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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    Hello, Clairet3. Looks like you have lots of useful advice already, but I just wanted to add that my daughter was diagnosed at age 4 with a tTG about 16x the upper limit of normal (and high positives on all other tests too), and she also had sensory processing disorder prior to her celiac diagnosis. The therapy for sensory processing disorder did not help...
  2. greenbeanie
    Does anyone have an infant/toddler with biopsy-confirmed celiac who had very low iron saturation as an early symptom? I posted in the “Testing” forum a few weeks about about my 15-month-old who has been on a very low-gluten diet due to first-degree relatives with celiac. He started showing obvious symptoms after a short time of eating a small amount of ...
  3. greenbeanie
    I’m so sorry you are going through this, and especially that your doctors keep dismissing it as anxiety. I had doctors telling me for almost three decades that that having diarrhea 8-12 times a day was just anxiety (without doing a single test other than a stool sample for parasites, and without ever referring me to a GI). The longer it went on, the more t...
  4. greenbeanie
    I’m so sorry your son is going through this. It’s good that you have a GI appointment for next week, but that’s still a difficult wait given his current pain. Have you been able to speak to a nurse (not just the scheduler) at the GI’s office about what to do in the meantime? Now that you have the appointment scheduled, he might be considered a patient there a...
  5. greenbeanie
    Unfortunately we live in a rural area (of the U.S.) with a severe shortage of primary care doctors, especially pediatricians. Most are not taking new patients or have a months-long wait. I may wait out the waiting lists and switch in the future, but for now we’re unable to see another doctor in the short term.
  6. greenbeanie
    Hello! I used to post a lot but haven't for the past several years. I have a daughter with biopsy-confirmed celiac who tested high positives on every test on the panel at age 4, and who had symptoms since infancy. She's now 12. I have been diagnosed with celiac myself by a GI but my situation was less clear-cut (long story). My daughter and I have an entirely...
  7. greenbeanie
    Hi Claire, I haven't been on these boards much lately, but I just happened to see your message and wanted to follow up on my original post above (from 2013). My daughter was indeed diagnosed with celiac a couple weeks after that post, right around her fourth birthday. She had high positives for every test on the panel, and the diagnosis was confirmed...
  8. greenbeanie
    Welcome, Jane! Those photos look different from the rash I get from gluten - but mine hasn’t been confirmed as DH by a skin biopsy, and I don’t want to hazard a guess about someone else’s rash based on photos, and risk misleading you. Hopefully your doctor’s appointment will be helpful! However, on a totally different note, have you ever been tested ...
  9. greenbeanie
    It's encouraging that you stopped being so sensitive to gluten-free packaged foods with time, Victoria1234! I live in an entirely gluten-free household, fortunately, so we have no worries about cc here. My daughter and I both had trouble with gluten free foods made in shared facilities, even those testing below 20ppm, so we eliminated almost all packaged...
  10. greenbeanie
    Thanks for your reply, squimingitch - and I'm so glad you're safe from Irma! You got me thinking about iodine again, and that may be the culprit. I had been so happy with the huge improvement after going gluten free that a little itch now and then was tolerable. But I haven't really been avoiding iodine aside from buying non-iodized salt, and maybe I...
  11. greenbeanie
    Hi folks! For those with confirmed DH, do antihistimines make it worse? I'm trying to figure out an unpleasant puzzle. I've been strictly gluten free for over four years. It took a couple years of eliminating all processed foods for symptoms to resolve, but finally I've been feeling amazingly good for the past year. I have an official celiac diagnosis...
  12. greenbeanie
    Hi folks! I haven't posted in a while because my daughter and I are both doing great since we removed a few certified gluten free products from our diet last spring that had trace gluten below 20ppm. In a roundabout way the rise and fall of my daughter's blood tests along with my reaction to trace gluten cc (before we knew there was any) and quick disappearance...
  13. greenbeanie
    Sorry you're going through this, and I hope you get to the bottom of it soon! Some kids may just be more sensitive to trace amounts than others. A similar thing happened with my daughter (who's now 6), and we ended up finally getting her tTG down by eliminating several certified gluten-free flours that I was using to bake from scratch. I'll avoid repeating...
  14. greenbeanie
    Have you tried Tinkyada brown rice pasta? I've made lasagne with their noodles for gluten-eaters many times, and no one even knew it was gluten free. Their spirals are also great. The consistency is a little different from wheat pasta, but not too much. Aside from being really yummy, this is the best brand I've found in terms of acceptability to people used...
  15. greenbeanie
    My daughter's school is nut-free but otherwise allows kids to eat anything in the classroom. It is a private school in the U.S. with no cafeteria, so everyone eats lunch and snacks at their tables. The teachers assign places and marked each child's place out with masking tape early in the year, and taught them to keep their hands in their own space and not...
  16. greenbeanie
    I have not found a brand of sorghum or millet flour that I trust and can get locally. But the stores in my area only carry a limited selection of Bob's Red Mill flours, and I would probably try those if they are from a dedicated gluten-free facility. We use BRM rice flours (brown and white) with no problem. I have not investigated teff yet, or cared enough...
  17. greenbeanie
    Hi shanasun, We finally got my daughter's tTG into the normal range - for the first time ever - last month. For her, it did end up being the trace gluten of less than 20ppm in some combination of three different certified gluten free flours and spices. All were certified by the GFCO. They were the only ground/powdery products that we used from facilities...
  18. greenbeanie
    I get classic allergy symptoms from sulfites - runny nose, coughing, swollen tongue, etc. It's pretty much immediate, like within the first few bites. As a teenager I went through a period of gasping for breath after eating dried fruit, though we had no clue what was causing it at the time. I react to foods with naturally-occurring sulfites too (yogurt,...
  19. greenbeanie
    On the allergy line of camp and school forms, we also put "wheat, rye, barley, oats (celiac disease - must avoid even tiny amounts, but antihistimines won't help)," or something like that. Several camp directors and pharmacists have advised that we list it as an allergy, because staff are generally well-trained to take food allergies seriously, and any substitute...
  20. greenbeanie
    It's the Gluten Intolerance Group's Gluten Free Certification Organization (in the U.S.). They're the ones with the little G F symbol in a circle. Their certification standards are stricter than the FDA's requirement, since they only certify products with less than 10ppm of gluten (and they do test things regularly). Open Original Shared Link
  21. greenbeanie
    I think I probably shouldn't say the specific brands, since they're products that are probably fine for most celiacs. But it was two flours and one ground spice, all of which were certified gluten-free but made in shared facilities. They were all things I used on a fairly regular basis, but in quite small amounts. No more shared facilities for any ground...
  22. greenbeanie
    Hooray! It took two years to get it into the normal range, from over 16x the upper limit of normal at diagnosis. Both DGPs are normal now too. We were stuck at low-positive tTG for a long time. What finally did it was eliminating several GFCO-certified products that had detectable gluten at levels well under 20ppm. Once we did that, we got her tTG into...
  23. greenbeanie
    I believe that Enjoy Life apple bars are free of all those things.
  24. greenbeanie
    What do you all think about letting a kid actually pick strawberries in a field with wheat or rye straw - safe, or too risky? This is something I always loved as a kid, but I've been reluctant to bring my daughter, who is now 6. There is straw between all the rows, which is probably rye straw because that's a more common cover crop in our area. Picking the...
  25. greenbeanie
    I don't have much to add about your main question beyond what others have already said - if you were actually tested for celiac with the proper tests and it was firmly ruled out, that's very different than being told you don't have celiac by a doctor who never did proper testing. Many doctors are shockingly ignorant about what tests even to order, and there...
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