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beachbirdie

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Latest Celiac Disease News & Research:

Everything posted by beachbirdie

  1. beachbirdie
    Wow. Just. Wow. It would be awesome to see this in practice! So much suffering in people who are sick but diagnostic methods miss them. Thanks for posting!
  2. beachbirdie
    I agree with Skylark. Your TSH is a little higher than the level at which most thyroid patients report feeling okay. Hopefully your T3 and T4 tests will be revealing. It is good that your doctor is looking at your reverse T3. Docs don't usually do that. Reverse T3 is created when the "wrong" iodine atom is stripped from the T4 molecule, and the chemical...
  3. beachbirdie
    I am wondering what specific bloodwork was done? I don't see mention of celiac blood tests. It is possible also that you are non-celiac gluten intolerant. It is a very real syndrome which causes discomforts/symptoms like celiac, but does not cause the damage.
  4. beachbirdie
    Beautifully said, Kelleybean. It seems almost criminal to hold back what these kids need when they can do so much with the right environment and the right kind of help. That sticks with me from the movie I mentioned, and it is the name of a book..."Different, not less". I am so glad you were able to do what you did for your son and that he is doing...
  5. beachbirdie
    My husband and I just watched a phenomenal movie yesterday called "Temple Grandin" about the life of an autistic woman who went on to do amazing things in her life, and even those without one. I highly recommend this inspiring film! It will encourage anyone with an autistic person in their life! Temple was born in 1947, a time when autism was still blamed...
  6. beachbirdie
    It's a little-known secret that TSH can vary several points during the day. I do not manage my thyroid by TSH but by symptoms, and Free Thyroid Hormone levels. I am generally suppressed, with a TSH averaging .03. TSH is NOT a thyroid hormone and if you are taking thyroid meds your docs should manage your dose using Free T3 and Free T4 because the supplemented...
  7. beachbirdie
    I would only be guessing, but would guess that the transglutaminase is the TtG IgA. They almost never do the TtG IgG. Both the TtG IgA and the anti-EMA are pretty specific for celiac.
  8. beachbirdie
    Yes. They should have done a Total Serum IgA. One test does not alone a diagnosis make. What symptoms are you having?
  9. beachbirdie
    A colonoscopy does not tell you anything about celiac disease. If the endoscopy has been completed, there is no need to delay a gluten free diet. If the doc is trying to comfort you somehow by telling you that there is no visible damage, that is not right. The only way to see damaged villi is at the microscopic level. Can you post the exact names of...
  10. beachbirdie
    What tests did they do? If they didn't do enough tests, they might have missed something. Some docs only test one or two things and then they stop. The other thing is, you might be non-celiac gluten sensitive. You will react badly to gluten, but not necessarily produce antibodies or get intestinal damage.
  11. beachbirdie
    As others have said, you did not receive adequate testing. There are several tests they should have done, I am very much opposed to the "cascade" method. They miss a lot of people that way and cause so much unnecessary cost and suffering! I just got testing that had me in a similar situation to Cara's child, my only positive test is one that doesn't usually...
  12. beachbirdie
    I went back through some older posts to refresh myself on what's going on with you...when is your Mayo visit? I sure do hope that they are able to get to some real answers for you and help you find a path to healing. You've got a lot going on.
  13. beachbirdie
    I don't know anything about Kaiser's celiac testing, but I do know you need to keep eating gluten if you are going to have the biopsy. If you go off gluten, you will get a less accurate result. The best way to interpret the lab results it simply to look at your result within the context of your lab's ranges. Every lab is different, and so a result from...
  14. beachbirdie
    I'm willing to go through the scope, just for the research factor for the rest of my family. It will make it easier for my kids and my mom if we have complete information. I sure don't need it to know I need to be gluten free! After 5 days off of it, I am not having abdominal pain for the first time in months. I don't get any of the classic GI symptoms...
  15. beachbirdie
    Thanks much! As always, I appreciate your thinking. I guess the possibility is there to have damaged villi since I also have the DQ2. From reading around the 'net, it seems the only other specific disease associated with the IgG is Crohn's, and I know I don't have that after colonoscopy. I'd like to assume it's the Hashimoto's, and guess it's a good sign...
  16. beachbirdie
    Well, my doc did a celiac test last fall and didn't test all the antibodies so I went and got another test this month after glutening up lightly (2 breads a day) for about 6 months. Negative on most, but POSITIVE on my TtG IgG. Are these the TtG antibodies that can be related to ANY autoimmune condition? Or is what the lab paper says (these are an...
  17. beachbirdie
    You can use the "add reply" button at the very bottom (next to the "preview post" button) or at the very top of the page. If you use the quoted reply button, you can just go back and delete everything in between the quote commands. You'll see "quote" and "/quote" in square brackets at the beginning and end of the quoted portion which is at the very...
  18. beachbirdie
    Thank you so much for that! You have helped me greatly and made it very understandable.
  19. beachbirdie
    We've always been careful about what we bring into the home. I don't think avoiding gluten is any worse than avoiding sugars, etc. We don't use convenience foods, we don't use soda pop, we eat very little fast food. My kids are young adults now and don't show signs of feeling deprived. They were allowed occasional departures into "junk". We did...
  20. beachbirdie
    Have your doctor test both your total IgA and total IgG. You could (though it's rare...one in 60,000 to one in 100,000 depending on who you ask) have an immune condition that damages villi in the same manner of celiac, but does not respond to a gluten-free diet. A shot in the dark, but tests are not that expensive and it could be an answer. Were you...
  21. beachbirdie
    That would likely depend one what lab is doing the work. Do you know? Your doc's office should be able to tell you that if they can't tell you the components of each test. Be watchful of them, some of them do what is called a "cascade", meaning they test one pertinent component...if it is negative, they don't bother doing the tests that follow. You...
  22. beachbirdie
    I'm so very sorry for your loss. I hope you receive comforting information from your own tests.
  23. beachbirdie
    No, she doesn't take medication of any kind.
  24. beachbirdie
    I am betting (and hoping) that mom's bloods *are* false negative, I agree that scoping will be just too much for her. We're taking her gluten free, and if she'll tolerate it we're putting her on GAPS/SCD. I agree there too, I think gluten is a dangerous thing! I am hoping that the diet will also bring her multiple myeloma markers down. I just read her...
  25. beachbirdie
    Blood testing may not be useful when multiple myeloma is involved. MM can depress the immunoglobulins, as I just found out with my mother. She is very low in serum totals of both IgG and IgA, which renders any celiac testing invalid. If your gma had a positive biopsy, she should be gluten-free. As the study says (the one quoted on this site), 30 or...
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