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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
    Yes, it does make sense.
  2. trents
    Are you aware that the food labels "Gluten Free" and "Certified Gluten Free" are not equivalent? And are you aware that neither of them actually mean there is no gluten in the product, just that the gluten level is below a certain level? Gluten Free is an FDA designation indicating there should be less than 20 ppm of gluten and Certified Gluten free is a...
  3. trents
    I might suggest taking a bullet list with you to your next appointment with concisely worded symptoms and test requests. That would cut to the chase and economize the time you do have with the doc.
  4. trents
    CeeBee, you might find this interesting and even share it with your doctors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868701/ I hope you aren't insulted by this comment, but I have gotten the definite impression from following many postings on this forum that your healthcare system there in the UK is rather inflexible when it comes to ordering diagnostic...
  5. trents
    Welcome to the forum, @CeeBee1807! Essentially all of the symptoms you list are classic celiac disease symptoms. By the way, what eventually led to my own celiac diagnosis was elevated liver enzymes. Judging by some of the terms you employ (gastroscopy, nan) and the protracted wait times for scheduling procedures within your healthcare system, I...
  6. trents
    One important blood test that was not run in connection with your testing for celiac antibodies is what we commonly call "total IGA". If one is IGA deficient, individual IGA antibody test scores, such as the ttg-IGA can be falsely negative: See the section entitled, "IgA Levels/Deficiency Blood Test" from this article:
  7. trents
    Welcome to the forum, Cassie! That was one long sentence! A few periods stuck in here and there would have made it a little more readable. You must have composed it on hour phone. Yes, the biopsy was probably made invalid because you had been on a gluten free diet. The biopsy looks for the damage caused by celiac disease to the lining of the small bowel...
  8. trents
    How long has this been goin on? May we ask your age? What you describe sounds like it could be gluten-induced neurological damage of some kind which may not be detectable by testing designed to diagnose other kinds of neurological disorders. And it may not be completely reversible. What is noteworthy is that your symptom list became longer when you went...
  9. trents
    Grains are high in plant defense chemicals known as lectins. Lectins are not well-tolerated by many in the celiac community.
  10. trents
    Yes, by all means, get another doc. Believe me, the ignorance about celiac disease in the medical community sometimes amazes me! Some of them treat it as if it were the latest "fad" diagnosis. It is getting better but there are a lot older docs, even GI specialists out there, who are operating on very outdated notions concerning celiac disease.
  11. trents
    Keep in mind that if you decide to get any repeat testing done for celiac disease, whether it be blood antibody testing or endoscopy/biopsy, those tests are invalid if you are already on a gluten free diet. If you start a gluten free diet at some point as an experiment, you would need to go back to eating generous amounts of gluten (the amount in approximately...
  12. trents
    Welcome to the forum, @beyondbabs23! Your post is confusing. You typed, "They ran a Celiac blood test, ESR, CRP and fecal calprotectin test. All were negative but they state Celiac was positive and needed EGD." It is not true that all your celiac blood tests were negative. The Deamidated Gliadin Abs, IgG (aka, "DGP-IGG") at 41 is positive and that is...
  13. trents
    Chrissyjo, here is an article outlining the various blood tests that can be used to check for celiac disease: Many physicians will only order the ttg-iga test. It is the single best blood test tool for celiac diseae and relatively inexpensive. However, it is not a good choice if a person is IGA deficient and many physicians neglect to check for that...
  14. trents
    The Immunoglobulin A is aka "total IGA" and it is not deficient at 90. Tissue Transglutaminase AB, IGA, aka "ttg-iga" is the most popular celiac antibody test run as it is inexpensive and combines excellent sensitivity with very good specificity. It is typically the first blood test tool out of the physician's diagnostic bag and the best single one in...
  15. trents
    Yes, it would mean that the wheat starch contains less that 1% gluten. Gluten is not the only protein in the wheat kernel: https://engrain.us/understanding-wheat-protein-content/ It sounds like to me you have a good handle on the variables and hence the questions. The only way to nail this down any further would be to have the starch in question tested...
  16. trents
    Welcome to the forum, @Chrissyjo! Can you be more specific about which blood test or tests were done most recently for celiac disease? Do you have documentation to refer to or online access to your medical tests? There are a number of blood tests that can and should be run for celiac disease and many physicians are not well versed on which to run to...
  17. trents
    The importance of determining whether or not your daughter has celiac disease as opposed to NCGS in relation to cross contamination may be a false paradigm. There seems to be this assumption out there that if you have NCGS you don't have to be as careful in avoiding gluten as you do if you have celiac disease. We now know that gluten can be harmful in many...
  18. trents
    Yes, it is certainly possible that you did the scope before damage was done to the small bowel villous lining. With children, the damage to the villi seems to lag behind the symptoms and their positive antibody tests. Their bodies are so resilient and I think it is also true that most adults have the onset of celiac disease long before the symptoms get bad...
  19. trents
    Welcome to the forum, Inwalser96! Studies show that eating out is the #1 way to sabotage the gluten free diet. You may order stuff that is gluten free but you have little or no control over how it is cooked and handled back in the kitchen to prevent cross contamination. Our administrator, Scott Adams, tells the story of ordering gluten free pasta at...
  20. trents
    Helen, you may know this already but your post above was confusing in this regard. Blunted villi would refer to what is found by endoscopy and biopsy of the small bowel, not the stomach. And to say that the biopsy was normal despite having blunted villi is a contradiction unless, that is, the biopsy referred to was of the stomach and not of the small bowel...
  21. trents
    Then get home to be "crook" for days after. N00dnutt, is that a typo or an downunderism?
  22. trents
    Welcome to the forum, @Tracey Thomas! Can you be more specific about the the blood test that was done for celiac disease? There isn't just one that can be run so it would be helpful to know which one or which ones were run to get an idea if others should have been run that weren't. Here is an article to help you understand what I'm talking about: In...
  23. trents
    I think you may be confusing lectins with lecithins: https://www.verywellhealth.com/lecithin-benefits-and-nutrition-4771091
  24. trents
    That's the highest ttg-IGA value I have ever encountered and I've been participating on this forum for many years. Tell us more about what led you to get tested. What symptoms were you experiencing? With those high ttg-iga numbers I would expect your small bowel lining to be pretty well trashed unless your celiac disease is of very recent onset.
  25. trents
    I nearly always get hungry right before bedtime as well. I think I've kind of gotten into a habit of snacking before bed so my body expects it. I've also found that eating a few Simple Mills gluten free almond crackers or something similar takes the edge off so I can sleep. But if I try to ignore the hunger I have a hard time getting to sleep.
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