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    I diagnosed myself for gluten intolerance after a lifetime of bizarre, seemingly unrelated afflictions. If my doctors had their way, I would have already undergone neck surgery, still be on 3 different inhalers for asthma, be vomiting daily and having chronic panic attacks. However, since eliminating gluten from my diet in May 2009, I no longer suffer from any of those things. Even with the proof in the pudding (or gluten) my doctors now want me to ingest gluten to test for celiac-no can do.

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    Jefferson Adams
    Celiac.com 01/05/2015 - Doctors recommend medical follow-up of celiac disease patients for gluten-free diet (GFD) adherence monitoring and complication detection. But, what happens to celiac kids who don’t get good medical follow-up?
    A team of researchers recently tried to figure out how the LTFU kids fared health-wise compared to kids who did receive follow-up, and what barriers the LTFU kids might face in successfully following a gluten-free diet.
    The research team included L. Barnea, Y. Mozer-Glassberg, I. Hojsak, C. Hartman, and R. Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva and the Sackler Faculty of Medicine at Tel-Aviv University in Tel Aviv, Israel.
    They had previously shown that 35% of children with celiac disease were lost to follow-up (LTFU), that is, they did not receive follow-up care for their celiac disease. The study team used a telephone questionnaire to assess 50 LTFU patients regarding frequency of follow-up, serology testing, and adherence to GFD measured by validated Biagi score. They had fifty two regular follow-up patients serve as a control group.
    The results showed that the LTFU patients had poor adherence to GFD, with an average Biagi score of 2.0 ± 1.4, compared to control scores of 3.0 ± 1.0 (p < 0.001).
    Only 22% of LTFU performed periodic celiac serology testing compared to 82% of the control group (p < 0.001).
    Fifty percent of the LTFU kids had higher prevalence of positive celiac serology tests, compared to 25% of controls, (p = 0.01).
    Just 24% of LTFU kids were National Celiac Association members, compared with 44% of control kids (p = 0.05).
    Regression analysis showed positive relationships between LTFU and poor adherence to GFD (R2 = 0.26737, p = 0.001), older age at diagnosis (R2 = 0.30046, p = 0.03), and non-membership in a celiac association (R2 = 0.18591, p = 0.0001).
    So, when the dust settled, the study showed that children LTFU were more likely to not follow a strictly gluten-free diet, and to have positive blood tests for anti-gluten antibodies. Accordingly, the team recommends that risk factors for LFTU be identified and addressed in order to improve patient care.
    Source:
    Digestion. 2014 Dec 19;90(4):248-253

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    I spoke with my GI's office on Friday and was told the wait time would be 10 months - I kind of indicated that I wasn't sure I could wait that long and she offered to put me on their cancellation list, said this is the best she can do for getting me in any sooner. The GI didn't tell me to start the gluten challenge, I was not aware of how long the wait time was and started eating gluten on my own decision.  And now that I'm on the cancellation list I have to keep eating it so that if I get
    Im the same, I never know what to eat, some food does better than others for me, I went on to make my own soup and Im glad I did, I should do it more often and at least then J know what's going in to it, it wasn't the best first try but I enjoyed it haha
    Thank you for the advice, in the end I went and made my own soup, not great for my first try but it was better than potentially making myself worse, I enjoyed it, I got some vitamains too to take, I was able to find a liquid Vitamain B Complex, the store I went to was helpfull enough to show me what was Gluten Free.   I fealt awful around then, Im feeling like I have more energy now I can actually do things and focus more, Ill keep on like I have been, Im not 100% and still have some B
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