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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    My hair fell out in the shower every day during my gluten challenge a couple years ago - enough to cover my hands when I shampooed and to clog up the drain, even though my hair is short. It was quite alarming. I am a woman in my 30's and was suddenly afraid of going bald! And I always had a rashy and blistering scalp too. If I remeber correctly, I think it...
  2. greenbeanie
    I hope so too. For YEARS multiple doctors insisted that nothing was wrong with my daughter because she was growing so well (consistently around the 90th percentile for height and weight - tall and thin, as I was at her age). And when I finally figured out myself that she must have celiac and asked specifically for the tests, our doctor refused to even order...
  3. greenbeanie
    Thanks!
  4. greenbeanie
    Is it necessary to avoid sharing a toothpaste tube with a gluten-eater? My daughter and I have kept a separate toothpaste tube since her diagnosis. My partner eats gluten outside of the house and uses a different tube. This is easy enough to do, but sometimes if we run out or go on vacation or something, it would be easier for us all to share one tube. ...
  5. greenbeanie
    Has your magnesium level been tested? I do not have a clear disgnosis myself, but after decades of symptoms and a daughter who has been officially diagnosed with celiac, I've had immense and life-changing improvements on a gluten free diet. Anyhow, one of my earliest problems was awful hand cramps as a kid. I'm right-handed and it was always worse in my left...
  6. greenbeanie
    For what it's worth, I'd point out that severity of symptoms during the gluten challenge doesn't necessarily correlate with test results at all. I'd been gluten-light for about 15 years before testing, probably having bread or pasta twice a week on average, plus tiny amounts of gluten in seasonings and whatnot most days. I wasn't specifically avoiding it...
  7. greenbeanie
    Did your daughter start taking any new vitamins or probiotics around the time or her diagnosis? This was probably just a weird fluke in our case, but the nutritionist at my daughter's GI office recommended a chewable calcium supplement because she couldn't handle much dairy when she was diagnosed, and we were worried about her calcium intake. The supplement...
  8. greenbeanie
    To the original poster: Sorry you are going through this. It is so frustrating when a child's doctors keep saying nothing is wrong and you know something is. My daughter had symptoms since very early infancy - GI symptoms, but also lots of behavioral and neurological symptoms, as well as immediate coughing and vomiting after eating, which we thought might...
  9. greenbeanie
    My daughter had stomach aches all the time before diagnosis. She spit up dozens of times a day as a baby too, and eventually had to stop breastfeeding and was put on a super-hypoallergenic formula with no milk derivatives at all (which was also gluten free). That solved the problem until she started solids, then everything went downhill again until she was...
  10. greenbeanie
    I would love to see more gluten-free products (especially breads, flour mixes, and pizza crusts) without xanthan gum. I bake at home with guar gum all the time and it comes out perfectly fine, but so many commercial gluten-free flour mixes and baked goods use xanthan gum instead. My daughter is fine with it, fortunately, but it makes my mouth burn and my...
  11. greenbeanie
    Did these new trouble start before or after you began the multivitamin and probiotic? If they started after, could that be the trouble? I know that probiotics really do help a lot of people, but in my own case they actually contributed to significant problems after I'd be gluten free for a while. I am very sensitive to sulftes, even the naturally-occuring...
  12. greenbeanie
    My daughter (age 4 at the time) was positive on all three blood tests they ran (tTG-IgA and both DGP tests), and she had a positive biopsy but the damage wasn't visible during the endoscopy itself. And it was only the biopsies of her duodenal bulb that showed damaged villi. Her doctor was very surprised that the biopsies didn't show more damage throughout...
  13. greenbeanie
    Welcome to the forum, kcrawford! I just want to echo what others here are saying - though it's really hard to keep feeding a kid a food that seems to make him sick, he needs to keep eating gluten if there is any chance of doing an endoscopy. It may be much, much harder to put him back on it for testing in the future, so it's definitely better to get everything...
  14. greenbeanie
    I've had low cholesterol in the past too, and it has come up into the normal range since I've been gluten free. I don't have a clear diagnosis either, but had decades of symptoms that improved hugely once I completely eliminated all gluten very strictly. Being gluten- light for years didn't really help that much - it was the last little bit that made all...
  15. greenbeanie
    Thanks, Nicole. I will try to get the EMA run next time too, as that might help clarify what's going on. She did not have the EMA run at diagnosis - her doctor said it's rarely positive in young children, and her biopsy and other blood tests were all strong positives, so there wasn't any doubt about her diagnosis. So we wouldn't have a previous result to...
  16. greenbeanie
    The fussiness could certainly just be her age, and it is a million times better than it was before, but what I am concerned about is the fact that her tTG is still positive and stopped falling, despite evidence (the lowest possible negative DGP tests) that she's not getting exposed to gluten. Do some kids just have positive tTGs forever, despite evidence...
  17. greenbeanie
    My daughter was diagnosed 17 months ago (at age four) with a positive biopsy and positive blood tests on the whole panel they ran. Her tTG-IgA was over 16x normal, her DGP-IgA was about 2x normal, and her DGP-IgG was over 3x normal. She had an immediate response to the diet, and her tTG fell all the way down to just under 2x normal within the first nine months...
  18. greenbeanie
    Welcome to the forum! Sorry your little guy is going through this. My daughter had joint pains that came and went since she was a young toddler, and she was diagnosed with celiac just after she turned four. She had symptoms since early infancy, but the neurological symptoms were always much more prominent than the GI symptoms (though she had those and rashes...
  19. greenbeanie
    Thanks for this info. I used to eat Goya canned beans and cream of coconut all the time, and I stopped because of uncertainty about whether they were safe, but I'd love to go back to eating them if they are gluten free. Please do keep us posted if you find out more! I seem to recall finding a gluten-free list on their website at one point last year, but I...
  20. greenbeanie
    French fries are usually very high in sulfites, and sulfites are also often added to mashed potatoes at restaurants and other potato products (to prevent browning). Fruit salad at restaurants often has lemon juice from concentrate on it for the same reason, and the lemon juice concentrate is very high in sulfites. I haven't had fries since going gluten free...
  21. greenbeanie
    I'm joining this discussion quite late...but original poster, have you considered whether you might be reacting to sulfites? I had tons of increasingly-bad classic allergy symptoms after going gluten free, and it took me months to figure out that the problem was sulfites. I react strongly to naturally-occurring sulfites that are in fermented foods (vinegar...
  22. greenbeanie
    We love Schar shelf-stable crusts. I've only ever seen them in one store, but you can buy them online. They are individually wrapped and come two per box, pre-cooked. You add sauce, cheese, and other toppings and bake just long enough to cook the toppings. If you bake them on one of those metal pizza trays with little holes in it, the bottom stays firm and...
  23. greenbeanie
    It's strange if they just did the other bloodwork for follow-up, and not the celiac tests too... My daughter was diagnosed just after she turned four, and her tTG was 65 at diagnosis, with a reference range of 0-3 as negative and 4+ as positive. So it was over 16x normal at diagnosis. Six months after diagnosis, it was down to 9. Nine months after diagnosis...
  24. greenbeanie
    My whole family loves Schar frozen hearty grain bread. Recently our local Stop & Shop stopped carrying it, and I'm so sad! I haven't been able to find it anywhere else. Schar's shelf-stable pizza crusts are good too (they're pre-cooked and individually wrapped - you add toppings and bake briefly). I'm not crazy about their other shelf-stable breads, but...
  25. greenbeanie
    I was diagnosed with polycystic ovary syndrome years ago, so I know I have a hormonal imbalance. But I feel like my hormones pretty much evened themselves out on their own within six months of going gluten free, though they haven't been checked lately. I did see the nutritionist that my PCP referred me to the other day, and she was very surprised that my...
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