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My Experience

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It all started around April of '04 with Pancreatitis. That was just cause my bile duct was connected too high up inside my body. I had and ERCP, the doctors fixed that by putting in a stint and a tube to help drain the bile. I had another ERCP to remove those stints and too put in a smaller one. But as those pain went away others came into play. The doctors finally checked my liver enzymes to find out that those were elevated. Around the month of July we were informed of Celiac Disease and the Gluten-Free Diet, so we tried it. But we soon found out that there are so many hidden sources of gluten.

Over the past 6 months I have had 3 ERCPs, over 25 blood test and over 10 doctor visits or check-ins for the hospital. I've lost over 50 pounds while being sick. For the beginning of my life I didn't have celiac disease, it was to believe to be triggered by the pancreatitis.

I am a 14 counting down to 15 in a few months (2/14), I attend High School and the school Marching Band. I want to know if anyone else was unusually diagnosed with celiac disease and if anyone lives in the Raleigh, North Carolina area.


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    • Hi Doit, The reference ranges to the right of the test result show the values the result ought to be in for normal readings (no celiac disease).  Your results appear to show no higher than normal results that I can see. However, you aren't following the recommended process for celiac disease blood testing.  The blood test is supposed to preceded by 12 weeks of daily gluten eating.  That is generally enough time to cause a sufficient quantity of antibodies to build up in the blood stream to be detectable by the tests. Not having antibodies in the blood stream doesn't mean you aren't being damaged.  People with DH (dermatitis herpetiformis) sometimes test negative on the standard blood tests.  My theory is possibly because the antibodies are concentrated in the skin instead of the blood.  In gut damage, it is possible the antibodies are concentrated in the gut, instead of the blood.  After some time they show up in the blood also.  The thinking is the antibodies go where the work is.  Anyway, theories aside, it takes very little gluten to kick off an immune response.  Those antibodies are not aimless soldiers.  They start doing their work and destroying gluten and gut tissue even if you don't feel symptoms.  Did you know there are some people who have no GI symptoms of celiac disease but still have it?  They call that silent celiac.  So going by symptoms is not a good way to judge actual damage in the gut. You are wise to go in for followup testing, but the followup testing is hopefully to show compliance with the gluten-free diet, and lower antibody test results.  Have your close family members been tested for celiac disease?  It sounds like they should be.   There is a 5% higher chance of them having celiac than the general population. Welcome to the forum!
    • Thank you!  I emailed the company too but the last time I did that with one I never heard back.  I hate to chance it but could use some relief!
    • Hey all, I'm new here but not new to celiac. Wheat intolerances are all over the place in my family  as well as AI thyroid issues (Hashis). When my CRO and ESR rates were extremely high, my doctor suggested it could be gluten/dairy and I was gluten free for the better part of a year. I've been tested in the past twice, once with a "false positive" and one totally negative. Going gluten free didn't help my inflammation rates go down (they went up actually) and I became more lenient with my diet recently because of the nature of my work (I'm a chef), with little negative effect. At my last appointment, I confessed to having had eaten gluten with no real issue for the past several weeks, and when the doctor prescribed other blood work I wanted a celiac panel "just in case" but we both agreed they'd all be negative.  WELP I just got my results back via email, and the primary panel came back all within normal range, but the celiac reflex panel came back positive  my results are posted below  I've googled what a celiac reflex panel is and haven't come up with anything, I've searched these forums and others and can't find anything that even really explains what this test is. I'd love some help understanding the different tests as well as my results. Thank you in advance!        Ps, it looks like my crop job lopped off the top result, but for those who can't tell, the result is Anti-Gliadin Ab Iga 7    Thanks again!      
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    • No gluten ingredients (click on the "+" next to "description" to expand that section and see the ingredients).  But this doesn't say anything about possible contamination.
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