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trents

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Everything posted by trents

  1. trents
    Ha, Ha, Hee, Hee! Good one! 😅
  2. trents
    Welcome to the forum, Donnaw61! Getting an official diagnosis is not necessary and I believe you know the answer anyway. An official diagnosis may have the advantage of doctors taking you seriously and not viewing your claim as simply another self-diagnosed not case, if you know what I mean. Many physicians still do not take celiac disease seriously...
  3. trents
    If you stop and think about it, both the antibody test and the biopsy are looking for damage to the villi, just in different ways. If you go off gluten pre test then the damage stops and healing begins. Unfortunately, many physicians fail to caution their patients about not quitting gluten before the testing is complete. We get this same report from new...
  4. trents
    The official recommendations for the pre-testing gluten challenge are: For the blood antibody test: Daily consumption of an amount of gluten equivalent to 2 slices of wheat bread for 6-8 weeks. For the endoscopy/biopsy: Daily consumption of an amount of gluten equivalent to 2 slices of wheat bread for at least 2 weeks. I take it from...
  5. trents
    Whatever you do, don't start in on a gluten free diet until your testing is complete, regardless of whether it is the blood antibody testing or the endoscop/biopsy. It will likely invalidate the testing if your do. Continue to eat regular amounts of gluten until all testing for celiac disease is complete.
  6. trents
    Yes, I'm not sure it's worth it either. I don't suffer from DH but from reading the stories of those who do it seems to be misery. I can tell you that after years of living gluten free I no longer have any tolerance for it. If I get a significant gluten exposure I get violently ill. It would probably put me in the grave if I had to go back on gluten to get...
  7. trents
    Of course, getting an official diagnosis would require you to go back on regular amounts of gluten for 2 (intestinal biopsy) to 8 (antibody test) and that would be a huge deterrent. Although in the case of DH they might be able to do a dermal biopsy during an outbreak and prove that you have DH for which celiac disease is the only cause. Not sure how that...
  8. trents
    I can't disagree with your reasoning except that having an official diagnosis of celiac disease and DH might give you more leverage in medical care situations related to the effects of celiac disease and DH. If there is not an official diagnosis you might find resistance from many physicians in exploring issues related to your celiac disease/DH. Is there...
  9. trents
    There is research that indicates the protein casein in dairy produces villi blunting and antibodies like gluten does for some people. If your son does not show improvement within a month I would look at some other cause. I'm not saying that there can be complete healing of the villi in a month but there should be improvement of symptoms.
  10. trents
    As an adult I have had three endoscopies done and none were painful in anyway. The hospital used conscious sedation. I'm not sure if they do that with kids.
  11. trents
    No, it is not necessary when the antibody tests numbers are strongly positive. The tTG-IGA test is very specific for celiac disease. There is some argument to be made for going through with the endoscopy/biopsy in that it would provide a baseline for gauging healing of the small bowel down the road after embarking on a gluten-free diet. But that would...
  12. trents
    I believe that is true. The antibody blood test is testing for antibodies produced by the immune system attacking what it perceives to be an invading threat to the small bowel lining when gluten is ingested.
  13. trents
    DH is a classic expression of celiac disease that afflicts some. If it turns out to be DH then the fact is there is no other cause of DH known besides celiac disease. Celiac disease can manifest itself in the skin or in the gut or both. Many people who have villi damage in the small bowel experience little or no GI distress, at least until the damage becomes...
  14. trents
    What do you mean by "and having celiac would be so random"?
  15. trents
    You could join the George W. Bush anti broccoli club! Ex U.S. president George W. Bush was criticized by the Broccoli Growers Association because he said he didn't eat broccoli. His response was, "Listen! I'm the president of the United States of America and if I don't want to eat broccoli I don't have to!"
  16. trents
    It could be from dehydration but not necessarily. My chills come on well before I get to the dehydration point. I think chills can be a reaction to any number of things. When I get nausea I get sweaty and the chills could just be due to rapid surface temperature drop from evaporation. Or, some other physiological mechanism that is coming into play like infection...
  17. trents
    Yes, I forgot to mention that when this happens to me I also get chills.
  18. trents
    It is likely to happen once in a while no matter how scrupulous you are about avoiding gluten. One of the best ways to avoid accidental glutening is to have everyone in the family commit to eating gluten free and then purge the entire kitchen and pantry of everything that is not gluten free. Also, avoid eating out like the plague.
  19. trents
    What your gastro doc said makes sense. It is also possible that the biopsy samples he took were from areas not yet affected. Villi damage can be patchy and some docs don't reach into various areas when taking the samples.
  20. trents
    No. I don't see how I could keep anything on my stomach during such times to serve as a remedy. It would have to be something injectable or IV.
  21. trents
    I'm guessing you have NCGS (Non Celiac Gluten Sensitivity) and after four days you got "glutened" somehow. The symptoms of NCGS are largely the same as celiac disease but there is no damage to the villi, hence there would be no antibodies produced and the biopsy would also be negative. There is quite an education curve in learning to eat gluten free and typically...
  22. trents
    Your daughter's experience is exactly mine. If I get a gluten exposure when eating it takes about two hours for me to start vomiting and it lasts for 2-3 hours with severe gastritis and cramping. When this passes I then get diarrhea for about the same amount of time. Remember, with celiac disease, the body is interpreting gluten as a toxic invader and is...
  23. trents
    I'm glad I'm not raising teenagers anymore!
  24. trents
    Thank you for the additional information. I probably read too much into your comment about there being no way to avoid gluten when your daughter is at school and I did not realize until you explained this that she was so extremely gluten sensitive. Sounds to me like she may also be allergic to wheat. But I can't help but wonder if something else is going...
  25. trents
    Welcome to the forum, AlohaMaMa! First, many celiacs have issues with dairy products. Either the sugar in milk (lactose) or the main protein component (casein) can be a problem. In addition, research has shown that in some celiacs, casein blunts the villi of the small bowel very similar to what gluten does. Second, it is well-known by the celiac...
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