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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Unfortunately, your story is pretty common. I think being told "it's all in your head" should be a symptom of celiac disease - it would be a popular one. I first saw the doctor about my "tummy aches" when I was 8 or so. I remember being told that I was just one of those people who gets a stomacah ache ater she eats, and I should have a glass of milk with...
  2. nvsmom
    Wow.... Your doctor is horribly ignorant. Scary ignorant. He did you a HUGE disservice by telling you that you could still eat gluten after such a high positive result. A false positive celiac disease test is virtually always a weak positive test result. In your case that would be a 13 or 14, not a 90 or >250. Yes, false (weak) positives can happen...
  3. nvsmom
    The tTG testsaren't very fast to change and aren't good tests for checking dietary compliance. The deaminated gliadin tests (DGP) would be the most likely blood test to show a single glutening, but that is a pretty slim chance too. Congrats on the ttG coming down! You're moving in the right direction fairly quickly.
  4. nvsmom
    LOL
  5. nvsmom
    I don't know what a hobnob is, so it must be possible. LOL;) Welcome to the board.
  6. nvsmom
    I'm of the opinion that the symptoms of celiac disease become much more noticeable when we are glutened while healthy. Those migraines, bloating, pain, fatigue, and bathroom trips are noticeable when we've been normal for a while. It can wreck a few weeks of our lives. That doesn't sound like a high level of intolerance. It sounds like celiac disease....
  7. nvsmom
    Poor kid. The secrets to good holiday food is to plan ahead. I tend to do a little more cooking than the average so I will have safe food for my family to eat. I make gluten-free stuffing (so the turkey is safe), casseroles, buy gluten-free snacks and pretzles. We make gluten-free gingerbread houses, cookies, squares, brownies and candies. gluten-free...
  8. nvsmom
    Are the hives super itchy? Celiac sometimes (unfortunately) manifests as dermatitis herpetiformis which is a maddening rash. The area beside the rash can be biopsied for celiac disease autoantibodies. I believe those with dh have a higher rate of false negative celiac disease blood tests too, so if it is dh it could be harder to diagnose. Squirmingitch...
  9. nvsmom
    Wow. She's lucky that you are so well educated when it comes to autoimmune diseases. You're saving her a life lived without treatment, and the possible complications that would come with that. A positive of 154 is almost certainly celiac disease. False positive in the tTG IgA only occur about 5% of the time; that test is quite specific for celiac disease...
  10. nvsmom
    My appetite became pretty big after a couple of months too. I'm afraid I'm not sure why. I enjoyed it as much as I could though.
  11. nvsmom
    I'm sorry you didn't get any firm answers. Is your doctor going to add non-celiac gluten sensitivity and possible celiac to your file? It could be helpful to have NCGS as a firm diagnosis and celiac disease as a possible diagnosis. I'm glad your doctor is on board with the gluten-free diet. I hope you recover quickly!
  12. nvsmom
    You might as well get tested. Celiac has over 300 symptoms and disorders associated with it, and that includes neuropathies, and ataxia. Uveitis (floaters) also can co-occur with celiac disease, and should be checked by the eye doctor. Open Original Shared Link Do not go gluten-free before testing because that could cause false negative results. The tests...
  13. nvsmom
    I agree. the deaminated gliadin peptide tests are the newest tests. The DGP IgG is 99-100% specific to celiac disease. There is almost no chance of a positive being caused by something other than celiac disease. The DGP IgA is "only" 93-96% specific to celiac disease. See the Diagnosis Guidelines here: Open Original Shared Link If you are having an endoscopic...
  14. nvsmom
    Ditto.
  15. nvsmom
    I don't know if there is a term for it beyond, really terrible luck. Feel better.
  16. nvsmom
    Steroids can cause a false negative test, but that is the only edication I know of that does. (I could be wrong on that.) Hashimoto's is more likely to cause a false positive tTG IgA is anything. It is one of those autoimmune issues (like T1D, liver disease, crohn's and colitis) which can give a weak false positive. BTW, I have hypothyroidism that is...
  17. nvsmom
    The EMA IgA is not an autoantibody response that first appears. Usually the tTG IgA is positive first - it's unusual that yours wasn't. The tTG IgA starts attacking the villi in the intestines as an autoimmune response to ingested gluten. With that damage, along with the gluten causing further autoimmune response, the EMA IgA attempts to wipe out the...
  18. nvsmom
    I agree. Hang in there and it will get better.
  19. nvsmom
    Hang in there. It will be getting better soon. @squirmingitch I had that crazy hunger too. I ate so much, but I remember losing weight at the same time. I enjoyed that! LOL
  20. nvsmom
    Yes. That's celiac. You have three positive tests. Many people only have one positive test, or just a positive endoscopy. Even though they are not sky high results, they are still positive. I like to compare a positive celiac test to a positive pregnancy test. A positive is a positive even if it is a bit weak. The EMA IgA is about 98% specific to celiac...
  21. nvsmom
    She does sound like a good doctor. Let us know how it goes!
  22. nvsmom
    Yes! My celiac disease caused mild fevers, flu-like symptoms, mouth sores, hair loss, inflammatory arthritis, fatigue, hashimoto's, ITP, cortisol issues, other issues like migraines, and then prediabetes (not sure about that one). I was convinced I must have multiple diseases but it was celiac disease. It tool over 2 years gluten-free before my symptoms...
  23. nvsmom
    Yay!!!! I'm really happy for you! That doctor sounds like a keeper. Let us know how your tests go.
  24. nvsmom
    Welcome to the board, and to you too, Susi V. Keep in mind that a faint positive is still a positive, It still means you have celiac disease. I like to compare weak positives to a weak positive pregnancy test, it still means a pregnancy. If you ignore that faint positive chances are very good that your health will deteriorate. It may not happen immediately...
  25. nvsmom
    That is so true! It's astonishing the wide variety of damage an innocent PB&J sandwich can cause.
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