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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
    Welcome to the forum, Katie255! Believe me, your reaction to the news given to you by the physician is a very common one. You are not alone. Your antibody test score is, I think, the highest I have run across. However, it is not necessarily the case that high numbers equate to a more serious problem. If you are not experiencing GI distress that...
  2. trents
    That's no surprise - given the huge amount of ignorance surrounding celiac disease, even in the medical community. That's why it typically took a decade or longer for many of us participating in this forum to have gotten a diagnosis.
  3. trents
    Of course, the main risk associated with any immune system suppressing agent is that it increases the risk for developing other infections and even cancer. They all, more or less, are a shotgun approach to fixing the problem. But let me ask you. Is your celiac disease (and that of other family members with celiac disease) well controlled? Are you and...
  4. trents
    There is 3rd party genetic testing trough companies like 123 and me and I think it costs arund $200 US. There is also 3rd party antibody testing through companies like Imaware which costs about $100 US. But of course, the antibody testing would require a gluten challenge.
  5. trents
    Ruth, my thoughts are that it is imperative that you and your family get control of the ulcerative colitis so whatever you must do to accomplish that is probably worth the risk. But there is one issue with some of those immune system suppressing agents you really need to ask about and that is, "Once I start, will it be possible to discontinue the med at some...
  6. trents
    When try that link, this is what I get: CKS is only available in the UK The NICE Clinical Knowledge Summaries (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories. CKS content is produced by Clarity Informatics Ltd (trading as Agilio Software | Primary Care). It is available to users outside the...
  7. trents
    From the study you linked: "Inasmuch as ALSPAC is an observational study based on analysis of anonymous samples, these children could not be individually identified and referred for confirmatory biopsy and treatment." Huge difference here in methodology between the study you linked and the one Wheatwhacked and I refer to. The one WW and I refer...
  8. trents
    In what sense? Their effectiveness? Side effects? Are you or is someone in your family already using this therapy or are you just considering it?
  9. trents
    Welcome to the forum, RuthWill! Is your concern here that the injections might not be gluten free?
  10. trents
    I don't know that there is anything we can tell you that you don't already know. Any antibody testing for celiac disease would require you to be eating significant amounts of gltuen (equivalent to two slices of wheat bread daily for 4-6 weeks and an endoscopy with biopsy would require eating that same amount of gluten for two weeks leading up to the procedure...
  11. trents
    Welcome to the forum, ElPositivo! Several things: 1. Studies show that most people who claim to be eating gluten free are in reality eating a lower gluten diet because they aren't accounting for CC (Cross Contamination) and/or aren't aware of the myriad of ways gluten sneaks into our food supply. It's not enough just to eliminate the major sources...
  12. trents
    Russ H, as I recall from that study, half of those first degree relatives who were tested were asymptomatic.
  13. trents
    Welcome to the forum, Boswell5711! The pattern of symptoms you describe aligns very well with pediatric celiac disease or at least NCGS (Non Celiac Gluten Sensitivity). Your next step should be to get an antibody test done for celiac disease. It's a blood draw that is then sent to a lab and tested. Make sure you ask for a "full celiac panel" as...
  14. trents
    I find that a little hard to believe since rice is not grown in the same environments as is wheat. Of course, there is always CC from processing, but 30%? I have never had a problem with cooked rice.
  15. trents
    Oxalate levels can be difficult to determine and I see wide disagreement on what are high oxalate foods and what are not. Compare these two articles: https://www.nutritionadvance.com/high-oxalate-foods/ https://foodfornet.com/oxalate-rich-foods/ Nothing you list can compare to the oxalate levels found in spinach, chard okra and some other green...
  16. trents
    Unfortunately, when living in a household where others are still consuming gluten there is a much greater chance of CC. Extra precautions need to be taken to prevent it from happening. Separate toasters, strict attention to dish washing, shared measuring cups and spoons, etc. The other thing you should be aware of is that a couple of large recent studies...
  17. trents
    Yes, when we do go off gluten we do become more sensitive to it. We begin to lose whatever tolerance to it we had developed from making our bodies try to cope with it. Your experience of seeming to regress in how you feel is most common. We hear it all the time on the forum. It's probably a combination of things: 1. Still getting some gluten through CC (Cross...
  18. trents
    Dairy sensitivity/intolerance can be due to either lactose intolerance or casein intolerance. Casein is the main protein in dairy while lactose is the sugar component. A lot of people assume the problem is lactose intolerance when it may actually be casein intolerance. There is another protein found in dairy called whey and it is a very high quality, complete...
  19. trents
    I don't do nuts well anymore either. With celaic disease, you can expect to develop other food sensitivities/intolerances because of the leaky gut that goes along with celiac disease. Larger than normal protein fractions from various foods leak through the gut lining into the blood stream where they can be interpreted as invaders by the immune system. But...
  20. trents
    GfreeOH, the presence of villous atrophy is the gold standard for diagnosing celiac disease. I would not bother with any more testing and just begin focusing on achieving the gluten-free lifestyle.
  21. trents
    GfreeOH, do you know exactly what serum antibody tests were run? Often, doctors will only run the tTG-IGA. That will miss 20% of people who are confirmed to have celiac disease by biopsy. It is much better to run a "full" celiac panel that is comprised of several different antibody tests. What one misses, another may catch.
  22. trents
    The tTG-IGA at 102.1 is a clear, unequivocal positive. This particular antibody test is the most common one ordered by physicians. It combines good sensitivity with good specificity. With a score like that on that test the odds of you not having celiac disease are very low. The endoscopy with biopsy of the lining of the small bowel is used for confirmation...
  23. trents
    Just a wild idea, here! Could it be that an ingredient has become rancid or spoiled?
  24. trents
    Welcome to the forum, Lynne Marie! In your first post you indicated you had a question but you never actually stated what it was. What is your question? So, you have the genetic potential for celiac disease and you have classic symptoms. I would assume you have celiac disease as opposed to NCGS (Non Celiac Gluten Sensitivity). However, since returning...
  25. trents
    Starting the gluten-free diet weeks or months ahead of time might not invalidate antibody testing for someone whose antibody levels are extremely high but for those whose antibody levels would be modestly positive if tested while still consuming gluten, it would likely drop them out of positive range. And different antibodies vary tremendously in their...
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