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floridanative

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Everything posted by floridanative

  1. floridanative
    He talks about no one doing research in the US....no doctors know anything about it. You know everything he says but it's still good to hear it. You have to register but it's free and then you scroll down to the bottom and you'll see Dr. Green pic and you just click on that to listen to the whole interview - must have sound on of course. www.wallstreetreporter...
  2. floridanative
    For those of you who have this book - did you see that Danna Korn reports that there is no gluten in envelope glue but that is one of those rumors that just won't die? I'd like to see the published proof that says the glue has gluten - if in fact it does. If anyone can point me to that info I'd greatly appreciate it. I know there are a couple of rumors that...
  3. floridanative
    The only thing I'd add is that when dining out - if you choose to do so - I would make sure whoever you are talking to about your meal/prep knows you are not on a fad diet but indeed you will get sick if you ingest gluten, even in tiny amounts. If someone thinks you're going gluten free 'just because' (like some healthy people are doing now) they won't be...
  4. floridanative
    tiredofdoctors is right. Raise total cain until someone gets a grip and lets you have the test. I have come to find out that there is not much worse in our culture than insurance companies. They are the driving force behind all the bad medicine we are all experiencing - from everything to sinus infections to Celiac disease being misdiagnosed. For my...
  5. floridanative
    I would say maybe try and get into Columbia Univ. in NCY if at all possible. Their Celiac research program is probably one of the top five in the US. But then the wait for that might be even longer, I don't know. I hope you get the answers you are looking for soon. But like jerseyangel stated - if you really want the biopsy, you have to keep your child on...
  6. floridanative
    Besides my Mother being dx'd recently due to mine, I'm pretty sure her only sibling, a sister, has Celiac and the gluten affects her brian instead of her intestines since she was dx's as a paranoid schrizophrenic when she was 30 and she was always mental as a child. Researchers now think many such patients can greatly improve when put on the gluten free diet...
  7. floridanative
  8. floridanative
    celiac3270 - you changed your font for us old folks to read like I asked - thanks!
  9. floridanative
    But guess what? Pillsbury told Lani (Clan Thompson) they don't test for barley in their ready-made frosting and will only call out wheat on their labels. So Lani does not Pillsbury on her safe list either. She is still looking for other brands that are safe to add to the list. If you didn't get sick from Pillsbury my guess is it could be gluten-free but of...
  10. floridanative
    I forgot to include some info about gluten-free Bakehouse stuff being discontinued. It is not going away which was a rumor earliet today on another Celiac forum. They pulled it from some Canada shelved due to some label problems. Lee Tobin said that will be resolved soon but he also said they are about to introduce sourdough bread and hamburger buns. I can...
  11. floridanative
    What is wrong with these food manufacturers????????? On the new Clan Thompson list the Duncan Hines frosting called Homesytle that used to be gluten-free is no longer listed as such. I contacted Lani and she said in Feb. they told her they ae now adding Barley Malt. Great. It is at least listed that way and the can I have in the fridge is okay as the stuff...
  12. floridanative
    Interesting - thanks for posting. This looks different from Dr. Fessano's test which uses urine/blood and silava as well. His test is not out yet in the US.
  13. floridanative

    ARCHIVED Gi In Florida

    floridanative replied to floridanative's topic in Doctors

  14. floridanative
    edited
  15. floridanative
    I too have only been to Bermuda pre dx but the good thing about it is that Brittain owns it and as they have tons of Celiacs there maybe this applys to Bermuda as well. That means when you do eat out you may not get those 'what are you an alien' looks from the server. I did notice eating in town for lunch fish and chips was a big seller but each place also...
  16. floridanative
    mamaw - Great Harvest will not ship anywhere that is not a 1-2 day ship using UPS ground. To find out what shipping service you'd have, go to ups website (www.ups.com) or call 1-800-PICK-UPS and you have to give your zip code and the bakery's zip. Then they tell you how long it will take for ground packages. The bakery could probably ship overnight but not...
  17. floridanative
    I eat out about once a week, but only started doing so after figuring out how to do so safely at home for a month, and then I learned how to eat out that way too. To say it takes a lot of work to eat out safely is an understatement but if you really want to do it you can. In my case it wasn't an option as eating out and travel are both huge parts of my life...
  18. floridanative
    What about University of Maryland program that Dr. Fessano used to run??? Surely they have several good Celiac docs there....or are you not in the part of Maryland?
  19. floridanative
    I hate to be so prejudiced but the only really great male doctor I've ever seen was a neurologist. I think I will ask the new GI what the best way to find a good doctor is. After all, I think there are about 10 renowned GI (Celiac) docs in the whole country. Obviously this is a huge problem.
  20. floridanative
    Bless his heart - and your too. Well don't worry, it's difficult at first but there are so many wonderful things he can have you should worry about him gaining too much weight from all the great gluten-free stuff. Good luck to you. It will get easier. I'm only three months in and it's already easier than when I started. Mostly due to the people right here...
  21. floridanative
    Well I was thinking if we did it in DC (free museums you know) we could march on the mall and get some news coverage for our cause but I guess we can try and get the coverage no matter where were are. Now is it Maryland everyone is thinking about now? Sorry I'm confused after skimming the posts so fast.
  22. floridanative

    ARCHIVED Gi In Florida

    floridanative replied to floridanative's topic in Doctors

    Don't put ideas in our heads Lynne. Before you know it we'll be planning a Celiac party in Louisville!
  23. floridanative

    ARCHIVED Gi In Florida

    floridanative replied to floridanative's topic in Doctors

    Puleeeeeeeeze! Don't get me started on the subject of why these idiots are so reluctant to dx people with Celiac. In fairness most docs only know how to write rx's and send you on your way in 8.2 minutes of whatever the average approved time per patient is these days. There is to date no pill for Celiac so therefore they are not up to date on the disease...
  24. floridanative

    ARCHIVED Finally Found A Keeper!

    floridanative posted a topic in Doctors

    edited
  25. floridanative

    ARCHIVED Gi In Florida

    floridanative replied to floridanative's topic in Doctors

    Well acutally latest stats are 1/100 have it. Mother is looking for someone to tell her she doesn't have Celiac. I know she has Celiac (both the bloodwork and tons of symptoms backs me up) but she's over 60 so she can do what she wants. Being sick for so long has made her terribly negative and she has lots of food issues so that doesn't help either...
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