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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
    Hi, Tracy A and welcome to the forum! In general terms, many celiacs have shared your experience in that they have been misdiagnosed for years. It has often been said on this forum that it commonly takes 10 years or more to get a celiac diagosis once symptoms set in. Usually, we are diagnosed with other bowel diseases first like IBS or Crohns. Many doctors...
  2. trents
    @Celiac Gal, In debating an issue on this forum there is no need to be rude to others by the use of sarcasm. I do know what a lobbyist is and I do not work for DiGiorno. The 20ppm figure was arrived at some years ago by the FDA through extensive research and consultation. The point is, 20ppm is safe for the majority of celiacs but not for all. Some...
  3. trents
    I would wait on the biopsy pathology report from the lab before drawing any conclusions. A small amount of damage or a biopsy taken in the case where the onset of celiac disease was recent will not show during the scoping itself. It would need microscopic analysis. Also, many docs doing the scoping may only take one biopsy sample. If the damage is patchy...
  4. trents
    Your lower back and left leg pain would most likely be caused by a nerve impingement in your lower spine I should think. Have you had any scans done? DJD and osteopenia/osteroporosis are common with celiac disease.
  5. trents
    Have you researched anhidrosis and what can cause it?
  6. trents
    Welcome to the forum, Jack! To me, your symptoms scream of vitamin and mineral deficiencies. I would suggest you start taking a high potency B-complex, B12 (sublingual), 5-10k IU of D3 and magnesium glycinate.
  7. trents
    Welcome to the forum, Dtoc! I have not heard of anhidrosis being related to gluten-related diseases. Have you experienced this for many years or is this a recent problem? How long have you known you have a gluten-related disorder?
  8. trents
    Welcome to the forum, MichelleDiane! In some countries, like the UK, there is a government stipend of sorts to offset the expense of gluten free processed foods. Apart from that, the benefits of a formal diagnosis are mainly relational and psychological. For one thing, it's harder to rationalize and make excuses for avoiding wheat products when...
  9. trents
    And I don't think you need a gluten challenge and another scoping. You have all the evidence you need to conclude you have celiac disease. I would also recommend starting vitamin and mineral supplementation with a gluten-free high potency B-complex, sublingual B12, 5-10k of D3 and magnesium glycinate. You described neurological symptoms in your original...
  10. trents
    Well, plumbago must have nailed it. The biopsy was shoddily done and they did not sample enough areas to find the damage. But, as I said before, if the blunting is apparent during the scoping, that is a positive for celiac disease.
  11. trents
    Yes, but you would think that if the blunting was pronounced enough to see it with the scope then it would have to show up upon microscopic inspection.
  12. trents
    The other tell-tale factor here is that when you removed gluten from your diet, your symptoms got dramatically better.
  13. trents
    How can they declare the biopsy to be negative when there was villi blunting? Blunting of the villi is the gold standard of celiac diagnosis. If you had NCGS (Non Celiac Gluten Sensitivity) you would not have blunted villi. And all your symptoms scream celiac disease. And your genetic testing established that you have potential for celiac disease. Your antibody...
  14. trents
    Some of both, probably.
  15. trents
    I think that's probably over the top, George. How long have you been diagnosed as a celaic? The questions you are asking are perhaps relevant if you are among the most sensitive of celiacs but are probably not a concern to the vast majority of them. Have you had enough experience since diagnosis to conclude that you are on the extremely sensitive end...
  16. trents
    Welcome to the forum, Elbee! Sorry, but I don't know of anything that will alleviate your symptoms while remaining on gluten. But the following information might be valuable to you: The Mayo Clinic guidelines for a pretest gluten challenge leading up to a biopsy is the daily consumption of two slices of wheat bread (or the equivalent) for two weeks...
  17. trents
    I don't think that should be an issue, George. Go ahead and enjoy your food. By the way, welcome to the forum!
  18. trents
    Interesting! Does the term "leak" refer to literally to a physical leak?
  19. trents
    Thanks for the update, HectorConvector. So glad you have achieved a major degree of resolution of symptoms. Like you, I cannot do peanuts or tree nuts. I can do eggs if they are poached (the steam hydorlizes the egg protein) if not too many or too often. I suffer from migraines/headaches as the main symptoms of these offenders.
  20. trents
    Yes, it is true that celiacs have difficulty in absorbing B12. But you are not likely to correct the deficiencies you may have with fortified gluten-free flour. There just isn't enough supplementation added to really make much difference. You need to invest in a high potency gluten-free B-complex and sublingual B12 on top of that, and probably D3 and magnesium...
  21. trents
    For asymptomatic celiacs, it would need to be done by lab work of some kind that would reflect a pattern of negligence in their gluten free eating efforts. An episode of glutening here and there would not be detected but a continuing pattern would through lab work to detect antibodies, anemia, bone density loss, etc. - the kinds of things that lad to their...
  22. trents
    Welcome to the forum, lyndze! Can you be more specific about what antibody tests have been done? There are a number of them that can be run to detect celiac disease but it is common for primary care physicians who are not well-informed about celiac disease to just order the tTG-IGA. There are also insurance protocols they have to take into account. Here...
  23. trents
    I still imagine it wasn't the ice cream but something else. You may have, for instance, added another food intolerance.
  24. trents
    Welcome to the forum, Michael Swanson! It's hard to say what is the normal experience when getting glutened since there is a wide range of reaction. I would say, however, that what you describe is very common. But I'm curious. What was the offending ingredient in the ice cream? Did it have Oreo chunks in it or something obviously wheatey? It...
  25. trents
    Welcome to the forum, LibraryLady! Your doctor may be a bit optimistic about your healing rate. Typically we find that it takes around 2 years for full healing of the villous lining of the gut. But, you should start feeling better well before that. My strong recommendation is that you jump start your recovery from nutritional deficiencies with vitamin...
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