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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
    Congratulations! Good job on the gluten free diet.
  2. RMJ
    A 1:5 titer on the endomysial test is a very weak positive. Many labs don’t consider it a positive unless the titer (dilution) is 1:10 or greater. (Mine was 1:160). So she’s had some borderline positive results, with no clearcut symptoms, and no detected nutritional deficiencies. I personally wouldn’t want to assume she has celiac at this point and c...
  3. RMJ
    Even though they are from the same manufacturer, and have the same ingredients, they may not necessarily be made in the same facility. Perhaps the larger bar is made in a facility or on a line that also processes products with wheat ingredients.
  4. RMJ
    Here is some advice from Massachusetts General Hospital for the amount of gluten children need to eat for a gluten challenge: Gluten challenge
  5. RMJ
    The poor dear! Some adults who think they will soon be giving up gluten make sure to eat their favorite gluten-rich foods as they await their official diagnosis. Can you get/make something special for her to eat, possibly for the last time? She’s only 8, perhaps a smaller “dose” would be sufficient?
  6. RMJ
    We’re not a UK board, just have UK participants, as well as many other countries. The European Society for Paediatric Gastroenterology, Hepatology and Nutrition is the organization who has recognized that biopsies may not be necessary in all children. I’ve attached a 2020 document they issued that has their recommendations. ESPGHAN pediatric cel...
  7. RMJ
    One does NOT have to have all of the tests positive to have celiac disease. One is enough. In your daughter’s case, two are positive and are highly positive - ten times the normal level. For many doctors that would be enough to diagnose celiac disease without putting her through an endoscopy. With those results I don’t think genetic testing would be ...
  8. RMJ
    These are organic and gluten free, although not certified gluten free. https://nuts.com/cookingbaking/beans/garbanzo/organic-raw/1lb.html
  9. RMJ
    I like your doctor’s attitude!
  10. RMJ
    I’m not the one who asked the question, but hopefully @Mystic will see your response.
  11. RMJ
    I’ve had a lot of trouble with drop cookies, either spreading too much or not spreading and being very cakey. They seem to be very sensitive to the amount of flour. I went back to my grandmother’s advice of always baking a test cookie to see if the flour/moisture ratio was correct. I start with less flour than I think I’ll need, bake one cookie, add ...
  12. RMJ
    How about high calorie foods such as peanut or almond butter? That is what I use to maintain or gain weight. I generally try to not eat too much sugar but sometimes I think getting calories is more important than avoiding “junk” foods.
  13. RMJ
    You said you make oatmeal cookies. Are they gluten free oats? Unless special care is taken, oats are usually contaminated with wheat. Plus some people with celiac disease react even to oats that are grown, harvested and processed under special procedures to avoid contamination.
  14. 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.
  15. 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.
  16. 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...
  17. RMJ
    Impossible to tell. Hopefully the computer got it right. Perhaps the lab report will have more information.
  18. 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...
  19. RMJ
    I’d call 16 a positive, not a weak or borderline positive. I hope you get definitive answers from the endoscopy.
  20. 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...
  21. 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.
  22. 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...
  23. 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...
  24. 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 ...
  25. RMJ
    You’ve probably just done an excellent job of avoiding gluten! Congratulations.
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