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Gluten-Free And It Helps. I Think.


Squidge

How long Gluten-free before you felt better?  

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When I was born, the doctors told my parents I had "failure to thrive". I was tentatively diagnosed with ADHD when I was 4, and this was confirmed in 1st grade. I was perfectly fine, on ADHD meds, until 8th grade, when puberty, clinical depression, and digestive problems hit. My doctor first diagnosed the digestive issues as IBS, as this is apparently common in adolescents going through puberty. However, unlike the digestive problems of the other adolescents who actually had IBS, mine didn't go away. They got worse. So did my periods and PMS. Seven years later I finally went back to the doctor about this. For the last six months I've been poked and prodded being tested for all sorts of things, from hemorrhoids to Crone's disease. They finally tested me for Celiac's. I'd like to point out that not all my symptoms fit Crone's or hemorrhoids, but they all fit Celiac's. I'm rather upset given my history that my mother actually had to tell my doctor to test for Celiac's. He'd already given up. Anyway, the blood tests came back negative, but I heard the this is actually quite common even among people who have Celiac's. Out of desperation, I went gluten-free and for the first couple weeks I felt much better. Then I got my period, and all hell broke loose again. Now that my period is over, I'm feeling better again. I also accidentally ate gluten 3 times since I went gluten-free and each time I had pains and the 3rd time worse than pains. How long should I go before I talk to my doctor about my little gluten-free experiment? I mean I've had good periods before with a few bad days sprinkled in, and they usually happened with the period suddenly causing havoc. How long before I can say the gluten did it? I want to get an actual diagnosis, because I have to try and get accommodations at school for the food, and they'll give me a hard time if I don't have a diagnosis. When should I go to my doctor, and what should I say?


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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
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    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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