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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
    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...
  2. 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...
  3. 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?
  4. 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...
  5. 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...
  6. 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...
  7. 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.
  8. 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.
  9. 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...
  10. 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.
  11. 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...
  12. 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...
  13. 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. ...
  14. 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...
  15. 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...
  16. 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?
  17. trents
    Welcome to the forum, LGillette! Immunoglobulin A Quant 185 mg/dL 87-352 . . . This is reporting the total IGA count. The importance of this is to make sure you are not getting false negatives on the individual antibody tests. If total IGA is low then it will give lower values, to say, the tTG-IGA test with the possibility of a false negative. T...
  18. trents
    Yes, you would need to resume eating gluten for 6-8 weeks before the test. The equivalent of two slices of wheat bread daily. Those are the Mayo Clinic guidelines. The serum antibody testing is designed to detect inflammation markers produced by the ingestion of gluten. If you haven't been ingesting gluten for a long period of time the inflammation will have...
  19. trents
    If this is Palm Beach, FL I would think there is a large enough population base in the general area to make it a reasonable undertaking. There have to be many other celiacs in her age group. How old is she?
  20. trents
    Not really. It could just mean that you caught it early (if indeed it is celiac disease) or for whatever reason your body isn't producing a strong inflammatory response to gluten. If it turns out you do have celiac disease I think you might have something else going on at the same time causing the RUQ pain. The GI doc doing the scoping will look for other...
  21. trents
    Do you see any relationship between the periods of URQ stomach pain and what you eat? Have you had an upper GI to check for things like peptic ulcers? URQ is also the general area where the gallbladder is located. Have you had an utlrascan or a hidascan for gallbladder disease? By the way, an upper GI (endoscopy) is what they use to check for the...
  22. trents
    I'm guessing there was just a mistake made by the physician looking at the results. Still, you have two elevated antibody levels, one iga and one igg, that would point to celiac disease. Why were these tests run? What symptoms do you have?
  23. trents
    Routine testing for celiac disease of children entering school is being done in Italy and perhaps other European countries. The problem with that is that you can develop celiac disease at any stage of life. So testing school-aged children will still miss a lot of people. The other problem with it is that children's immune systems are immature so there may...
  24. trents
    Perhaps the camp will lead to fruitful contacts. Does she live far from you? Is there a possibility that her parents could start a local support group for her age group?
  25. trents
    Do you mean your government eliminated lithium?
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