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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    Greenbeanie, just curious, did you do a blood test at the end of your 6 weeks as well? Have you gotten the results, if so? I had some other blood work done recently that showed very high lymphocytes, which are associated with autoimmune disorders. I'm wondering if my inflammation was still high after 9 months gluten free, or if it was related to something...
  2. greenbeanie
    Hang in there! I just finished a gluten challenge myself (and had my endo last Friday - waiting for results). It was a really awful six weeks, but it's SO nice when it's finally over. In those six weeks I got dozens of new grey hairs (and I'm only 37), then my hair started falling out in the shower every day, then my tongue swelled up, I couldn't remember...
  3. greenbeanie
    My understanding is that false negatives are fairly common in children, but the test still seems useful because a positive result would be informative. My daughter got a clear positive on tTG-IgA (hers was 69, with anything over 4 positive) the week after she turned four years old. And she was not really eating much wheat at all at the time, though I did...
  4. greenbeanie
    My daughter's endoscopy also looked normal during the procedure, but biopsies confirmed celiac. Her tTG-IgA was 65 the week before (and DGP tests were positive too). Our pediatric GI does not give Marsh scale ratings for young children, but he said that her intestinal damage was clear in the biopsies but not as widespread as he'd expect given her blood test...
  5. greenbeanie
    My four-year-old daughter had a clearly positive biopsy, but everything looked normal during the endoscopy itself. The pediatric GI said that he wouldn't expect the damage to be visible in most young children with celiac. Like your son, she also had lots of vomiting, which started when she was just a few weeks old and exclusively breast feeding. At one...
  6. greenbeanie
    Bring her favorite stuffed animal or doll. If the nurses are willing, they can pretend to take its blood pressure, listen to its heart, and have it try the gas mask on before doing those things to your daughter. We had great nurses who even put a band-aid on my daughter's stuffed animal after pretending to take out its IV. My daughter thought it was hilarious...
  7. greenbeanie
    I haven't had an endoscopy yet myself (it's happening in a couple days), but after my daughter's endoscopy they told me it was normal for her to wake up coughing. She had general anesthesia, though, so I'm not sure if that's typical with other types of sedation too. She did not in fact cough much or complain about a sore throat, but from the way the nurse...
  8. greenbeanie
    Thanks, that's good to know.
  9. greenbeanie
    I just accidentally hit the "votes" feature when trying to read a post using a touch-screen device. The screen re-sized just as I was trying to touch the topic link. It looks like I gave someone a one-star vote, which I didn't mean to do at all. I'm not even sure what the voting is supposed to be for. Is there a way to undo votes? Or does the votes feature...
  10. greenbeanie
    Momma bee, I also read your original post before it was edited. In addition to tarnelberry's suggestion about writing down a plan with the daycare director, it might also help to give them an official letter from your daughter's doctor clearly stating that she must never eat any gluten or it will cause intestinal damage. Even if you've told them the exact...
  11. greenbeanie
    I had a long-awaited appointment with a GI today, and she was superb. She actually seemed to think she'd have to convince me that I needed an endoscopy urgently, whereas I was expecting that I'd need to convince her not to dismiss my concerns about celiac because of the negative blood tests. She clearly didn't expect me to be as thrilled as I was to have...
  12. greenbeanie
    I would strongly recommend getting the celiac tests before going gluten-free. My four-year-old daughter was just diagnosed, and she's had many of the symptoms you mentioned. At various points she seemed to have multiple food allergies that we could never figure out (multiple negative rounds of food allergy tests but immediate improvement once I stopped breast...
  13. greenbeanie
    An endoscopy can be used to check for other things too. If it is celiac, my understanding is that in some cases they can see the damage right during the endoscopy itself, though in most cases they can't see it until looking at the biopsy samples under a microscope. My daughter's GI told us in advance that he wouldn't expect to see any damage that day, especially...
  14. greenbeanie
    It's good to hear that it got better after going gluten-free. I can't wait until all this testing is done so that I can stop eating gluten and start feeling better! Does anyone who had neuro symptoms remember which tests on the celiac panel they were positive for?
  15. greenbeanie
    Hooray! Good job for being persistent!
  16. greenbeanie
    I'm sure you've probably already thought of this, but did you check you BP meds (and any other meds and vitamins you take) to make sure they're gluten-free?
  17. greenbeanie
    It might be worth faxing a copy of the blood work directly to the GI's office yourself (even if her doctor already sent it electronically). I was able to get my daughter into a backed-up office much sooner that way. When I called they told me repeatedly that the first available appointment was in ten weeks, and that there was no way we could get in sooner...
  18. greenbeanie
    For anyone diagnosed with celiac who had significant neurological problems, which of the blood tests came up positive for you? Are some tests better at testing the neurological manifestations of celiac than others? I've read conflicting information on this. Some sources say that the older anti-gliadin tests are actually better at detecting celiacs with neurological...
  19. greenbeanie
    With due respect greeneanie, your post is purely speculative and unsupported by documentation. Although you suspect that this is the answer your daughter's issue (and it may be so ), most members would want more than an antidotal solution. Perhaps that was an other component in that fluoride pill that made her have tantrums. Have you pursued that...
  20. greenbeanie
    If she takes fluoride pills, make sure you check them for gluten too. Long before my daughter was diagnosed with celiac, I noticed that she always had tantrums right after taking fluoride. I stopped giving it to her and told the dentist about the tantrums, and he looked at me like I was crazy. But whenever I re-tried the fluoride, she had another tantrum...
  21. greenbeanie
    Hang in there! It sounds like you're on the right track, and you'll get through this. Only a few more days until the 19th. In response to your original comment about an unsupportive pediatrician, I'd really urge you to switch doctors as soon as all the testing is over. My daughter and I both had the same family physician as our PCP for years, and she gave...
  22. greenbeanie
    My daughter, who just turned four, had her endoscopy a few days ago. The children's hospital unit where they did it was really excellent. Someone stayed with us in the prep area beforehand and blew bubbles and painted with my daughter, then put a blood pressure cuff and gas mask on the stuffed animal she brought before they did hers, etc. They let me stay...
  23. greenbeanie
    I'm happy to report that the leg pains are gone, the withdrawal seems to be over, and I have a calm and cooperative child! After just three days! I sure hope I'm not celebrating too soon, but this is truly amazing. My girl has never been this calm in her life. Phew! So glad that ordeal is over. Biopsy results and vitamin tests aren't back yet, but with...
  24. greenbeanie
    My four-year-old daughter had her endoscopy yesterday, and we went gluten-free immediately afterward. Since she was not allowed to eat before the procedure, the last time she had gluten was about 36 hours ago. This morning she woke up with leg/knee pain so bad that she couldn't stand up. It's only on one side. Massaging it and one dose of ibuprofen helped...
  25. greenbeanie
    I would also hesitate to change her diet until you've heard directly from the GI doctor or nurse that you should do so. We've just been through this with my four-year-old daughter. All three tests they ran were clear positives, and her PCP said to stop gluten right away. He was well-intentioned, but that was bad advice. Fortunately, I 'd done my homework...
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