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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
    Is your doctor willing to put a celiac diagnosis in your medical record? That could be helpful if you get into a situation where you have to convince other medical personnel of your need to be gluten free. If it is there you don’t need to volunteer that you weren’t officially tested.
  2. RMJ
    I wash my hands after using the computer keyboard because my husband eats at this desk and I can see dried drops of food all over it.
  3. RMJ
    AlohaMaMa, may I make a suggestion? In order to get the most help from doctors, one must describe the problem accurately. (My family has this issue with my elderly father who keeps saying that he doesn’t walk more because he is tired. Does that mean sleepy? Leg muscles tired?) In this thread you have written multiple descriptions of your daughter’s...
  4. RMJ
    Impossible to tell. Hopefully the computer got it right. Perhaps the lab report will have more information.
  5. RMJ
    Celiac disease can definitely have neurological effects. Here is a fairly recent scientific review article about it. If you click on “author information” (near the top, under the list of author’s names) there are email addresses for the authors. Perhaps you could email the author who is listed for correspondence and ask if she knows of gastroenterologists or ne...
  6. RMJ
    I’d call 16 a positive, not a weak or borderline positive. I hope you get definitive answers from the endoscopy.
  7. RMJ
    Different labs use different units for the results of the celiac antibody tests. What was the normal range for your daughter’s test? Some labs say 0-3, some say 0-19, others use different values. (This does not mean that one lab requires six times as much antibody to be called a positive - the units are different “sizes”). Also, antibody levels don’t...
  8. RMJ
    The only line I see is on the “C” side which I presume is the Control (T for Test). Was the faint line visible during the time specified by the instructions? Sometimes a faint line will show up later on this type of test which is not a positive.
  9. RMJ
    I have a shared kitchen and am supersensitive. My husband doesn’t cook, but he makes sandwiches and bowls of wheat cereal, and he uses the microwave. All pots and pans are thus gluten free. We have separate areas for preparing food. In cupboards, refrigerator and freezer gluten free foods are stored on upper shelves (so crumbs from gluten foods can’t...
  10. RMJ
    In all papers I’ve seen where researchers study how much gluten someone with celiac disease can ingest they feed absolute amounts, mg or g, not ppm. To get to recommendations an assumption is made of how many kg of food a person eats in a day and a calculation performed to convert acceptable total mg to ppm based on that many kg of food. When FDA came u...
  11. RMJ
    No, that is not unusual for this type of test. Some labs would give the reference range as 0 to 3.5 but never actually report a zero. Lab tests such as these have a “limit of quantification” below which the results are too variable to be accurate, so they just report “less than #” like what you posted. Also, there are other antibodies that can be ...
  12. RMJ
    You’ve probably just done an excellent job of avoiding gluten! Congratulations.
  13. RMJ
    Yes, that could be an example of a celiac appearance, very thin but with bloating. For people with celiac disease, gluten harms the villi in the intestine. The tips of the villi make the enzyme which breaks down lactose. That is why people with celiac disease can be lactose intolerant until their villi heal.
  14. RMJ
    Please realize that not everyone who has the genes for celiac disease will actually get celiac disease. The majority with the genetic predisposition do NOT get celiac.
  15. RMJ
    Even those who achieve gluten free certification from GFCO don’t have to test every single lot of finished product, although they must have an excellent record in order to reduce the testing frequency. GFCO manual 2021 - see Testing section 6 page 20
  16. RMJ
    The FDA regulations are very strange in that manufacturers do NOT have to test foods to label them gluten free. See item 2 under “Compliance.” FDA gluten free labeling FAQs
  17. RMJ
    Theoretically speaking, it would be very reasonable to respond more when the dose of gluten was greater. Human (and other animal) bodies often respond to substances in a dose-dependent manner.
  18. RMJ
    You must be absorbing it or the blood level wouldn’t be high. Mine were higher than that (1631 pg/mL) when measured 9 years ago. I was not taking any supplements. My gastroenterologist didn’t have an explanation but wasn’t concerned. So far it doesn’t seem to have caused any harm!
  19. RMJ
    I eat beforehand, then don’t eat at the event unless I find something safe. I once just had white rice at an Asian restaurant. I tell people I have to be strictly gluten free and am there for their company, not for the food.
  20. RMJ
    I’m glad you’re not in denial about your diagnosis! Some people have a hard time accepting it. Did you have any celiac antibody blood tests in your previous location? In addition to the tests I listed, which are for celiac disease, you might want to be tested for your levels of various vitamins. I’ll let others say which tests might be most ...
  21. RMJ
    It worries me that you say you want to “verify my disease.” The endoscopy with biopsies is pretty much the gold standard for a celiac diagnosis. Do you not believe it? You could get tested for antibodies, however there are two issues. 1. If you’ve already had antibody tests and are looking to see if they have decreased on the gluten free diet,...
  22. RMJ
    Those findings can definitely be found with celiac disease, although they’re usually more severe. It could be celiac disease that hasn’t gotten really bad yet, or celiac disease that is partially healed. How much gluten were you eating in the month prior to the endoscopy? You should be eating gluten regularly for 6-8 weeks prior to blood wor...
  23. RMJ

    Confused and upset

    RMJ replied to Belll's topic in Doctors

    Whether or not you need a referral to a specialist probably depends on your health insurance. Some types require referrals, and some don’t. It is perfectly ok to go to another doctor if you feel the first doctor has been dismissive of your issues!
  24. RMJ
    There are several different antibody tests for celiac disease. Some people are only positive on the deamidated gliadin peptide antibody tests (DGP).
  25. RMJ
    A colonoscopy cannot detect celiac disease. Did you perhaps have an endoscopy? Biopsies done during an endoscopy can miss celiac disease because the damage may not be evenly distributed.
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