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trents

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by trents

  1. trents
    Lactose intolerance can also be an issue with dairy for many celiacs. However, that often improves as they experience healing in their guts.
  2. trents
    Personally, I have had no issues with Bob's Red Mill gluten-free products. I have used their Buchwheat groats for a long time but I have also used Anthony's buckwheat groats without issue and Anthony's is more economical because it comes in larger sizes: https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B00QKXVAN2/ref=sr_1_2_pp?crid=2466LMLPDP...
  3. trents
    Welcome to the forum, Gina C! First, were you aware that cross contamination of oats with other gluten-containing grains is not the only problem with oats in the celiac community? About 10% of celiacs react to the oat protein, "avenin" as they would gluten. The two are similar enough in structure that some celiacs have immune systems that identify avenin...
  4. trents
    Genetic testing is only good for ruling out celiac disease since 40% of the population has at least one of the genes having been tied to celiac disease. If you don't have any of them (actually, I think they now have identified a third gene) then you rule celiac disease out.
  5. trents
    "glistened"? Did you mean to type "glutened"?
  6. trents
    You have had several celiac antibody tests run and they were all negative with the caveat that we don't know if you were IGA deficient. But based on the data we do have it doesn't look like celiac disease. So, I would lean toward NCGS with some other complications.
  7. trents
    I retired from a hospital setting and I can tell you they often are not up to speed when it comes to offering safe foods to the celiac/gluten sensitive community. And yes, you think they would be. But like a lot of commercial entities, they are at the mercy of the claims of vendors and manufacturers and probably not consistent at avoiding CC in addition to...
  8. trents
    Well, maybe I wasn't wrong about the sensitivity of the EMA after all: https://factdr.com/diagnostics/blood-tests/ema-endomysial-antibodies/ "The EMA-IgA test is an important marker for celiac disease, portraying a 99% accuracy rate. This test is expensive and involves a high degree of technical precision. It is used as an accompanying test along with...
  9. trents
    Sorry, I misunderstood your first post to say that you had the tTG results back already and that they were positive. So, you are conjecturing that the tTG may be positive because the test results are taking this long to be reported, correct? "EMA-IgA antibodies are very sensitive and specific for coeliac disease (94-100%), therefore positive tTG ab samples...
  10. trents
    Do you know what your IGA-tTG score was and do you have the reference range for negative vs. positive? You say, "Hey trents. Done some more looking up and the hospital says the do an IgA-tTG in the first instance and would only do an IgG if the serum is flagged as having a low RU value (which I understand to mean if it looks like you have an IgA deficiency...
  11. trents
    Okay. Well it sounds like you interpreted the instructions correctly. Perhaps the NIH has recently changed their protocol. We have a couple of moderators on this forum in the UK who may want to comment on this. But historically, the NIH has ordered an endoscopy with biopsy when the tTG-IGA was positive. But you refer to the "tTG". Which one? There is...
  12. trents
    Welcome to the forum, EmNaz93! Are you sure it's not the other way around? I would think they wouldn't go to the expense of doing the EMA unless the tTG-IGA was negative in the face of definite celiac symptoms. Normally, what follows a positive tTG-IGA is an endoscopy with biopsy. In the UK, however, if the tTG-IGA is 10x normal or higher they will often...
  13. trents
    Welcome to the forum, Lori! It does look like you have celiac disease and given the subnormal total serum IGA score and your low gluten diet, I am sure the scores would have been higher. Unfortunately, if you begin a gluten free diet now you will need to go back to eating significant amounts of gluten daily for at least two weeks in advance of the endoscopy...
  14. trents
    Welcome to the forum, Emmy208! Which IGA was done? There's more than one IGA test for celiac disease. The most popular one is the tTG-IGA. In addition to that, total serum IGA should be tested for because if it is low it can cause false negatives in the IGA tests that are specifically designed to detect celiac disease. It is no more true that people...
  15. trents
    Marmee, how much gluten were you eating? There has been a lot of debate about how much daily gluten should be eaten. From the so-called "experts" we see everything from 1/2 should of wheat bread to three or more slices daily should be eaten for a minimum of six weeks in order for the gluten challenge to yield valid results. If I were you, I would seek...
  16. trents
    I do not have Barrett's, that I know of at least. But what I do know is that Barrett's is associated with GERD and the chronic inflammation of the esophagus it causes. I also know that GERD is more common in the celiac/NCGS population than in the general population. And I recall having a forum member who had Barrett's post about it a while back. And this...
  17. trents
    I think some GMO products are actually engineered for that very reason, that is, to make them more pest and/or disease resistant.
  18. trents
    You and your husband need to be aware that kissing can be a source of getting "glutened" if he is still consuming gluten. Something to think about at least immediately after he has eaten a gluten containing meal and traces of gluten containing food might still be in his saliva.
  19. trents
    Once you've been gluten-free for a while and healing in the small bowel lining is well along, you likely will find those symptoms subsiding. It can take around two years for thorough healing of the SB lining but you should start feeling much better in a few weeks or at least 2-3 months if you are faithful in avoiding gluten.
  20. trents
    What are your symptoms? What led to your diagnosis?
  21. trents
    Welcome to the forum, lisamax! It is a bit overwhelming at first but in time you will develop a sixth sense of what you should avoid. In the beginning there is a considerable learning curve. Sooner or later it becomes the new norm insofar as your dietary life goes. Perhaps this will help you get off on the right foot: Be most wary of eating...
  22. trents
    Good thought. Personally, I think GMO foods need to be evaluated on an individual basis rather than painting all GMO products with the "evil" wide brush.
  23. trents
    Actually, it's the antibodies that persist in your system, not the gluten. Thanks for the response. If the doctor wants you to have endoscopy with biopsy you would need to go back on regular amounts of gluten (at least two slices of wheat bread or the gluten equivalent daily) for at least two weeks before the procedure.
  24. trents
    Welcome to the forum, Gracie S! Have you been checked for low blood pressure lately? May I ask your age? Also, now that you have removed wheat from your life, I'm not sure you realize that you also have removed a significant source of vitamins in the process. commercial wheat flour is fortified with extra vitamins. This is mandated by the FDA. Gluten...
  25. trents
    Welcome to the forum, KarenJD! Had you stopped eating gluten before the blood draw for testing? If you stopped gluten weeks or months before the blood draw you may have invalidated the test results. The blood tests are designed to measure antibody levels from the gut's autoimmune response to the ingestion of gluten. It takes time, weeks or months for...
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