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RMJ

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Everything posted by RMJ

  1. RMJ
    I will eat at my brothers’ houses but we discuss recipes first and I look at the labels of the ingredients. Food just labeled gluten free does not have to be tested for gluten content. Food that is certified gluten free has been evaluated and tested by an independent agency, although I don’t think they test every lot.
  2. RMJ
    Different labs use different units and standard ranges, so searching google for a standard range isn’t helpful. The range to compare to is Kaiser’s, and that gives him a positive. I hope you can get the referral and the rest of the tests easily.
  3. RMJ
    The only way it could come from the mother more often would be if it was x-linked and always came from the mother - and I have never heard that for celiac.
  4. RMJ
    Here are the ingredients, fom the FDA website, although it looks like it is generic so it could vary from maker to maker. It does have lactose. Each tablet, for oral administration, contains 50 mg, 100 mg, 150 mg or 300 mg of trazodone hydrochloride, USP. In addition, each tablet contains the following inactive ingredients: 50 mg and 100 mg: Corn...
  5. RMJ
    Each lab has its own reference ranges.
  6. RMJ
    I’ve used my gluten free status as an excuse to avoid social occasions - I wasn’t comfortable with them even before I was disgnosed with celiac. Still, in order not to be a complete hermit I tried going to a party and not eating. It was a little awkward but not nearly as bad as I expected. The next time I tried it at a lunch with coworkers it was even eas...
  7. RMJ
    I don’t know what your sister’s relationship with her mother-in-law is, but if not good that might make it hard to request a special food. I will eat at my brother’s house but we discuss menus and ingredients and I check labels on anything they use. If I go to parties I just don’t eat. It was difficult the first time but got much easier after I had don...
  8. RMJ
    I think it is great that you eat gluten free when he is there so he doesn’t feel left out. Smooth, hard surfaces like glass, metal and china can be washd. If the surface is rough, porous or hard to clean then it can hold onto gluten.
  9. RMJ
    Does the current 23andMe test give results for celiac? I know they had to stop saying so much about health due to the FDA. Some people take their 23andMe raw data and put it into other websites to get health results.
  10. RMJ
    It depends on the normal range for the lab where the test was run. The results are in arbitrary units, not absolute amounts of antibody per milliliter of blood. Some labs the normal range is 0-19, some are 0-3, etc.
  11. 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.
  12. 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...
  13. 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.
  14. 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...
  15. 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.
  16. 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...
  17. 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.
  18. 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.
  19. 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
  20. 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.
  21. RMJ
    Yes, it was.
  22. RMJ
    My biopsy results came very quickly, I think 2 or 3 days.
  23. RMJ
    This is great, thank you for posting.
  24. RMJ
    Couscous is made from wheat and should not be eaten by those with celiac disease. White rice is fine.
  25. 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!
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