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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
    Can you get a second opinion from another gastroenterologist? Your second test is also positive on deamidated Gliadin IgG, so two positives. Some people with celiac disease are positive on all four tests (me), some are only positive on one.
  2. RMJ
    It is great that your future in-laws took such good care of you. We get too many posts here from people whose families don’t believe their celiac diagnosis, try to get them to eat “just a little gluten,” etc. This was probably all very new for your fiance’s family. I would guess that next time they serve you gluten free food they won’t talk about it ...
  3. RMJ
    I looked in a great gluten free cookbook (from America’s Test Kitchen) which explains why they put in the ingredients they do. Here are some reasons they have for using almond flour in baking recipes: Less starchy. More “chew”. Add richness without greasiness (gluten free flours sometimes don’t absorb the fats as well as wheat flour)....
  4. RMJ
    You’ve probably already checked, but any chance one of the “Many new meds” has gluten in it?
  5. RMJ
    The item that worries me the most in your list is people baking with flour in a shared kitchen. Flour can easily become airborne and contaminate things.
  6. RMJ
    That actually sounds like a smart doctor! Some would just say “not celiac” and not give you any more assistance. You might try having her go completely gluten free and see if the antibody levels return to normal levels.
  7. RMJ
    It is difficult to tell exactly which celiac tests were done. tTG/DGP does include both types of tests, but it doesn’t say whether it was IgA or IgG and doesn’t give numbers so one can’t tell if it is very negative or just under the cutoff for positive. Saccharomyces is a type of yeast, and having antibodies to it as you do is a possible indicator of in...
  8. RMJ
    You can live as someone with celiac disease without a biopsy. I’d just tell future doctors I had celiac disease and wouldn’t even mention how it was diagnosed unless asked. I didn’t have a biopsy at first due to unrelated medical reasons. At first my diagnosis was just “elevated celiac antibodies.” Eventually my gastroenterologist said I had cel...
  9. RMJ
    Maybe the typo was in your results and they meant 1:5 instead of 1:50. A lot of labs use above 1:5 as the cutoff. That would make sense. It would also fit with your TTG results which are also way above the cutoff. I hope you get a clearcut answer from your endoscopy biopsies.
  10. RMJ
    EMA = endomysial antigen. This was the original blood test for celiac disease. (It is done with tissue, not an agglutination assay). Serum is diluted and put onto a microscope slide with endomysial tissue - a type of connective tissue. Then other solutions are added so that IgA antibodies binding to the tissue can be detected under a microscope. Titer...
  11. 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.
  12. 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...
  13. 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...
  14. 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. ...
  15. 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.
  16. 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...
  17. 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
  18. 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...
  19. RMJ
    Is this for a child or adult, and what country or part of the country?
  20. 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.
  21. RMJ
    Congratulations! Good job on the gluten free diet.
  22. 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...
  23. 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.
  24. RMJ
    Here is some advice from Massachusetts General Hospital for the amount of gluten children need to eat for a gluten challenge: Gluten challenge
  25. 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?
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