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RMJ

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Everything posted by RMJ

  1. RMJ
    I’m not sure I’d avoid a food just because one other person with celiac (your mother) is sensitive to it. There are some foods that many with celiac have troubles with - I’m sure someone will pop on here with that list for you. Bananas are what was fed to children with Celiac disease many years ago, the banana babies, so they should be ok.
  2. RMJ
    Last time I went to the Melting Pot they didn’t use the type of gluten free beer that was listed on their menu. They used a gluten-removed beer. I think the local manager was trying to save money. I reported them to the certifying organization, GFCO. GFCO took it very seriously. Nima posted mixed results from their supposedly gluten free sauces - they s...
  3. RMJ
    I understand your occasional desire to feel worse when eating gluten. I don’t have obvious symptoms, so I’ve had to be more and more compulsive about avoiding any trace of contamination to get my antibody levels down to normal. Maybe there was just one food that was contaminated, but I’ll never know which one.
  4. RMJ
    Even though I had positive antibody tests I had a very difficult time getting my first appointment with a GI. I also have trouble each year getting the nurse to understand that I’d like to get my blood tests BEFORE my appointment so my doctor and I can discuss the results. My doctor is wonderful and always happy to see me. I agree with cyclinglady, keep t...
  5. RMJ
    There are several types of “swallowing studies” that doctors can do. In one you swallow a barium solution and they do imaging to actually see how things are working in your throat. My husband had one done when he felt like he had a lump in his throat.
  6. RMJ
    The FDA has not said the tests are not useful for monitoring (sorry about the double negative). The test manufacturers have not submitted data requesting that their tests be approved by FDA for monitoring. Since doctors already order the tests for monitoring there wouldn’t be much monetary advantage for the manufacturers to do a clinical trial proving t...
  7. RMJ
    The celiac antibody tests in the US are only approved by the FDA for diagnosis, not for monitoring recovery and comparing from one time point to another. Diluting the sample and rerunning the test to get a number within reportable range would not be cost effective for a laboratory.
  8. RMJ
    In the US in most states you can order and pay for some blood tests online, then go into a lab for the blood draw. Mymedlab.com, walkinlab.com are two of them.
  9. RMJ
    And if you are a nerd like me and want to read the original paper in the Journal of Biological Chemistry: Open Original Shared Link
  10. RMJ
    I used to have abdominal pain that finally went away when I stopped wearing pants with an elastic waist. I even have to make sure that undergarments aren’t too tight around the waist. Sometimes when I sleep flat on my back I wake up with abdominal pain. I sleep with a wedge to avoid that.
  11. RMJ
    Yes, it was.
  12. RMJ
    My biopsy results came very quickly, I think 2 or 3 days.
  13. RMJ
    This is great, thank you for posting.
  14. RMJ
    Couscous is made from wheat and should not be eaten by those with celiac disease. White rice is fine.
  15. RMJ

    ARCHIVED GIVE ME SUGAR!

    RMJ replied to Julie1's topic in Coping with Celiac Disease

    I had a fair sweet tooth prior to going gluten free. It didn’t get worse like you are describing, but after long enough gluten free it went away because I didn’t enjoy the avalable gluten free cookies etc. I don’t remember how long that took, but there is hope for you!
  16. RMJ
    I’ve had that trouble in the past and it was diagnosed as depression. Perhaps a therapist or gluten-free antidepressant?
  17. RMJ
    If you eat 1 kilogram (2.2 pounds) of food that contains 20ppm (parts per million) of gluten, you would have eaten 20 milligrams (mg) of gluten. Many, but not all, people with celiac can tolerate that amount. When FDA set 20ppm as the limit it was partly because it would be safe for most with celiac, and because at that time most analytical methds for...
  18. RMJ
    I’d add the blood test for deamidated gliadin peptides, DGP IgA and IgG.
  19. RMJ
    Diagnosed at 57
  20. RMJ
    Congratulations!
  21. RMJ
    I’m the only one in my family.
  22. RMJ
    You asked how I keep from being hungry if I go to restaurants/parties and don’t eat. I just eat ahead of time. There used to be a thread going here where people posted what they were cooking for dinner that night. It all sounded delicious, and not as if people were depriving themselves at all!
  23. RMJ
    I think you have a very smart endocrinologist and a caring GI, although that may not matter to you right now. I was tested because of my migraines. I didn’t think I had symptoms, but once I went strictly gluten free I just felt better and had more energy (although still the same migraines). Maybe that fatigue is due to celiac. I’ve been to work lunches and...
  24. RMJ
    Wheat starch cannot be converted to wheat protein - I would not trust anything that they say!
  25. RMJ
    If there is a Target near you, they have a lot of store brand (up and up) drugs labeled gluten free, for example ibuprofen and acetaminophen.
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