22. RMJ
    Lactose, the sugar in dairy products, is digested by enzymes made in the tips of the villi in the intestine. Since celiac disease injures the villi, many people who have not yet healed from celiac disease are lactose intolerant. Since the calcium in dairy is important for a growing child, you might try dairy with less or no lactose, like lactose-free milk...
  23. RMJ
    Hi Ollieotters, Based on another post of yours, I think you were just diagnosed a month ago? That is a very short time for those of us healing from celiac disease. It is extremely common to still have issues/pain, and to have slightly different issues since your diet is different now (gluten free). It is way too soon to worry! Your mother is probably...
  24. RMJ
    I was unable to have a biopsy when I first found out I had high celiac antibodies. I had no symptoms that I was aware of. I decided that it wasn’t a good idea to have my body making antibodies against myself, so I went on a gluten free diet. I finally had a biopsy several years later and did have blunted villi, so they were probably worse prior t...
  25. RMJ
    I looked at the amount of gluten peptides found in urine - the amounts are very, very, VERY tiny. Far less than is needed to cause troubles in even the most sensitive people with celiac disease (nano- or micro-grams vs milligrams). I don’t think you need to worry at all.
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