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RMJ

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

Everything posted by RMJ

  1. RMJ
    From the EZGluten website: “Can I test non-food items such as supplements, enzymes, medications, cosmetics, toiletries and cleaning products?” “The EZ Gluten® test was designed and validated for testing foods. While it will also work in a variety of other sample types, we cannot guarantee the results or the limit of detection for non-food items....
  2. RMJ
    Have you actually been diagnosed with dermatitis herpetiformis? If so, you definitely need to be on a strict gluten free diet.
  3. RMJ
    Yes, people often post pictures of their results without identifiable information.
  4. RMJ
    Is that total IgA, of one of the celiac antibody tests?
  5. RMJ
    The women’s ranges probably start to diverge from the men’s at 14-15 years old due to the beginning of menstruation, and monthly loss of iron. Are these ranges from the lab that ran the test? Looking on the internet the ranges are not all the same, even though the units used by labs are the same. And the ranges are huge!
  6. RMJ
    If the result is >x, it is because the sample is outside the range that will give an accurate number. It is like if you had a bathroom scale that went up to 250 pounds, but someone who was 500 pounds stepped onto it. You’d know it was >250, but you wouldn’t know the actual weight. The FDA authorizations for the celiac antibody tests are for dia...
  7. RMJ
    The ranges are different because the units in which results are reported are different. It is as if one test manufacturer used micrograms and one used ounces, but the celiac test units are arbitrary and there is no conversion factor for comparing them. The reason? There is no standard with known mass of antibody per volume of liquid. To have a standard...
  8. RMJ
    In order to get my antibody levels down to a normal range I had to switch to only eating packaged foods that are certified gluten free, or come from a company with an excellent reputation amongst celiac patients. Not everyone is this sensitive. Of course meat, milk, fresh fruits and vegetables are naturally gluten free so I can eat those.
  9. RMJ
    For me, my DGP IgA took longer to normalize than the TTG IgA, and went up once when gluten contamination snuck into my diet and the TTG stayed normal.
  10. RMJ
    I usually check my TTG and DGP once a year. Once my antibody levels got down into the normal range, I’ve only had one time when the DGP IgA went back up to positive. After that I requested a test after 6 months to see if my dietary changes were working. I’ve had trouble with nausea recently so I asked my doctor to check sooner (and the results are all fin...
  11. RMJ
    The rapid reaction is due to cytokine release: Cytokine release in response to gluten challenge
  12. RMJ
    I think he may be partially right on each item. 1) It will obviously take time for villi to regrow so they can absorb nutrients. But some of the cytokine reactions to ingested gluten should stop when no more gluten is eaten. 2) A gluten challenge and endoscopy can diagnose celiac disease if there is enough damage. It just can’t rule it out if t...
  13. RMJ
    Since you did have a positive deamidated gliadin peptide IgA you could try a gluten free diet for a few months and see if you feel better. You don’t need a doctor’s permission to do that!
  14. RMJ
    The biopsy was and still is considered the gold standard for diagnosis of celiac disease.
  15. RMJ
    CT scans DO use radiation. MRIs don’t.
  16. RMJ
    Gluten Free Watchdog has found a problem with gluten-free Harvest oats. It is being investigated. I think this link will work for people who don’t subscribe to gluten-free Watchdog: gluten-free watchdog no longer recommends gluten-free Harvest Oats
  17. RMJ
    I’ve had the same problem with cakes. I don’t think there is enough protein structure to maintain the shape. I will often add an extra egg and make cupcakes instead.
  18. RMJ
    I’m guessing that the dentist makes Agape use an alcohol-containing mouthwash before they do any dental work? (In an attempt to minimize COVID transmission). My first dentist appointment post COVID included mouthwash.
  19. RMJ
    Glad you got a definitive answer! I’m glad you followed your instincts and insisted on the biopsy.
  20. RMJ
    I was never diagnosed with an ED, but I think I was awfully close to having anorexia. I would suggest getting more ED support, because a major change has been made in what you can eat, and I think the ED part of eating is a lot more complex than the gluten free part. Perhaps if you tell us some of your safe foods we can help evaluate if they “may contain” ...
  21. RMJ
    I’d be cautious. The bacillus species are normally a small portion of the intestinal flora. The company that makes the product published a paper in 2021 studying the product in a model of the human GI system and saying more research was needed in vitro and in vivo. I’d want to see some research studying the product in vivo in humans. Treatment wit...
  22. RMJ
    This organization fights for accurate labeling (hope I’m allowed to link her site here). Gluten Free Watchdog
  23. RMJ
    Scientists are starting to study what causes rapid and severe reactions to gluten in some with celiac disease, and one possibility is cytokine release. Here is a fairly readable paper that explains it: Patient factors influencing acute gluten reactions and cytokine release in treated coeliac disease I hope your specialist accepts symptoms...
  24. RMJ
    Walkinlab will have a physician who’s name will be on the order, even though he has never seen you or talked to you. I’ve used walkinlab.com several times, when my gastroenterologist only liked to test me once a year.
  25. RMJ
    Here is an example of a very comprehensive panel that you can order online from walkinlab.com, then go to a Labcorp site for the blood draw. It is $330. If you click on “sample report” you can get more detail. Depending on where you live, you may or may not be able to do this (I’m assuming you are in the US). Comprehensive celiac panel If you w...
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