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trents

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Everything posted by trents

  1. trents
    Vonnie, the way this was presented was confusing to me. "screened 4,24,788 newborn infants" There's a digit missing there somewhere between the first and second commas I believe. "HLA" One or both genes that have been identified with celiac disease potential? "While the rsults of these three studies suggest that one extra clice of bread (about...
  2. trents
    Kyle, you need to read this. Going truly gluten-free is not as easy as most people think when they start the journey:
  3. trents
    Glad to hear you are picking up on the vitamin/mineral supplementation. All of the nutrients from the food we eat is absorbed in the same area of the intestinal track that is damaged by celiac disease. So, development of nutritional deficiencies over time is part of celiac disease and is responsible for many of the symptoms associated with it. NCGS also seems...
  4. trents
    Plenty of people have this pattern. Leading up to the blood draw, had you already begun cutting back on your gluten consumption? Is the tTG-IGA the only test your physician ordered? If he/she had run a "full celiac panel" you might have a more complete picture. The tTG-IGA is considered the best single test for celiac disease in that it combines good specificity...
  5. trents
    You already know that gluten is bad for you because when you stop eating it you get better. The only thing you don't know is whether you have celiac disease or NCGS. But the antidote is the same. Total abstinence from gluten for life. What would change if you tortured yourself by going back on gluten to get tested? The only difference would be that your wallet...
  6. trents
    Good decision. It is nearly impossible to avoid getting "glutened" unless the whole household goes gluten free.
  7. trents
    If it doesn't break down the gluten protein then why would it benefit NCGS people?
  8. trents
    There us currently a study being done on the effectiveness of GliaddinX's main active ingredient: https://clinicaltrials.gov/ct2/show/NCT04788797 . The study was put on the back burner due to the COVID overload of the healthcare system but is due to be complete in December of 2022. docaz is the inventor of the product, a sponsor of this forum and an...
  9. trents
    The most common test run for detecting celiac disease is the tTG-IGA (stands for Tissue Transglutimase Immuno Globlulin Antibody or something similar. There are others that can be run but that is considered the centerpiece. Can you just look at your test results, either hard copy or online, and post them?
  10. trents
    You misunderstand what the purpose of GliadinX is and it's intended use. No one is saying that if you use GliadinX you can eat all the gluten you want. It is designed to provide some measure of protection against minor amounts of gluten such as you might get through cross contamination when eating out. And your statement, "enzymes don't work for celiac disease...
  11. trents
    You said, "I had to demand attention from my doctor and FINALLY got a blood test for Celiac, the results of which, according to the doctor, was 'off the chart'". And you also said, " . . . as I understand there is a very good and clear blood test to diagnose - right?" Sounds like you already had that done. What exactly was the test that was "off...
  12. trents
    So what is the change? The chart indicates that adults 55 and over, with 10x or greater than normal levels of tTG-IGA, need to be referred to a GI doc for a gastroscopy before being given a celiac diagnosis. If anything, this seems to be a regression. Is there a change for younger people only, then?
  13. trents
    "In any case they have to do my colonoscopy due to age - there is a true way to confirm and rule out celiac for good at that point and I think my doctor is inclined not to have me eat gluten and do biopsy … what was the point of all the other tests then, they are not all accurate now either. That is if I understand how the few actually can measure with t...
  14. trents
    Lindz, I cannot answer definitively whether spacing out your gluten consumption over a day as opposed to a larger amount at one time will affect the testing. Intuitively, however, I would think the pain you experience from eating a large serving reflects a more intense inflammatory reaction and would be better for the testing. Having said that, you need...
  15. trents
    Welcome to the forum, Erin! Your post was a little confusing and it is not clear to me if your doctor has run the serum antibody tests that are specifically designed to detect celiac disease. Here is a primer for the tests that can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ Many doctors will only run the...
  16. trents
    It would be nice to know the actual numbers though. I know in the UK they don't grant you celiac status (without further testing) until your antibody levels are 10x normal, which I think is an excessively high bar for all practical purposes.
  17. trents
    But what is the reference range? The raw number does us no good unless we know what reference ranges the lab uses to determine negative/positive. I think I asked for that in the fist post.
  18. trents
    Welcome to the forum, LindzeLindz! Your pictures did not come through, by the way. First of all, unless you are eating gluten containing grain products regularly, serum antibody testing may be invalidated. The Mayo Clinic guidelines are the daily consumption of the equivalent amount of gluten found in two slices of wheat bread for 6-8 weeks leading...
  19. trents
    What tests were run to diagnose her condition? Can you post the test results along with reference ranges indicating what is negative and what is positive with regard to the standards used by that lab. Different labs use different standards.
  20. trents
    The hardest one for me has been developing an intolerance to eggs. I love eggs and have eaten them all my life. Now, I can still eat them in baked goods and have one for breakfast every few days as long as it's poached and I'm okay. But I can't eat more than one egg at a time and I can't eat them daily. I seem to tolerate them better when they are poached...
  21. trents
    It is certainly possible for someone to both have celiac disease and also be allergic to wheat. I think your idea to postpone the comprehensive celiac panel is a wise one. Those of us who have been coping with gluten-related medical conditions for years can attest to the fact that the medical community at large is pretty ignorant about this particular...
  22. trents
    Yes. You could have NCGS (Non Celiac Gluten Sensitivity). It shares a lot of the same symptoms with celiac disease, including neurological problems, and is 10-12x more common than celiac disease. There currently is no way to test for NCGS but to first rule out celiac disease. The antidote is the same, namely, elimination of gluten from the diet for life. ...
  23. trents
    Hmm. Neither celiac disease or NCGS (Non Celiac Gluten Sensiitvity) are allergic reactions. We don't know what is the immune system pathway engaged by NCGS but we do know that celiac disease is an autoimmune disorder and not an allergy. So, not sure that your allergist was qualified to answer your question. NCGS has many of the same symptoms as celiac disease...
  24. trents
    Then I would question whether or not your antibody test scores are reliable. As I see it, you have a choice. You can start eating regular amounts of gluten for about two months and get retested . . . or . . . commit to eating truly gluten free and assume you have either celiac disease or NCGS. The Mayo Clinic guidelines for a pretest gluten challenge...
  25. trents
    You misunderstand what I was asking. Whether or not you ate anything immediately before the blood draw is irrelevant. I mean, were you attempting to eat gluten free in the weeks or months before the blood draw?
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