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trents

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Everything posted by trents

  1. trents
    Welcome to the forum, Cody! Have you been tested for celiac disease? You don't say so but the fact that you are posting on a forum for celiac disease makes me think you are suspecting you may have it.
  2. trents
    Welcome to the forum, Meena! Sounds like you have been diagnosed by some doctor as having celiac disease but without proper testing for the disease itself. The first stage of testing would involve blood tests that look for specific antibodies produced by celiac disease. Here is a primer on the blood tests for celiac disease: https://celiac.org/about...
  3. trents
    Welcome to the forum manfrdy! First of all, if you have already begun the gluten free diet effort your serum antibody test results will likely not be valid. The pretest gluten challenge guidelines for serum antibody testing are daily consumption of gluten in the amount equivalent to two slices of wheat bread. Here is a link outlining the antibody...
  4. trents
    "The catalyst" or "a catalyst"?
  5. trents
    Diane, are you still getting phlebotomies to siphon off excess iron? You say the iron levels eventually normalized after several phlebotomies but it's not clear from your post if it remained that way after going gluten free.
  6. trents
    Amy, your post is confusing as to the chronology of when you were eating regular amounts of gluten prior to and after testing. You say you are "still in the testing phase" but you apparently went gluten free at some point but then went back on gluten after a long time of being off gluten and didn't get sick. The guidelines for valid testing are to have...
  7. trents
    Mommacos, welcome to the forum! Sometimes celiac disease manifests itself dermally (skin) rather than enterically (gut). Unless there is inflammation in the gut, your serum antibody tests will be negative. Having said that, can you take a closeup picture of your rash and post it here. DH has a distinctive look to it and one of the defining characteristics...
  8. trents
    That's fascinating! Thanks for sharing this. As time goes on we are discovering more and more medical issues related to celiac disease that no one would ever have suspected. An unhealthy gut makes for an unhealthy body.
  9. trents
    Par for the course. Most physicians don't know any better. They are not knowledgeable about celiac disease.
  10. trents
    Usually, the blood work is done first since it is non invasive and cost efficient. As RMJ said, 6-8 weeks of consuming gluten daily in the amount equivalent to two pieces of wheat bread.
  11. trents
    Ruu, so I understand you to say that you have a biopsy coming up soon? If it is positive then you have a firm answer. If not, the only other course of diagnostic action would be to commit to going gluten free and see if your symptoms improve over a period of weeks or months. If they don't, gluten is not the problem and you can look elsewhere. Just take one...
  12. trents
    Actually, that is not true, strictly speaking. There are two primary manifestations of celiac disease, classically speaking that is. One is small bowel lining inflammation/villi blunting and the GI distress that typically (but no always) accompanies it. The other is dermatitis herpetiformis (DH). Typically, people have one or the other of these classic manifestations...
  13. trents
    You have had that test and hopefully caught the disease at an early stage before you have experienced prolonged inflammation/damage to the small bowel villi and the health problems that ensue from that. If you want confirmation that you have celiac disease or not, you would need to go to the next step of diagnosis which is the endoscopy/biopsy. This...
  14. trents

    Confused and upset

    trents replied to Belll's topic in Doctors

    Your experience is not uncommon, believe me! Many doctors, especially older ones are not knowledgeable about gluten-related medical problems. They are relying on very old information from their medical school training when it was thought that celiac disease is a very rare condition than affects only about 1 in 5000 people. Today, we know that the number is...
  15. trents
    Some celiacs show atypical serology results and that's why it can be necessary to run the full celiac panel rather than just the tTG-IGA. Your total IGA at 226 is not low. Low total IGA can skew the celiac antibody tests toward the low side. My suggestion would be to either: 1. Go back on gluten daily for 6-8 weeks and be retest for celiac serum antibodies...
  16. trents
    https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ Read the sections, "The First Step: tTG-IGA" and "Other Tests." If you were not eating normal amounts of gluten for 10 days leading up to the serology tests then the results may not be valid. Again, can you post the specific tests, their numbers and the reference ranges for...
  17. trents
    I doesn't matter which meal during the day you consumed gluten. And missing a day or two of gluten leading up to the serology test probably won't make much difference in the results as long as your were consuming two slices of wheat bread or the gluten equivalent most of the days for at least 6 to 8 weeks prior to the test.
  18. trents
    Yes, we have had a number of forum participants report negative serology testing but positive biopsy. But two questions need to asked at this point. 1. When you had the antibody testing done, were you already on a gluten free diet? 2. Exactly what antibody tests were done? Can you post the results with reference ranges? Many doctors will only do...
  19. trents
    They don't tell you these things because either they don't know enough to do that or they are skeptical about celiac disease in general and don't think it will make any difference.
  20. trents
    Gastritis and GERD commonly occur in conjunction with celiac disease. Depending on the severity of the villi damage, the resolution of the scope used and the experience of the one doing the scoping, damaged villi may not be visible using an endoscope. The lab will look at the biopsy under a microscope.
  21. trents
    I would add to that a high potency, gluten free B-complex. But if you are having vitamin levels checked you need to be off of vitamin supplements for at least two weeks. Some deficiencies are masked when you are on supplements.
  22. trents
    Have you been tested for celiac disease? Either with blood antibody tests that are specific for celiac disease or by biopsy of the small bowel lining? I would also suggest you look into histamine intolerance and SIBO.
  23. trents
    Most celiacs develop intolerances to other, non-gluten, foods over time. It can be almost anything but dairy seems to be the most common culprit. Developing an intolerance to eggs is not uncommon. About 10% of celiacs react to oat protein the same way they do wheat/barely/rye.
  24. trents
    DH is one of the classic manifestations of celiac disease but your blood test does not indicate you have celiac disease. So maybe your rash is something else. On the other hand, we sometimes see negative antibody test results when people actually do have celiac disease. Specifically, what celiac antibody tests did your physician run? Many will only run...
  25. trents
    Wrong! The add is not for Gliadin but GliadinX. "X" as in taking it out.
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