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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    Thanks for the info - I'll ask the audiologist about that specifically. She's only had one significant cold in the past year, which was going around her preschool class. I'd say she's been sick less often than most of her classmates since she's been gluten free. As an infant and toddler she used to gag and vomit frequently, but it was always associated with...
  2. greenbeanie
    She's never had an ear infection, fluid draining from her ears, or any other ear problems as far as we know. Both the primary care doctor and her allergist said her ears looked completely normal during a physical examination. I'm sure the audiologist will recommend further testing if she thinks infection might be the issue, but my daughter doesn't have any...
  3. greenbeanie
    My daughter just had her 5-year-old physical, and she failed the hearing test. She had no response at all to even the loudest beeps in either ear. She was being cooperative and really trying and paying attention. The same thing happened at her physical last year, but we were right in the middle of getting her celiac diagnosis at that point, and it was the...
  4. greenbeanie
    Are you sure it's the salad itself you're reacting to, rather than salad dressing? Cider and salad dressings, especially vinegar-based ones, are high in sulfites. If you also react to dried fruit, bottled lemon juice from concentrate (which is often put on fruit at restaurants and is in a surprising number of other things), and soups and sauces in general...
  5. greenbeanie
    Just wanted to clarify - if it's my comment above that you're referring to, I didn't mean that they're doing scopes every 3 months. They're doing follow-up tTG-IgA tests every three months until she gets into the normal range. She only had one scope at diagnosis.
  6. greenbeanie
    My daughter was diagnosed at age 4 with a tTG-IgA of 65, and six months later it was down to 9. This was on a scale with 0-3 negative and 4+ positive. Her GI decided to do follow-ups every three months until it got into the normal range. Nine months after diagnosis, it was down to 5 (but this was a much smaller drop than the initial one). We're doing a blood...
  7. greenbeanie
    That's tough, and I'm sorry you're having to go through this. My daughter is much younger (diagnosed a year ago and just turned 5 recently), and she used to be super emotional. She was clingy, irritable, and would cry at the drop of a hat. She'd sometimes start crying when a friend just said hi or smiled at her. Everything started improving immediately upon...
  8. greenbeanie
    I'm not sure. I had a week of awful diarrhea in mid-May that prompted my own GI to schedule me for a colonoscopy this month, which I'm dreading...but I'd assumed it was a separate issue from gluten because I hadn't been taking any risks with my diet. I still have no definitive diagnosis, so when the diarrhea returned after almost a year gluten-free, they...
  9. greenbeanie
    Thanks for the info, IrishHeart. Unfortunately I didn't wash or vacuum the car at all until today, when I suddenly realized the straw might be a problem. We've been driving around with the dust and bits all over for 2-3 weeks. I don't remember exactly when the tummy aches started up again, but it's been about that long (she's doubled over crying, every morning...
  10. greenbeanie
    This was true straw (not hay) - just the long stalks, with the seed heads removed. The garden center confirmed that it came from a grain and thought it was most likely oats, but they said it could be rye. They get their supplies from various sources so we don't know which farm this came from. It was local, though, so very unlikely to be wheat (which is not...
  11. greenbeanie
    Is exposure to straw (the kind used to mulch gardens, cover new grass as it grows, etc.) a possible source of glutening? My daughter was doing great until recently, when she started complaining of tummy aches in the car again. She always had stomachaches in the car before diagnosis, and I'd always assumed it was motion sickness, but the tummy aches stopped...
  12. greenbeanie
    This sounds very similar to my story! I'd been gluten-light for years, and did a six-week gluten challenge before celiac testing. My tests were negative for celiac (but only a few biopsies taken so it's not really clear how much to trust the results) but I had all sorts of other inflammation in my stomach and esophagus, and the GI recommended a strict gluten...
  13. greenbeanie
    We use Food For Life brown rice tortilla wraps, which our local mainstream grocery store has by the gluten-free bread in the freezer section. They taste good but are kind of stiff. I would love to find a good corn tortilla wrap that's not made on shared equipment with wheat, but no luck so far. Our store carries six different brands of corn tortillas...
  14. greenbeanie
    I thought that too - I have almost nothing in my house with any preservatives added, and make about 90% of my food from scratch. Added sulfites weren't listed on the labels of anything I was eating regularly. However, I was eating vinegar almost every day (in salad dressing), and sometimes dried coconut or the occasional fruit/nut bar, and sometimes home...
  15. greenbeanie
    Have you tried eliminating sulfites? Your list of unproblematic foods is similar to mine, and I found myself reacting to more and more foods over time. It actually got worse for a while after I eliminated gluten, because many gluten-free flours contain lots of sulfites (in potato starch and other bleached starches). In retrospect I can trace the sulfite problem...
  16. greenbeanie
    I'd recommend calling the GI's office back and asking specifically about celiac blood tests. Did the doctor run a full panel of celiac blood tests already, including DGP-IgA and DGP-IgG (since those may be more accurate in young children)? If so, what were the exact results and reference ranges? Insist on getting a copy of the actual results. Also, definitely...
  17. greenbeanie
    My daughter also had eating issues since birth, and we finally figured out four years later that she has celiac. I exclusively breastfed for the first 5+ months, during which time she had projectile vomiting, screaming and thrashing every 45 minutes in sleep, general irritability and sound sensitivity, and other problems that the doctors first dismissed as...
  18. greenbeanie
    That's tricky. I had an awful time convincing doctors to test my daughter, and she had pretty classic symptoms. Despite projectile vomiting, swollen belly, neurological problems, and daily tummy aches that went on for years, we had multiple doctors tell us she couldn't possibly have anything really wrong because she was tall for her age! I had to take her...
  19. greenbeanie
    Have you been eating dried fruit, a lot of vinegar or fermented foods, or other foods high in sulfites? That can cause breathing problems for some people. My tongue swelled up for months after I did a gluten challenge last year, and as a teenager I had episodes when I was gasping for breath after dinner and doctors couldn't figure out why. Asthma tests were...
  20. greenbeanie
    Welcome to the forum! This sounds very much like my daughter, who wasn't small for her age but was extremely fussy since birth. She was finally diagnosed with celiac at age 4. While sticking to a strict gluten-free diet is inconvenient, it's a breeze compared to dealing with a child who's unhappy all the time! We had a very hard time finding a doctor who...
  21. greenbeanie
    I had inflammation of my stomach and esophagus that was visible during the endoscopy, and they took biopsies. The H. Pylori test (from stomach biopsies) was negative, and my intestinal biopsies were negative for celiac. However, they only took 4 samples, and none from the duodenal bulb. My daughter has biopsy-confirmed celiac that would have been missed if...
  22. greenbeanie
    If you're talking about the encircled gluten-free symbol like the one shown on the first link below, it's the Gluten Intolerance Group's certification logo: Open Original Shared Link Their FAQ page gives info about their testing standards (products must test below 10ppm): Open Original Shared Link
  23. greenbeanie
    Food for Life brown rice tortillas are pretty good when heated (hard/breaky otherwise). Our local supermarket has them in the freezer section. We keep them frozen until ready to eat, then thaw them individually at room temp for about 20 minutes, then put in the microwave for a very short while.
  24. greenbeanie
    Welcome! I would recommend getting your toddler tested soon, before her system adjusts to a lot less gluten in her diet. Make sure they run both DGP tests (DGP-IgA and DGP-IgG) as well as the tTG test, since those may be more accurate in very young children. False negatives are certainly possible, especially at that age, so a negative result now would not...
  25. greenbeanie
    My daughter was conceived in a non-traditional way (with medical intervention), so we do not have full info about the other half of her genes. She didn't have the gene test herself because her celiac diagnosis was so clear. I am still extremely skeptical about my own test results, but at this point it doesn't make much practical difference. I'd certainly...
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