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greenbeanie

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

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
    I don't have a solution to the lip problem (sorry), but I do have a suggestion for the dermatologist appointment issue: Take photos! If you can show the doctor a photo of how it looked at its worst, that may help them take it seriously, even if it's improved by the time you get in for your appointment. I found this very useful both for my daughter's rashes...
  13. greenbeanie
    Thanks!
  14. 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. ...
  15. greenbeanie
    The one I have now is a cal-mag-zinc vitamin with 500mg of magnesium oxide chelate. I don't know much about the ins and outs of different kinds, but I've tried several different magnesium supplements and they've all seemed to help.
  16. greenbeanie
    Has your magnesium level been checked? I had this kind of internal shaky feeling, and also hand cramps, for years. Another forum member recommended magnesium, and it made all the difference in the world. Come to find out, a blood test from when I was in the hospital years ago had showed magnesium deficiency, and the doctor hadn't even told me about it. I...
  17. 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...
  18. 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...
  19. 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...
  20. greenbeanie
    I realize this thread is months old, but I just found it and wanted to add something in case anyone reads it later. I'm a 37-year-old woman in the process of getting tested for celiac myself, after having symptoms consistent with celiac for my whole life. After three years of fertility treatments, I finally conceived my daughter through IVF when I was 32...
  21. greenbeanie
    Thanks, Lisa. I'm going in tomorrow to discuss celiac testing with a new doctor who seems to take my concerns seriously, and I am still eating gluten until testing is finished. I'm bringing a list of the full celiac panel tests, a long list of vitamins and mineral I want tested, several factsheets from prominent celiac research centers, etc. I am optimistic...
  22. greenbeanie
    I'm still awaiting a diagnosis (after 37 years of worsening symptoms), so I don't know yet if my troubles are due to celiac or some other digestive disorder - but no matter the cause, here are some stupid things the doctors have told me over the years: Me, as a slightly-underweight teenager: I've had diarrhea and stomach pain after eating every day for...
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