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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    You've already gotten some great suggestions - it will get easier to navigate all of this with time! One thing I have to add is to make sure you wash the outside of her lunch box before refilling it every day. Even if all her stuff is kept on a separate napkin or placemat while eating, it seems like the chances are pretty high that the (closed) lunch box...
  2. greenbeanie
    My daughter was 4 at diagnosis and had gluten withdrawal for a couple of weeks, even though her digestive and sensory symptoms had pretty much immediate improvement. She was very grumpy but was too young to really explain how she felt mentally, so I'm not sure if it was a brain fog type of feeling or something else. It was helpful that she always had clear...
  3. greenbeanie
    Thanks for the encouragement. This lab's reference range shows anything over 4 as positive, but I know other labs use different ranges. I'm not sure if that reflects an actual difference in the labs' measurement methods or is just a matter of their reporting criteria. Our pediatric GI clearly thinks that for the small percentage of celiacs who are sensitive...
  4. greenbeanie
    How long does it normally take for a young child's tTG to go down to normal? My daughter is 4 1/2. Her tTG was 65 at diagnosis and was still positive at 9 after six months (with anything over 4 considered positive). Obviously we're happy it decreased significantly, but the doctor expected it to be negative by now, and of course that's what we were hoping...
  5. greenbeanie
    I would definitely get rid of the sippy cups, even if they are the kind with smooth silicone tops that can go through a dishwasher. My daughter is 4 1/2, and we had a totally gluten-free kitchen for the first six months. This was by far the easiest approach for us. Recently my spouse decided to keep a loaf of wheat bread at home, and that has made everything...
  6. greenbeanie
    Thank you for sharing your story. I am only 38, but I also went through over 30 years of increasingly-severe symptoms that everyone kept brushing aside until I finally figured out the problem myself. I still seethe when I think of all the dismissive and downright ignorant things doctors have said to me over the years. Like you, I finally got so tired of being...
  7. greenbeanie
    I was just doing a PubMed search for something different and happened to come across the recent articles below. Their conclusions are fairly tentative, but the initial results are quite interesting. The full text of the 2013 article is available for free if anyone's inclined to read the details. One of them does specifically look at a DQ2/DQ8 connection....
  8. greenbeanie
    I am also interested in this topic. My understanding is that cross-reactivity of food proteins in IgE-mediated food allergies is well-established, but I don't know what that means for celiac, since it's not an allergy. I have a latex allergy and also react to some (but not all) of the cross-reactive fruits; this is known as "latex-fruit syndrome". My daughter...
  9. greenbeanie
    You might try some rice crackers. I forget the brand we usually get, but they're round and come in little a plastic tray with several rows. I think they're called "brown rice snaps" or something. If I remember the brand name, I'll come back later and post it. The tamari seaweed kind are excellent (though definitely not the right choice for an upset stomach...
  10. greenbeanie
    Have you tried reducing sulfites in your diet? I have also reacted to most of the foods you mentioned, with worsening symptoms for decades. My daughter has celiac and I had so many autoimmune symptoms that both my GI doctor and I were shocked that my celiac tests came back negative. I've been gluten free for six months now and I feel better than I ever have...
  11. greenbeanie
    Welcome to the forum! I'm sorry you're feeling so awful! I don't know much about thyroid issues, but I have heard that sulphur burps sometimes indicates giardia infection. I was recently tested for that myself and was negative, but my doctor said it's the kind of thing that can become chronic and flare up from time to time if untreated. People can get it...
  12. greenbeanie
    Merry Christmas! And thanks for all the suggestions, everyone!
  13. greenbeanie
    Ha! Thanks, everyone. Irish Heart, I will try that crust recipe next time - with vodka!
  14. greenbeanie
    This is our first gluten-free holiday season. We had Thanksgiving at our house, where we have an entirely gluten free kitchen, and everything but the pie crust was a success. I've tried various recipes, and they taste fine and even roll out fine, but when I try to transfer the crust to the pie plate it just falls to pieces every time. Last time I resorted...
  15. greenbeanie
    We've been fine with Planters roasted/salted cashews.
  16. greenbeanie
    We never buy from bulk bins anymore and had a hard time finding nuts in our local stores that aren't produced in shared facilities with wheat. I finally found Wonderful brand raw almonds that seem to be okay, though they're usually out of stock at our local Stop & Shop. I buy a bunch of bags whenever I'm lucky enough to find them! We've also eaten their...
  17. greenbeanie
    Though it's difficult to keep feeding a child something that may make them sick, I also think it would be much better to do the endoscopy before making her gluten free. If she has celiac, an official diagnosis could also be important later so that any future doctors she sees will take it seriously. We spent the better part of three years trying to get a doctor...
  18. greenbeanie
    My daughter started sleeping much less, but for her it was a good thing. She was sleeping more soundly and abruptly stopped napping, whereas she'd been taking 3-hour naps for months before. I think she'd been feeling so yucky and exhausted after eating lunch that she basically just collapsed in bed and tried to sleep off the gluten. She'd still wake up grumpy...
  19. greenbeanie
    My daughter was diagnosed with celiac just after she turned four, after many neurological and digestive symptoms plus awful diaper rashes and vomiting that began is very early infancy. We knew from early on that it was a food-related problem because she improved immediately when I suddenly stopped breastfeeding and an allergist put her on Neocate formula...
  20. greenbeanie
    My daughter had leg pain starting before she could even talk. It was so bad once when she was about 1 1/2 that we took her to the urgent care center, wondering if she could have broken her leg (despite no apparent fall or injury). It hurt so much that she screamed and her legs buckled when we tried to get her to stand up, but she couldn't talk so it was...
  21. greenbeanie
    I'm so sorry you're going through this, and I hope things improve soon! On an optimistic note, I had a similar experience a few years ago (but without such elevated liver enzymes) and have improved hugely since going gluten free. I'd originally had almost constant rashes since I was six years old, a very irregular menstrual cycle ever since I was a teenager...
  22. greenbeanie
    My daughter's sleep improved within days (fell asleep easier, and less twitching and thrashing around in her sleep). She'd had huge, loose stools rather than constipation, but that started to improve within days. I think it was about 3-4 weeks before they stopped floating. Her sensory issues, which had been pretty acute, also improved steadily starting in...
  23. greenbeanie
    I would also suggest going 100% gluten free regardless of your test results. I know that can be hard without a clear diagnosis, but for me it has made all the difference in the world to be totally strict about the diet all the time. I had been gluten-light for years and had many of the problems you mention, but my celiac tests were negative after a miserable...
  24. greenbeanie
    Poor little guy! It sounds like he must be pretty uncomfortable. If it's tolerable to stick it out until the scope date, though, I would keep it up if it were my child. As yucky as the challenge is now, it might be much worse if he had to do it again in the future (if an official diagnosis later became necessary for school or something). But if an official...
  25. greenbeanie
    Welcome, Angela. I had some of the same symptoms (more info in my signature below) and was hospitalized for ataxia, numbness, and tingling a few years ago. They suspected MS, but I also had normal MRIs, so they finally sent me home without a diagnosis. I had some unusual mineral test results in the hospital too, but nothing that alarmed them or led to any...
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