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RMJ

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Everything posted by RMJ

  1. RMJ
    Were the tests run at the same lab? Unlike most lab tests, celiac numbers can’t be compared from tests made by different manufacturers because of how the units of measurement are set. This must be frustrating! I’m glad that you at least feel better.
  2. RMJ
    Equipment used for pharmaceutical manufacturing of more than one product has to be VERY thoroughly cleaned between products - to avoid contamination with the previous active ingredient. The cleaning methods have to be thoroughly evaluated before use. I would think the risk of gluten contamination of pills/caps from shared equipment would be very low. There...
  3. RMJ
    Here are the inactive ingredients. None of these should contain gluten. You would need to ask the manufacturer if there is any risk of contamination. In the unlikely event that there was contamination, the amount you might ingest from a small capsule would be very, very tiny. SILICON DIOXIDE (UNII: ETJ7Z6XBU4) CETOSTEARYL ALCOHOL (UNII: 2DMT...
  4. RMJ
    Have you had repeat celiac antibody bloodwork to see if antibodies are normal or still elevated? Perhaps your intestines are still damaged and you still aren’t absorbing calories well - especially if you’ve cheated a few times. Bloodwork would be an indirect way to evaluate that, but sometimes antibody levels return to normal before full intestinal healing. ...
  5. RMJ
    Here are some ideas: When should I have follow up celiac blood tests. Should I be tested for nutrient deficiencies. Should I have a bone density test. How long might it take for my gut to heal enough to take care of my anemia.
  6. RMJ
    If run at the same lab, there probably isn’t much difference between a 5.7 and a 5.8. If you run a sample from the same test tube twice you could get that type of result. Was the October sample run at the same lab? The normal range is stated differently and the result doesn’t include the first decimal place. When tests are made by different manufacturers the...
  7. RMJ
    I would recommend starting a new topic, with a title something like “Need pediatric celiac specialist in Portugal” to attract answers. I see that there is a Portuguese celiac association, that might be a place to start. Portugal Celiac Association
  8. RMJ
    Do you have any scientific references for that statement? I have not heard that before. I used to develop tests for antibodies, although not for celiac disease. Results are rarely reported as zero, low results are reported as <X, where X is either the limit of detection or the limit of quantitation. For development of the original celiac antibody...
  9. RMJ
    Is this for a child or adult, and what country or part of the country?
  10. RMJ
    You could think of it as being very lucky - their disease has been caught when they are young, before they have uncomfortable symptoms, probably before years of nutrient deficiencies, damage to intestines and other body systems.
  11. RMJ
    Congratulations! Good job on the gluten free diet.
  12. 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...
  13. 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.
  14. RMJ
    Here is some advice from Massachusetts General Hospital for the amount of gluten children need to eat for a gluten challenge: Gluten challenge
  15. 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?
  16. 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...
  17. 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 ...
  18. RMJ
    These are organic and gluten free, although not certified gluten free. https://nuts.com/cookingbaking/beans/garbanzo/organic-raw/1lb.html
  19. RMJ
    I like your doctor’s attitude!
  20. RMJ
    I’m not the one who asked the question, but hopefully @Mystic will see your response.
  21. 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 ...
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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