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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    I can smell the TV too, and I hate it. My sense of smell is ridiculously sensitive in general, and it's very annoying. People used to think I was making it up because it seemed so unlikely that I was actually smelling the things I claimed to smell, but the smells have been verified enough times now that I know it's accurate. For example, I'd comment on the...
  2. greenbeanie
    My four-year-old daughter had three positive celiac blood tests (all the ones they ran) and is having an endoscopy this week. I want to second Jtoz54's thought about salicylates. It's been clear that my daughter had a food-related problem since early infancy (even when exclusively breastfeeding), and I tried all sorts of dietary changes before we thought...
  3. greenbeanie
    Thanks, everyone. That makes sense, pricklypear: I have half of a celiac gene. I need to brush up on my chemistry and biology... I am 1/4 Irish. I'd be interested in that article, stanleymonkey, if you happen to come across the link. Prometheus Labs, unfortunately, will not discuss results with patients and will only release the info to doctors. I hadn...
  4. greenbeanie
    We were told that my daughter had abdominal migranes due to anxiety. This was at age 3, and she'd been complaining of stomach pain since she learned to talk. I never bought the abdominal migrane idea - it was obvious to me that her anxiety/fussiness was the RESULT of the pain, not the cause. We knew the problem was food-related, but we could never quite figure...
  5. greenbeanie
    My daughter had one small serving of wheat per day (the equivalent of a few crackers, multi-grain cereal, or a small bowl of pasta) for four weeks before her blood tests. Once in a while she had two servings, but not often. We had all been gluten light for her entire life, so even one serving daily was more than she was used to (and her behavior deteriorated...
  6. greenbeanie
    They got us in for an appointment with the pediatric GI doctor in four days, and they've already scheduled the endoscopy for the day after that! Things are finally looking up. Thanks for your support, everyone. I am not worried about the difficulty of a gluten-free diet at all - I know it will be challenging when we travel, but it will be so much less of...
  7. greenbeanie
    I seem to be one of those people with test results that are always confusing. I'd thought I understood how genetic tests work, but the interpretation on the form from Prometheus Labs does not match other things I'd read. My results: "One allele (HLA DQA1.05) detected of DQ2.5 halotype detected. HLA DQB1.02 not detected." That made sense so far...but then...
  8. greenbeanie
    Hooray! I know this is just about the only group of people on the planet who can understand why I'm so HAPPY to get positive results! After years of knowing something is very wrong with my child but having no answers, my four-year-old's blood tests all came back clearly and obviously positive: TTG-IGA: 65 (over 4 positive) DGP-IGA: 69 (over 20 positive...
  9. greenbeanie
    I got negative results from a partial celiac panel last week, though total IgA wasn't included so I don't know how much to trust the results. Anyhow, I hadn't realized that my doctor also ordered the celiac genetic tests from Prometheus Labs. I only found out because I received a letter from Prometheus about insurance billing. The letter said that the results...
  10. greenbeanie
    Unfortunately I don't have answers to your questions, but I hope they figure out what's wrong soon. It sounds like you're being a great advocate for her healthcare. My mother has had leukemia for almost 20 years and has been through three rounds of treatment that left her weak for several years each time, in addition to having strange unexplained neurological...
  11. greenbeanie
    We are currently awaiting the results of my four-year-old daughter's celiac tests, so I'm not sure yet what is related to what, but she has had similar problems with her knees since she was a toddler. The first time it hurt her so much that she couldn't even stand up, and she couldn't talk yet so we had no idea what was wrong. An x-ray was clear, but she...
  12. greenbeanie
    Were your previous tests just blood tests, or did you also have an endoscopy/biopsy done too?
  13. greenbeanie
    I thought I'd post something happy for once... After six months of trying to find a good PCP for my four-year-old daughter, we finally met with a superb doctor yesterday who actually read her health history and agreed that we do have legitimate concerns about the ongoing digestive problems she's had since infancy! I'd been seriously discouraged because...
  14. greenbeanie
    Thanks. I am going to continue eating gluten until my GI appointment in 3 1/2 weeks, though that seems pretty overwhelming right now. I'm certainly never going to go through this again, so I'll do whatever I can in the short term to make sure the tests are accurate. I have had horrible, itchy, blistering/oozing rashes since childhood too, often over large...
  15. greenbeanie
    I got my blood test results today. The doctor only ran a partial celiac panel, despite the fact that I'd brought in the complete list of test and also highlighted the list on a factsheet from the Chicago Celiac Center. My results: TISSUE TRANSGLUTAMINASE AB, IGA: <1 (with normal as <4) GLIADIN (DEAMIDATED) AB (IGA): 3 (with normal as <20) GLIADIN...
  16. greenbeanie
    Well, nice to know I'm not alone, at least! I did get some blood test results today - I'll post that on a separate thread. I'd also requested vitamin level tests (incl. B12, K, magnesium, zinc, and copper), but my doctor wouldn't run them. Hopefully the GI doctor that I'm seeing next month will agree to run the vitamin and mineral tests.
  17. greenbeanie
    This sounds strange, but I'm only 37 years old (female), and prematurely greying hair does not run in my family. I've been doing a gluten challenge for the last month, and I swear that I'm getting a dozen new grey hairs every day. It's definitely not my imagination - others have noticed my hair changing color too. My hair is normally dark brown, and it...
  18. greenbeanie
    My daughter was also referred to an allergist and a GI doctor at the same time (as an infant), and my advice is to make sure the two doctors don't both push off the responsibility for figuring out what's wrong to the other! We had an excellent allergist who clearly recognized that my daughter had a food-related problem, and she was the only one of all...
  19. 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...
  20. greenbeanie
    Update: I just wanted to follow up with what happened at my visit this morning, in case anyone finds this thread later and wonders about the outcome. It was a productive appointment, but it's very good that I took the initiative because there was indeed a misunderstanding. Based on what I'd said at my last visit, my doctor had intended to order the blood...
  21. greenbeanie
    Thanks for your reassurances, everyone. She probably did just write that as the closest code to my symptoms, without intending it as an official diagnosis. Hopefully if she actually suspected celiac, she would have mentioned it to me! I do know that she wrote the code herself because I saw her write it on the visit summary paper before she copied it for...
  22. greenbeanie
    I am beyond frustrated and don't know whether I should be happy or angry about this. As I've mentioned in other posts, I'm a 37-year-old woman who's had symptoms consistent with celiac my whole life, but it was always brushed off as stress, anxiety, or "fast metabolism". I just switched PCP's and saw my new doctor for an intake visit and routine physical...
  23. 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...
  24. 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...
  25. greenbeanie
    Thank you all so much for your kind words. I will definitely bring a list of questions, and a list of tests to request. Surely the new doctor will at least be willing to refer me to a dermatologist, so that might be another route to a diagnosis. (I've never actually seen a dermatologist about the rash since I was a little kid - my last few primary care doctors...
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