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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    Hi there. I've been following this thread but didn't post earlier because I'm not sure how helpful this will be, but I have a somewhat similar situation (and a partial solution that's helped me): I'm also negative for DQ2 and DQ8, though I have the alpha allele of DQ2.5 (and beta alleles of DQ5 and DQ7). Ignore that detail if it doesn't make sense - the genes...
  2. greenbeanie
    My daughter had neurological symptoms almost since she was born, and was diagnosed with celiac at age 4. She did have GI symptoms and bad rashes too, but the neurological stuff was by far our most significant concern. As an infant who was exclusively breastfed (when I was eating some gluten). The neurological stuff progressed in this order, as far as I can...
  3. greenbeanie
    Fenway has a gluten-free stand. They have Fenway Franks and individually-wrapped buns, plus cookies and a few other things. Also, individual mustard and ketchup packets so you don't have to use the main pumps that everyone touches to their wheat buns. It's a separate push-cart-type stand, so it may not always be in the same place. But it's great that it's...
  4. greenbeanie
    Change doctors, change doctors! We were in a very similar situation with my daughter. She had problems consistent with celiac essentially since birth (born early and had a traumatic birth, and was on four IV antibiotics for her first week of life, which was necessary at the time but surely messed up her GI tract). Her main symptoms are listed in my signature...
  5. greenbeanie
    Finally got it! Phew. (No, I haven't been playing every day all this time....but I did play quite often, and it was driving me crazy that I kept coming so close and then getting stuck.) Now I need a new diversion...
  6. greenbeanie
    My daughter had her endoscopy just after turning 4, and it went totally smoothly. The nurses were wonderful and even gave her stuffed animal a gas mask and band-aid, and tucked him under a blanket too. I'd highly recommend bringing a favorite toy! I was nervous about the anesthesia too, but it was fine. They sedated her with gas before putting the IV in,...
  7. greenbeanie
    I'd also urge you to stick with it for longer. I do not have an official diagnosis, but my daughter does. We both had huge, immediate improvements after starting a gluten free diet, followed by rough patches now and then (for no obvious reason - I'm pretty sure it wasn't from unintentional glutening). You might find that other intolerances become clearer...
  8. greenbeanie
    Welcome to the forum! My situation is similar - daughter diagnosed with celiac last summer at age 4, and decades of symptoms myself but negative celiac tests (including negative biopsy, though they only took four samples and none from duodenal bulb, and didn't check for lymphocytes, so I'm not entirely confident about the results). More info is in my signature...
  9. greenbeanie
    After being very lactose intolerant for 25 years, my lactose intolerance has disappeared! Like completely disappeared - I can now eat an entire bowl of ice cream with no ill effects whatsoever! Previously, even a tiny bit of butter or milk would cause room-clearing gas and hours of gurgling. The problem went away quite suddenly after 8 months gluten free...
  10. greenbeanie
    It does sound like more celiac tests are worth pursuing, and giving the gluten-free diet a good long try after the biopsy also seems like a good plan. I only have a minute and can't write much now, but my daughter had all sorts of neurological problems since early infancy. The neurologist thought she had CP for a while - her reflexes were very delayed, she...
  11. greenbeanie
    That's a tough one. I don't know how much this will help, but my daughter was gluten light pretty much her whole life (because of my own eating habits) until she was tested just after she turned four, and she had all positive blood tests and a positive biopsy. I did make sure she had some gluten every day for a month before the blood tests, but it wasn't...
  12. greenbeanie
    My best so far was 512 in a single square, while also having 256 in another square on the same board at the same time. Things went downhill very quickly after that... I never would have though it possible, but this game is even more addictive than Tetris. I'm going to be seeing numbers when I try to sleep tonight! Good thing I'm on vacation.
  13. greenbeanie
    Fun! I love this sort of thing! But I'm confused about the goal. I just got a score above 2048, but my highest single tile was only 256. Am I right in thinking the main aim is the high tile itself, and the score is kind of irrelevant (though it presumably corresponds to things you do to get a high tile)?
  14. greenbeanie
    Thanks so much for your response, Jess. I just got my results, and my tryptase was indeed normal. At least I now have a baseline value. I can probably convince her to run the test again next time I have acute symptoms. I am fortunate to have an allergist recently out of medical school who has heard of MCAS. Although it didn't occur to her until I asked about...
  15. greenbeanie
    Hello super-helpful people, I'm wondering if anyone who's been through MCAS testing can offer some insight into the value of tryptase testing alone (plus symptoms). I'm currently waiting for the results of that test, but it's the only one my allergist thought it was necessary to run. She seemed to think that a normal result would rule out MCAS definitively...
  16. greenbeanie
    Welcome to the forum, Bazicoon! I don't have any photos, sorry. But you know that pears can make a baby's poop look sandy, right? I don't know about looking like little rocks - that does sound a bit strange - but my daughter still has sandy-looking poop when she eats lots of pears.
  17. greenbeanie
    My daughter used to vomit all the time, before diagnosis. She was eating a gluten light diet at the time, mostly because that's what I did (and we didn't know then that she has celiac, obviously), so I don't specifically remember how long it happened after she'd eaten gluten. But she started spitting up dozens of times a day as a breastfeeding infant, then...
  18. greenbeanie
    If anyone else is feeding a celiac child this particular flavor, stop immediately and call Stonyfield. If you have any at home, save it so that you have the batch and timestamp numbers from the lid/container.
  19. greenbeanie
    Okay, I'm freaking out a bit. Is Stonyfield Yo Toddler strawberry banana yogurt with cereal gluten free or not? Their office is now closed so I can't call. It has the "Certified gluten free" symbol (with the little G F in a circle, from the Gluten Intolerance Group) on the package, and I fed my daughter some. But now I see that oats and oat bran are ingredients...
  20. greenbeanie
    A sulfite allergy can also cause this. My tongue swelled up during my gluten challenge last year, and stayed swollen and burning for months afterward. It hurt to eat almost anything. I was tested for everything they could think of, including a CT scan of my neck and blood tests for Sjogren's and B12 deficiency, and but everything was normal. I finally figured...
  21. greenbeanie
    If she's off dairy, is she drinking a milk substitute? My daughter is very sensitive and definitely reacts to Rice Dream. I know it's tested to below 5ppm, but barley enzymes are used in processing, and my daughter has a clear reaction to it. It was way more painful for her to give up Rice Dream than to give up gluten, as she'd always had a problem with dairy...
  22. greenbeanie
    Have you tried probiotics? My daughter has celiac and had positive blood tests and biopsy, but my celiac tests were negative, and probiotics have helped both of us tremendously. She's almost five and has been taking probiotics daily since her diagnosis last June. She had a very distended tummy before, and it still does stick out quite a bit after she eats...
  23. greenbeanie
    Hi, Dania, and welcome! I'm not sure I have any useful advice, since I'm still trying to get my own situation sorted out. But the one thing I do know for sure is that I have a latex allergy and also react to pretty much all the cross-reactive fruits. I have never had an anaphylactic episode, fortunately, though I have had scares that led me to keep my Epi...
  24. greenbeanie
    You can get some good fresh Brussels sprouts (not frozen - they get mushy), cut in half lengthwise, coat lightly in olive oil, and add chopped garlic or a little balsamic vinegar and a bit of salt. Bake for a while (30-45 mins?), stirring once. Or you can bake for a short while and then broil briefly to brown them but keep them crunchy. They are delicious...
  25. greenbeanie
    I had horrible chronic insomnia for 20 years that HUGELY improved within two weeks of going gluten free. I'd been to many doctors about it, had a sleep study, tried prescription medications as well as herbal supplements, and basically tried everything else that anyone suggested to me. Nothing helped. It was so miserable and I could barely function. The sleep...
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