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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    (I'm not sure why my message posted twice. Just deleted this repeat posting. Browser seemed to get stuck when it was trying to post before.)
  2. greenbeanie
    My daughter had pretty much all of the symptoms you mention, except loose stools instead of constipation. She was diagnosed with SPD at age 3, but she had all sorts of neurological, sleep, and food-related problems essentially since birth. Her sleep problems were really horrible as an infant, and that (along with projectile vomiting) was the only thing that...
  3. greenbeanie
    Welcome to the forum! I do not have an official diagnosis, but my daughter has celiac and I had symptoms for years that resolved or improved dramatically after going gluten free. I did a six-week gluten challenge about six months ago, because I'd been gluten-light for years and wanted accurate tests. To make a long story short, all of my previous symptoms...
  4. greenbeanie
    I had a similar story, wystearya. After many tries with different rotation diets and conflicting allergy test results, I eventually realized on my own that most of my problems were much worse after eating gluten. I'd tried wheat-free diets before but was still cooking with barley, so I never had a totally gluten-free diet before last spring. Decades of diarrhea...
  5. greenbeanie
    It was Diana (1desperateladysaved) who first suggested the magnesium possibility to me, in reference to the shaky feeling. What a change for the better! I doubt I ever would have connected it to a vitamin deficiency on my own, especially since I'd seen multiple specialists for the leg tingling - which was annoying but not my main concern - and none of the...
  6. greenbeanie
    Another person on this forum recommended magnesium supplements when I was experiencing similar symptoms, and that made a HUGE difference for me. Within days the feeling of internal shaking was gone, and tingling in my leg improved noticeably within weeks. After several months of taking about 500mg of magnesium daily (with dosage approved by my doctor), I...
  7. greenbeanie
    Welcome! My brain fog took a good three months to improve. My long-standing diarrhea, night sweats, and insomnia improved within days of going gluten-free, but impaired memory and coordination difficulties actually seemed to get slightly worse before they got better. Then I suddenly realized one day that I hadn't walked into any door frames or forgotten...
  8. greenbeanie
    Welcome to the board! I'd definitely go to another doctor and insist on another round of blood tests. It's so frustrating it is when doctors just keep saying that nothing's wrong and you know there is! Whether it's celiac or something else, it sounds like your little one needs a doctor who will take these issues seriously. Any doctor can order the blood...
  9. greenbeanie
    My daughter is four and was just diagnosed in June, and for the first couple months I gave her probiotics every day. We used Go Live flavorless powder packets from Whole Foods, mixed with juice. It seemed to make a really big difference at first, and on the occasional day when we'd run out or I'd forget she'd have almost-diarrhea, like she did before diagnosis...
  10. greenbeanie
    I am so sorry you've had to go through that. Your frustration at doctors must be immense, and understandably so! I am also in perpetual limbo with no official diagnosis, and I have been struggling for months to come to terms with that. After decades with dozens of unexplained, worsening problems (I'll spare you the details), I've had more doctors than...
  11. greenbeanie
    Will he drink really smooth things through a straw? My daughter also had a lot of feeding difficulties as an infant and toddler (before her celiac diagnosis). Part of it was mechanical - she had some fine motor skill delays and sensory issues, and she gagged on lots of things and completely refused certain textures until she was over two. However, what finally...
  12. greenbeanie
    Thanks for your responses. My daughter is fine with quinoa and has been eating it since she was a toddler (long before her diagnosis), so that's encouraging. She sometimes gets a tummy ache from buckwheat. It turns out that another parent had a concern about the oatmeal snack too, so it sounds like they may just replace that menu item anyhow. That would...
  13. greenbeanie
    My four-year-old daughter was diagnosed with celiac three months ago, and she is doing great. So far we've avoided gluten-free oats too. However, her preschool just revised their snack menu to make everything gluten free for the whole class, which is wonderful of them, and they've added gluten-free oats to their proposed menu once a week. Their plan is to...
  14. greenbeanie
    I would really push to see a rheumatologist, if you haven't already. I had a positive ANA that was discovered when I was hospitalized for unexplained ataxia a few years ago. It was a relatively low titre (1:100, speckled) and my RF was only 1:10, so my doctors dismissed it as meaningless and never followed up. The worst of the ataxia lessened when I stopped...
  15. greenbeanie
    My four-year-old with celiac also uses grape-flavored chewable Claritin. She takes it every day during pollen season. She also occasionally takes Target brand chewable Children's Allergy Melts (diphenhydramine HCl, 12.5 mg, grape flavor - i.e., generic Benadryl). The Target one does not say it's gluten-free on the package, but someone on this forum recommended...
  16. greenbeanie
    My daughter (who has celiac) had a really rough five days or so after going gluten-free. It was a little hard to tell what was caused by what, though, because she's sensitive to medications and had also just had anesthesia for her biopsy, so she was also getting that out of her system at the same time. She had very rapid improvement pretty suddenly after...
  17. greenbeanie
    I feel for you! I got a very swollen and painful tongue during my gluten challenge in May/June, with a burned feeling most of the time. I've been strictly gluten-free since late June, and it's just now starting to improve very, very slowly. The pain and swelling worsen after I eat anything fermented or containing baker's yeast or fruit or anything acidic...
  18. greenbeanie
    Thanks for the update! When we were in the testing phase, it was always so helpful to find threads where people came back and posted the outcome later. I hope your son heals up quick and starts feeling better soon!
  19. greenbeanie
    Sounds like your whole family is going through a lot - I hope you get clear results from testing! There doesn't seem to be much consensus about how long of a gluten challenge is necessary after not eating it regularly, but this does sound like a case where her previous cheating by eating gluten once or twice a week may turn out to be helpful. My daughter...
  20. greenbeanie
    I'm concerned about my recent kidney function test results, and I'm wondering if anyone has experienced something similar. Here's the situation: My celiac tests were negative (more info about health history in my signature below), but I had many, many symptoms and have celiac in a first-degree relative, and my biopsy only took four samples (none from duodenal...
  21. greenbeanie
    As far as I can tell, there isn't much consensus on this. Very young children seem to be especially susceptible to false negatives even when eating gluten regularly. I'm not a doctor, but I'd think it would take months rather than weeks on gluten for a toddler to have a reasonable chance of getting accurate results, unfortunately. I've heard that the DGP...
  22. greenbeanie
    Congratulations, that's wonderful!
  23. greenbeanie
    My daughter had a lot of the same issues (since early infancy) as your son, and she was recently diagnosed with celiac at age 4. I agree that getting the tests done now makes sense. It would have saved us a lot of grief if we'd known sooner, so it's great that you're investigating now! If he does have celiac, you might need documentation to get accommodations...
  24. greenbeanie
    This sounds very much like my daughter before her celiac diagnosis. She had obvious digestive problems since she was two days old and my breastmilk came in, and the problems only got worse and worse. For the first three months our doctor kept insisting it was just colic, even though she had projectile vomiting and was clearly in pain. Her sleep was awful...
  25. greenbeanie
    My daughter had just turned 4 when she had her biopsy, and the children's hospital unit where they did the procedure was absolutely wonderful. From the moment we arrived the nurses made sure she had fun. They gave her toys to play with while waiting, pretended to take her stuffed animal's blood pressure before they did hers, and showed her photos of what...
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