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moonunit

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

Everything posted by moonunit

  1. moonunit
    I've been keeping one because I'm still undiagnosed and don't know what the long-term effect of the diet will be at this point. I use a spiral notebook and write down the time, then the food, or the time, then the "outgo" (along with characteristics of it, though that's in a code so that nobody who grabbed the notebook by accident would be too grossed out...
  2. moonunit

    ARCHIVED Dreams

    moonunit replied to Random Guy's topic in Coping with Celiac Disease

    That is SO WEIRD -- I just had a gluten dream last night! I was working at a location where we were on-site somewhere and we ate and slept there, and the fridge was full but every single thing in there had gluten in it. Cookies, cake, etc... and then someone came up with POP-TARTS and was telling me how great they were, a new variety with chocolate chips...
  3. moonunit
    Where and when did you grow up? I have a knack for searches and maybe I can find something...? You can PM me if you'd rather not announce that info.
  4. moonunit
    Hey, guys! I haven't been on this site too long but I might be able to help you as well... a couple things to note: 1. There is a sort-of conventiony thing happening in Los Angeles next month (May 20th, same day as the San Diego walk, huge bummer because I can't decide which to attend) but they might be good to hook up with and talk to about getting...
  5. moonunit
    I'm still really new at this, but I've found that a couple things have helped me to explain it to family so far: First, I joke about it a little in a self-deprecating way and say that I'm "being militant" about the diet and that yes it sounds nutso but (in my case, not having been diagnosed) the only way to be sure that I'm not getting any gluten is...
  6. moonunit
    Another shout-out to Outback here... went there last night. I had printed the gluten-free menu off their web site but I asked for one when we got there anyway (just to sort of raise awareness and to show appreciation that they had them on-site). The waitress brought the menu with no surprise or confusion at all. When we all ordered, she was reading...
  7. moonunit
    Thanks for the support! Yes, basically at this point I'm at three choices: Enterolab, find a local expert doctor, or just trust the diet if it works (so far it's been 6 days and I do feel a little bit better but I need to discount possible placebo effect). I'll give it the whole three months and step up the strictness to better avoid cross-contamination...
  8. moonunit
    I'm just feeling a need to vent. Again. I did write a long scathing letter to my primary care doc and probably won't send it, but it sure felt good to write (it has multiple footnotes and sources and all kinds of stuff in it!) I dread changing primary care docs again, switching gastros, trading known jerks for unknown possible jerks. There's no guarantee...
  9. moonunit

    ARCHIVED "celiac Isn't Hereditary"

    moonunit replied to Emme999's topic in Doctors

    I am so sorry for your troubles, but can I just say, this made me laugh like a looney! I think there would be about eight doctors left if you "took out" the ones who refuse to diagnose/treat/listen. I know it's not nice to wish violence against others, but it's good to be able to laugh, too. Good luck with your attempts to get some answers! Let...
  10. moonunit
    It's in San Diego on May 20th. I plan to be there and bring as many friends and family with me as I can get!
  11. moonunit

    ARCHIVED First Gi Appt Today

    moonunit replied to Megan's topic in Doctors

    Hi! I didn't reply before because I figured I'd be too late for a "good luck" to matter, but good luck anyway! How did it go? The only piece of advice I would have maybe suggested is to know before you go what the latest procedures and tests are. My primary care was VERY convincing and adamant that her information was correct and mine was wrong...
  12. moonunit
    Another decent site to refer doctors to is the William K. Warren Medical Research Center for Celiac Disease. It's affiliated with the University of California San Diego, and it's pretty new. Main site: Open Original Shared Link FAQ for doctors: Open Original Shared Link The FAQ for doctors is basically the same one as the FAQ for...
  13. moonunit
    Hi there! Your story is very similar to mine -- I'm on day 3 of a gluten-free diet after positive bloodwork but a negative diagnosis. My doc also only took two samples to biopsy, though the recommended from Columbia University is 4 to 6. The UCSD medical research center suggests at least 6. Here are a couple links telling us without a doubt that the...
  14. moonunit
    I've been wondering the same thing -- I've seen that you can't do blood tests for kids under age 2 but the Enterolab I think does stool tests for younger. I don't want to put my kids through the incredible hassle of the gluten-free diet if I don't have to, but I don't want to wait until there's really horrible damage and THEN say "whoopsie" and put them...
  15. moonunit

    ARCHIVED Quote Of The Day

    moonunit replied to moonunit's topic in Doctors

    Hi Dad, I didn't know you joined the board! Hehehe! You gonna go get the blood work done from a reputable ACTUAL doctor now, or do I have to sic these guys on ya? (Oh, and just to stay on topic, I'll add a new quote from yesterday... "If I had known you'd get in so quickly to have the biopsy done, I never would have ordered the blood test for...
  16. moonunit
    Now that I've had a chance to look at my lab work without being afraid I'd catch the paper on fire with my eyes glaring at it so hard... The Gliadin Antibody IgA came back 33.3. The Gliadin Antibody IgG was 3.2. The biopsy was done on two samples, or the lab reported receiving two tissue fragments, anyway. (I've read that 15 is what you need, but...
  17. moonunit
    Thanks, you all are great. I'm just so mad! Why are doctors allowed to do this? Shouldn't there be some penalty for a doctor handing you a positive lab paper and saying "you don't have this disease"? I'm not saying a class-action lawsuit is necessary or anything (not that it didn't cross my mind as I was fuming on the way home) but this is going...
  18. moonunit
    Okay, I know, there are lots of vents on this board, but I need to add this one. Blood test positive, biopsy negative, gastro a complete jerk who decided prior to the biopsy that positive blood work meant nothing and didn't need to take a history to tell that I didn't have celiac disease. Has someone call me to tell me that I need to meet with my primary...
  19. moonunit

    ARCHIVED Quote Of The Day

    moonunit replied to moonunit's topic in Doctors

    Wow, these are outrageous! In a totally sad and disgraceful way, of course... I just knew there were some doozies out there to be heard. Professional writers couldn't make this stuff up. It baffles me! I thought of another one. My nurse when I was waiting to see my primary care asked what I was there for, and I said that I had a family history and...
  20. moonunit

    ARCHIVED Quote Of The Day

    moonunit posted a topic in Doctors

    Okay, I think we need a quote thread here, because every once in a while I see a doozy and wish we had them all in one place so that we don't start feeling like we are the only ones with brainless doctors out there. My own story is in the "pre-diagnosis" section if you want to know the background, but basically my current status is that I do not have...
  21. moonunit
    Thanks, guys. You make me feel better. I'm going to talk to my primary care next week (she has a very heavy Chinese accent so I am assuming, perhaps incorrectly, that she was trained outside the U.S. and maybe that's why she took me so seriously). I'll bring all my stuff that I've printed out from the web, nice valid sources like Columbia U and the...
  22. moonunit
    Hi, I wrote a while back on another thread about my situation, but I have more information. Here's the deal: 1993 bowel resection, pathology lab says Crohn's. I take 12 pills a day for the next 9 years, which seem to do nothing but I take them dutifully. 2002 I ask for a colonoscopy from a different gastro to confirm Crohn's diagnosis. He says...
  23. moonunit
    Just a quick update on the Keith Famie thing -- I've actually been e-mailing back and forth with him in the last couple days. He's not sure whether the gluten-free cookbook/Elisabeth project would be do-able, but he's been asking questions about how the whole celiac dealie works (like, are some wheat products better/worse than others, things like that)....
  24. moonunit
    You guys got me thinking... Elisabeth Hasselbeck... Survivor... who could help her to eat gluten-free? Aha, how about Keith Famie, the chef guy from her season on Survivor Outback and currently on Food Network? So I went to his web site and wrote him an e-mail suggesting that they could do some wonderful things by considering making a gluten-free cookbook...
  25. moonunit
    Hi, this is my first post here! I'm in an odd situation, but maybe you guys have heard this story before... I had a blood panel last week and on Monday my primary care said I tested positive for celiac sprue and to go on the diet immediately. She set up an appointment with a gastro. I called the gastro and said "don't I need to wait to start the diet...
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