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floridanative

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Everything posted by floridanative

  1. floridanative
    Karen is absolutely right! I myself don't have the energy to even call BS/BS and be on hold for thirty minutes to see who I should write. I feel good, just overwhelmed trying to change my whole life on a dime. I'm not shirking my responsibilites here, just saying that even though I started this thread (mostly to help you who had it so much worse than me)...
  2. floridanative
    This too is confusing to me. I went through the Delphi list highlighting all the things I normally buy that are safe. So I read every word carefully and there are some blue cheese items listed from various manufacurers - some were listed as safe and others not. At the one support group meeting I attended last Fall they brought this up and most everyone seemed...
  3. floridanative
    Thanks Richard - yes I've run about 20 pots of coffee through it since I made the barley stuff back in Dec.
  4. floridanative
    Only being gluten free for a week, I think I'm doing pretty good. Since we already eat so many natually gluten-free foods, the biggest change to our new diet was switching to gluten-free pasta and pancakes. However today I realized that a couple months back I got some Tecchino (sp?) which is a natually decaffinated coffee type drink. You run it through your...
  5. floridanative
    I think the previous poster makes an excellent point. I do think that we need to be proactive in trying to do something to fix the problem but the question is what? I've been to the ER once b/c my hubby took me against my will so to speak. I had a bad sinus infection but I'd been to the reg. doc two days prior and she said I had allergies. Since I have suffered...
  6. floridanative
    Let me start by saying that I too was horrified to think about going on the gluten free diet. That was back in Sept. when my GI first mentioned it to me. When I finally got the formal diagnosis last week, I cried and then I started my new gluten free life that night at dinner. We eat healthy anyway (not tons of packaged stuff) so I may have it easier than...
  7. floridanative
    I e-mailed GMA and begged them to repost the video so others can see it. I have a client who is trying to help a friend so I wanted her to be able to see it. Anyway, I did find another video that maybe you all know about already buy I didn't. It came up in a Yahoo search. It's Open Original Shared Link and it's very informative indeed so we can refer people...
  8. floridanative
    Just wanted to say that the GMA exposure did a LOT for us, more than I imagined. I have a client who remembers seeing the story but didn't write down the name so she was thrilled I could tell her about it. She needed the info for a friend's daughter who has had every test in the book - for stomach aches - to no avail. Anyway, I sent her the links to the NIH...
  9. floridanative

    ARCHIVED Restaurants

    floridanative replied to Miki's topic in Gluten-Free Restaurants

    Well luckily I got a whole list of safe restaurants that other Celiacs have had success with (her ein town) from my support group. Many of them are high end of course which is fine for the 20th anniversary of our first date (Valentine's day) after all. Certainly I will go very well prepared and I'm not shy about ordering whatever I want or in this case need...
  10. floridanative

    ARCHIVED Restaurants

    floridanative replied to Miki's topic in Gluten-Free Restaurants

    Wow Broncobux! Thanks for all the info. I ordered the Triumph dining cards so hopefully I will be educated enough to eat out for Valentine's day dinner.
  11. floridanative
    I know!!! I'm glad I'm not just being overly critical of him. I'm not even mad at him at this point since this new lifestyle takes up so much of my energy right now. But just think of someone like my mom for instance being told this. She would have had two platefuls of pasta for dinner that night!
  12. floridanative

    ARCHIVED Restaurants

    floridanative replied to Miki's topic in Gluten-Free Restaurants

    Well since I don't have the bad GI sypmtoms anyway, I won't be giving up any foods (more than necessary of course). If something starts to make me sick I'm going to keep info in a diary so I'll be able to figure out what the culprit is. But my main problem is that I don't think I'll know when I get glutnend by mistake, thereby making it much scarier to me...
  13. floridanative
    Thanks AmandaD. When I think back at how I had to trick the doc into doing the biopsy by saying that I'd just go back to the first GI and get him to do it, I realized that if someone less headstrong than I had been sitting in his office, they would have left happily with the untrue knowledge that they didnt' have Celiac and continued to get sicker. Once he...
  14. floridanative
    On my previous rant I forgot to mention something ridiculous my GI said when he called with my results. After reading my biopsy test results over the phone to me stating my case is classic Celiac Sprue, he said the following: The question now is should we treat you with the gluten free diet, even though you are not presenting with the gastro symptoms. ...
  15. floridanative
    Sorry to add to the confusion but my tTg was only a 10 in Sept. (doc said probably have Celiac) and only a 7 in Nov. (2nd doc said no way I have Celiac) so I went to a 3rd doc to break the tie. He looked at both test result labs and said my number wa coming down, not going up, so I don't have it. Insisted on a biopsy b/c other 2 docs said I needed it. 3rd...
  16. floridanative
    Being the one who started the 'Let's get on Oprah' thread, I'm all about getting the word out about Celiac disease. I planned to continue the Oprah (or other media) campaign regardless of my test results since I do not think what so many of you had to go through is acceptable in any way. However, I think we face a larger dilema here. I did hear about Celiac...
  17. floridanative
    That is the best news I've heard in a while! Congrats to you that all your hard work paid off. You give people like me (gluten-free for only a week today) hope that this can be done and in the end it will be worth it. Side note regarding follow up visits regarding progress. My ex GI that called with my results last week said to call in June to schedule...
  18. floridanative
    This is the week for M and N. I don't care who you write/pester. Just please do your part to get the word out. Remember if everyone who has Celaic gets properly diagnosed, we all benefit greatly with more safe, tasty and less expensive food choices. That fact alone is enough to keep me going until everyone (who has access to main stream media in US) has at...
  19. floridanative
    I urge you to follow the diet if you get Celiac dx. I too had anemia and only my tTg level was high. But right before my biopsy (which comfirmed Celiac) I started having dizzy spells and I fell down my own stairs twice in a week. That alone scared me enough to do the diet, even though I, unlike most others you'll find here, don't have most of the common GI...
  20. floridanative
    So far I know that it's easier to eat out safely in Italy and in London since the condition is so much more dx'd there. Never thought the US would be so far behind other countries in any healthcare issue.
  21. floridanative
    I'm in the same boat with Lisa. Not about looking for a church actually but being dx'd only a week I'm in no way prepared to go to a Super Bowl party at someone's house whom I've never even met. I can hear it now. Hi - thanks so much for inviting us, oh and I can't really eat anything here just in case it has gluten in it so I brought my own food, which by...
  22. floridanative
    Monica makes an excellent point. My worry is that we'll end up getting the media exposure to Celiac that we're all hoping for and still doctors won't listen to the people who hear our message. I'll post a topic later on Publicity thread asking you for ideas on how to get the word out to the doctors - seems they need it as much (if not more) than the patients...
  23. floridanative
    Thanks SOOOOOOOO much for posting that site! I feel like maybe my life as I once knew it, is not completely over.
  24. floridanative
    I continue to be horrified reading all these unbelieveable posts about all of you who got so sick, without getting the proper help. Obviously compared to all of you, I have nothing to complain about. My journey has been a walk in the park in terms of length of diagnosis. Never though I'd be happy to say that only two doctors made me feel like they thought...
  25. floridanative

    ARCHIVED Restaurants

    floridanative replied to Miki's topic in Gluten-Free Restaurants

    Thanks goodness I saw your post Packard. I was beginning to think I'd never be able to eat out and travel again without such worry that it would not be worth it. Travel is a huge part of our lives as is eating out. Still processing the info that I do have Celaic (dx's 1 week ago today) so obviosly haven't attempted eating out yet. My goal is to go out for...
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