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RMJ

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Latest Celiac Disease News & Research:

Everything posted by RMJ

  1. RMJ
    Here is the FDA review : https://www.fda.gov/media/81500/download
  2. RMJ
    If you’ve been gluten free and are now doing a challenge, I don’t think symptoms, GI or other, would necessarily indicate detectable antibody levels. A recent scientific paper demonstrated that the nausea and vomiting people with celiac get a few hours after eating gluten was via a cytokine response from a type of T cells, not an antibody response. Also, th...
  3. RMJ
    The 10mg figure is an average. Some people can handle more, some less. The FDA reviewed all the literature before finalizing the gluten free labeling regulations and there was quite a range. if your scientific husband want to read the whole FDA review let me know and I’ll try find the link.
  4. RMJ
    When the blood tests are developed they don’t try to get a correlation between the numbers and the degree of villi damage. They basically just look for positive blood test with positive biopsy, and negative blood test with negative biopsy. I know some tests have a weak positive range - I wish I knew the brand so I could look up their approval on the F...
  5. RMJ
    Have you been retested for celiac antibodies? Are they back in the normal range? I was diagnosed by blood tests plus biopsy, but I am the only one in my family with celiac. Family history isn’t necessary to have this disease.
  6. RMJ
    I have a marble rolling pin left from my pre-gluten free days. Do you think it is ok to use it? The handles are wooden - I thought I could scrub, sand and varnish them to seal in any leftover flour. What about the marble? It is very smooth and shiny.
  7. RMJ
    Have your villi healed? Are your antibody levels normal?
  8. RMJ
    I’m skinny and haven’t gained weight after going gluten free.
  9. RMJ
    Good luck, my path towards diagnosis also started with 23andMe.
  10. RMJ

    Mixed Day.

    RMJ commented on Ennis-TX's blog entry in Daily Life and Compromising

    Would it be possible to get some sort of support animal that you could take places with you - that might lead to some conversations/friendships? Animals are a great way to break the ice but I don’t know if an iguana travels well. I used to take a golden bearded dragon to visit people for pet therapy visits. (Not my dragon, belonged to a vet at the humane s...
  11. RMJ
    Science has recently discovered more about the biological mechanism at the cellular level that causes the severe reaction to gluten in some with celiac. It appears to be due to cytokine release. It could certainly be possible for other foods to also cause cytokine release (not due to antibody “cross-reactivity”) because cytokine release is NOT limited to ...
  12. RMJ
    I am basically a silent celiac but definitely feel better now that I am gluten free. I also no longer have troubles with nausea. My GI didn’t think that was a symptom, because I told her my stomach gets upset when I am stressed, but I think it was.
  13. RMJ
    TTG IgA and Celiac Reflex Panel probably do not cover the whole range of celiac blood tests. Hopefully a gastro will order the full panel for you.
  14. RMJ
    I would ask for a copy of the official biopsy results. Sometimes what is said over the phone isn’t the whole picture.
  15. RMJ
    Antibody cross-reactivity has a VERY specific meaning for immunologists and is very important when developing/using antibodies in the laboratory or for diagnostic blood tests. It would be relatively easy to test if there was interest. Immunologists are probably not interested because it is unlikely that the antibodies in celiac disease also bind to all of...
  16. RMJ
    My MD brother goes very strictly by official guidelines published by recognized medical organizations. The American College of Gastroenterology says that in asymptomatic first degree relatives testing should be “considered.” They “recommend” in first degree relatives with possible symptoms. (I personally think that being very skinny and eating a lot c...
  17. RMJ
    Only 1 of 3 has been tested and he was negative. Father wouldn’t be willing to give up bread anyway (plus he is 95 with no symptoms). The brother who is an MD hasn’t done it.
  18. RMJ
    The test on your back looks for allergies, which are different from celiac disease. Will your doctors test you for celiac? If not, in most states in the US you can order your own blood tests - just search on something like “celiac lab tests online.” The full panel would include IgA and IgG TTG and DGP tests, although it may be difficult to find all of ...
  19. RMJ
    Congratulations on getting your antibody levels down! It is very likely that your villi are at least better than they were, Unfortunately the only way to tell for sure if villi have healed is to look at them (i.e. endoscopy).
  20. RMJ
    1. The FDA reviewed all of the scientific literature before issuing their regulations for labeling foods gluten free. It is a 93 page summary. The amounts of gluten that did not yield symptoms or effects on villi in people with celiac disease were quite varied from study to study and person to person. There was one study where one dose of 125mg of gluten...
  21. RMJ
    So glad to hear that she is gaining weight rapidly! Some doctors just don’t like to admit that someone has celiac disease and/or food sensitivities.
  22. RMJ
    I wish mine would go away. Being gluten free for years hasn’t made any difference.
  23. RMJ
    So glad she is at home where you can keep her food safe!
  24. RMJ
    Here are the ingredients: Each bottle of CLENPIQ contains 10 mg sodium picosulfate, USP; 3.5 g magnesium oxide, USP; and 12 g anhydrous citric acid, USP. The product also contains the following inactive ingredients: acesulfame potassium, cranberry flavor, disodium edetate, malic acid, sodium benzoate, sodium hydroxide, sodium metabisulfite, sucralose...
  25. RMJ
    I just found a wheat, barley and rye free dog food that does not have peas, lentils or other legumes. Now my dog and I can both be safe. Purina Pro Plan Sport Performance 30/20. There is a chicken version and a salmon version. My dog loves it. It does have corn and some rice. Purina did a lot of the original research on dog nutrition and does feeding...
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