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manasota

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Everything posted by manasota

  1. manasota
    Day #17 post-treatment with Xifaxin. Maybe, a tiny bit better? Not what I'd hoped. At my next appt. in February, I will see what other "tricks" they may have up their sleeves. In the meantime, I plan to try Florajen 3 since sooooo many people on this site seem to love the stuff. Other than that, I'll just keep on keepin' on.
  2. manasota

    ARCHIVED SIBO

    manasota replied to lacey's topic in Related Issues & Disorders

    Hi Lacey, I also tried Xifaxin. It helped some. SCD helped some. Low Fodmap helped some. Low fructose helped some. I still have GI symptoms, Buddha Belly (although it IS less), and overwhelming fatigue. There are plenty of posts on this site about SIBO, Balloon Belly, etc. I have yet to read where someone actually got rid of...
  3. manasota
    Katelyann, I initially found it very sad to have to go gluten free. It helps if you start feeling better. Then you'll start to believe it is worth it. There is no downplaying the social cost. There are ways to work around it. Tricks, if you will. It takes lots of planning. Still, we're all managing. With time, it will get easier. As for...
  4. manasota
    Elizabelle, You might want to give Larabars a try. I seem to remember that the ingredients are simple and more healthful. Going gluten free is a major life adjustment. However, it can be a very healthful diet if you stick to whole foods (nothing processed). By the time you get to my age, you'll be very glad you had such a good diet! Good...
  5. manasota
    I've been gluten free nearly 6 years. Lots of stuff is better; but still not well. I can definitely say that eating whole eggs did make my hair and nails much stronger, fuller, etc. As in 2-3 whole eggs/day. (Certain I'm not absorbing it all.) Certified gluten free supplements didn't do it. Whole eggs did. Maybe you could try an egg a day? I...
  6. manasota
    And I thank you for the support!!
  7. manasota
    Ditto to the idea of sending an email to get tested prior to the appt. Love the documentation and it makes the appt. more valuable since you can discuss the results in person. Cyclinglady rocks!
  8. manasota
    Hi CherylS! Please don't feel slighted! I'm sure plenty of us have read your post but didn't feel we had anything to help you. Your situation is fairly complex and I don't share your issues. Luckily, it does sound like you have good doctors--a HUGE advantage. I imagine somebody with DH will respond and give you some tips about that. There is lots...
  9. manasota
    I'm not certain there are really any "safe" foods that are safe for all. However, I did have the best luck with the SCD diet. It's pretty much a whole food diet--nothing processed. Meat, some veggies, some fruits, some nuts, and a special homemade yogurt that must "cook'' for at least 24 hours. No sugar, soy, grains, caffeine, chocolate, etc. If you...
  10. manasota
    Reporting in regarding my Nov. appointment with the new GI doc. It was EXCELLENT! I was interviewed by both the specialist and by her Fellow. Very, very good listeners. Both demonstrated great understanding of my situation. She was eager to order blood work including a full Celiac panel. Got my results and all tests showed that I am definitely not...
  11. manasota
    Ouch! I really feel your pain. It is very frustrating, sad, and lonely when your close relatives simply do not want to hear the truth. I see that you joined in 2012 and are still having this issue. I'm guessing your Mother will never really hear you. (So very sorry.) Only 1 of my close relatives has been tested for Celiac. The rest of my relatives...
  12. manasota
    Actually, St. Pete is where I was when I became so sick from Celiac that I lost my ability to work! Yep. Lost my job, my profession. I tried everything to get a diagnosis. I heard lots of "That's very interesting; but I don't know what it means." Gosh, I hope I never hear that again! Took me another 10 years and moving to another state to get properly...
  13. manasota
    MissL101, Welcome! Hopefully, you'll be like the vast majority of people on the site who started feeling better pretty quickly and advanced to feeling even better soon--as in weeks to months! I'm assuming you'll be "one of them" since you're only 22. Consider yourself very lucky to be taking steps at such a young age to help your body heal. I realize...
  14. manasota
    Nuts.com only guarantees their tapioca flour for "up to 1 year" when stored in a "cool, dry place". They state it's ok to put in the frig. I do not know if there is something unique about their tapioca flour that requires this exp. dating? Like I said, I have never used it. They do not mention anything about freezing; so I can't comment. I'm a "wimp...
  15. manasota
    Yikes, I wouldn't throw out all your flours! $$$$? I would contact each of the manufacturers and ask about their recommended storage requirements and shelf-life. When you get the info, you could write directly on each package the exp. date (if not already there). I can't offer personal experience because the only flour I bake with is almond flour...
  16. manasota
    Luvs2eat, I think you are brave to post that you're still having trouble 13 years later. It's natural for most of us to have fleeting memories of the foods/things we used to enjoy on holidays. The trick is to not let this control, rule, or ruin your holiday. Take control! You need to develop new holiday traditions. I assume you've tried numerous food...
  17. manasota
    Poshepoche, you most definitely are not alone! I am lucky to be in the USA in a medium size metropolitan area. Yes, there are gluten free processed foods in every grocery store. There are chain restaurants that advertise gluten free options on their menus. BUT. I have never eaten in any of those restaurants; and I cannot eat the processed foods. There...
  18. manasota
    DougE, I see you're in Canada. You'll probably be best served by calling the hospital. If you do contact the manufacturer, be certain to tell them you're having the surgery in Canada. Frequently, meds differ by country.
  19. manasota
    YES! YES! YES! Please contact your congressional reps and senators about supporting H.R. 3648 "Gluten in Medicine Disclosure Act of 2015"! This is something that would be easy and cheap for pharmaceutical manufacturers. There is no reason to not have this. We need it! If you go to Congress.gov, there is a search window that will take you to...
  20. manasota
    Bravo!
  21. manasota
    I just went to glutenfreedrugs.com and could not even find a listing for hydromorphone or Dilaudid (brand name). This is most likely because this medication is only used infrequently at this time. Other pain meds are usually chosen instead. I searched the pain med listing and the alphabetical listing of all classes of meds. Could not find it listed. ...
  22. manasota
    DougE I was a hospital pharmacist. Your best best is to ask the hospital pharmacist before you have the surgery. It is one of their duties to provide you with gluten free medication if you need it. I assume you have Celiac? This will be noted on your hospital record when you are admitted. There is no way to know what generic you will be given...
  23. manasota
    Luckily, my diagnosing GI was very kind and very good. Again, luckily, I only had to wait about 6 weeks for the appointment I'm having this week with the new GI. No idea how I got that lucky. My husband is extremely supportive and even went gluten free with me! Actually, the diet has shown more improvements for his health than for mine. I think,...
  24. manasota
    Karen P, My story is very similar to yours. Diagnosed 5 1/2 years ago and not much better. Went down to 93 lbs & now back up to 108 lbs. I read this website for 5 years before I posted anything. Tried everything. I now eat only meat, some veggies, some fruit, almond flour (to bake "muffins"), olive oil (for cooking), walnut butter, and spices...
  25. manasota

    ARCHIVED New here

    manasota replied to kim01's topic in Coping with Celiac Disease

    KIm01, in your above post you state, "not the best but it works" in reference to the Diet Pepsi. But in your first post, you describe your body as repeatedly screaming that it does NOT work. The things you are doing are NOT working. You won't get a different result until you try different choices. Also, in your posts, you keep thanking us "for...
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