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RMJ

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Everything posted by RMJ

  1. RMJ
    It doesn’t make sense to me scientifically that someone with celiac would have a compromised immune system. It is an autoimmune disease where the body attacks itself. With some other autoimmune diseases patients are given drugs to suppress the immune system, then they are more vulnerable. Scientific consensus does change sometimes with new data. ...
  2. RMJ
    That used to be true. Whether or not celiac can be diagnosed visually during endoscopy depends on the endoscope. Some newer ones have enough magnification to see the villi.
  3. RMJ
    The chance for cross contamination depends on each manufacturer and product. Some companies have dedicated production lines for gluten free products, some use the same lines for gluten-containing and gluten free products. When multiple products are processed on the same equipment there is a chance for cross contamination, although some manufacturers clean...
  4. RMJ
    Several gluten free cafes in my area couldn’t make it and have closed down.
  5. RMJ
    I’m glad you have an official diagnosis - that can make it easier to convince family, other doctors, etc. I would suggest trying to get the official results, especially the pathology report, from your previous endoscopy. If in the US they have to give them to you. Nurses have been known to forget to phone patients. Antibody tests aren’t perfect, an...
  6. RMJ
    I saw from other posts that you never had an endoscopy. I hope your new gastro recommends an endoscopy, to see if the antibodies correlate with some damage. If no damage though, you won’t know if you healed or never had it. Do you feel better without gluten?
  7. RMJ
    Distillation separates compounds based on the temperature at which they change from liquid to gaseous form. The gaseous form is recondensed and collected. Gluten stays in the original liquid. Fermentation chops up compounds but they are still there in smaller pieces.
  8. RMJ
    There is another scientific paper out that confirms what most of us know - it is very difficult to keep gluten out of our diets. The original paper is behind a paywall but this first link summarizes it. Most folks on “gluten-free” diets ingest unintended amounts Original paper
  9. RMJ
    Here are some recent guidelines from a good source. Sounds like you are doing the right thing by giving him some gluten but not too much. http://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_IssueOne_032019_v7.pdf
  10. RMJ
    I used to develop tests for antibodies. I would say the difference between 1 and 1.7, when both are in the negative range, is meaningless. If you were to run a test10 times using the same tube of blood there would be some variation in the results.
  11. RMJ
    There are some panels where if one is positive they do an additional test -perhaps it is something like that. Hope your doctor can find out something so you aren’t kept in suspense much longer!
  12. RMJ
    You know your body doesn’t appreciate gluten and that you will be going gluten free. I think the question is whether not having an official diagnosis would be detrimental to you. Sometimes a diagnosis is necessary to convince people to remain gluten free. Sometimes it is necessary so that college cafeterias, hospitals, etc. will provide you with safe f...
  13. RMJ
    Looking at the technical/FDA information for BioPlex, it looks a little different from some other tests. One test looks for IgA for both TTG and DGP, along with IgA deficiency, and the other looks for IgG for both TTG and DGP. So it looks like you were tested for everything. I don’t know why the lab wouldn’t put your actual numbers but “not detected” woul...
  14. RMJ
    It sounds like you are avoiding gluten, at least part of the time? Please remember that unfortunately, celiac testing, blood or endoscopy, won’t be accurate unless you’re eating gluten.
  15. RMJ
    The certifying organization certifies to 10ppm. That doesn’t mean all the vitamins have 10ppm, it means that is the maximum amount they might have. They might also have 0ppm but the analytical methods can’t verify that. However, it is not the ppm but the total amount of trace gluten ingested that causes problems for us super sensitives. Vitamin pills are...
  16. RMJ
    Country Life vitamins are certified gluten free (see their FAQs). https://www.countrylifevitamins.com
  17. RMJ
    Tums can cause acid rebound, so although it may give short term relief, it could make things worse in the long run.
  18. RMJ
    I’m the first, and so far only, person in my family to be diagnosed with celiac disease.
  19. RMJ
    RAST allergy tests are usually for IgE, so a true allergy, and are pretty accurate.
  20. RMJ
    The stool tests for antibodies have not been found to be very accurate. Unfortunately, due to a loophole in FDA regulations, that doesn’t mean that labs can’t sell them. https://www.bmj.com/content/332/7535/213 https://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-ava...
  21. RMJ
    The FDA website does not include the package insert, and I couldn't find it on the Dr. Reddy website, either. Sorry. I hope you can get the ingredient information directly from Dr. Reddy.
  22. RMJ
    I’m trying to find the official prescribing information that would list the ingredients. Are you in the US? And is the manufacturer Sandoz or Dr Reddy? I can’t find prescribing information for Dr Reddy’s tablets on their website but maybe I can find it on the FDA website if it is a US drug. I found it for Canadian Sandoz tablets which includes lactose (whic...
  23. RMJ
    It looks like there are several formulations, oral, intranasal and injectable. About which one are you concerned?
  24. RMJ
    I didn’t say it should be withheld, I just disagreed with worst case.
  25. RMJ
    I think the worst case is that someone will think that taking the enzyme means they can be less careful, and they eat more gluten which harms them.
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