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    • trents
      Your story is one shared by many of us in the celiac community, Staci. Unfortunately, many of us lived for decades with celiac disease before we got a diagnosis and by then there was significant, sometimes irreversible, damage done to body systems. Fortunately, knowledge and awareness about celiac disease within the medical community and within the general public has improved significantly in the last couple of decades but there is still a long way to go. Too many physicians, especially those who have been out of medical school for many years, are pretty ignorant of the true prevalence and the range of symptoms associated with celiac disease. They are only looking for classic GI symptoms. May we ask your age? One thing that would be helpful for you would be to start taking some high potency vitamin and mineral supplements to compensate for the malabsorption problem created by long term undiagnosed celiac disease. I'm talking about more than just a multivitamin product. In situations like yours we commonly recommend the these supplements: sublingual B12, high-potency B-complex, 5-10,000 IU D3 daily, magnesium glycinate, and zinc picolinate. Make sure all are gluten free. This might be helpful in getting you off to a good start in eliminating gluten from your diet:  Do you have the option in your healthcare system of seeking out another physician who might be more current on celiac disease support?
    • trents
      Yes, there are slim chances that his positive antibody ttg-ab IGA score is due to something besides celiac disease. But usually when that is the case, the antibody score is a weak positive.  But consider the dilemma you will be in if your son goes gluten free now and there is a good amount of time that elapses before the biopsy (if the GI specialist wants to do that) and the biopsy is negative. You then will be presented with conflicting test results. Which will you believe? From the article I linked in my first post, concerning the reliability of the ttg-ab IGA serum test for celiac disease:  The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.
    • ShRa
      Thanks @trents We are still working on accepting that he has to be gluten free all his life. And this reality is also hitting him badly.  As this was only the serum based results and biopsy hasn't been done yet, are there any slim chances that he might NOT have Celiac disease? I've messaged his doctor to confirm one more time if he should go gluten free now or wait until he sees specialist. Thanks.
    • jjiillee
      My daughter,17 was getting stomach pains off and on for months. Went to pediatrician, bloodwork came back showing TTG-IGA 5.3 weak positive. Told to follow up with gastroenterology, continue to eat gluten. Can’t get appoint until end of Jan (we are on waitlist also), called back because she was still getting pains and nurse said to let her try to go gluten free for a few weeks and see if she feels better. She does feel better. My question is should I let her stay gluten free until the end of January and see what the Gastro says? I know she will have to be eating gluten before she has any further testing, but that is likely months away at this point.  
    • Pat Denman
      Many years ago, there was a doctor who recommended never eating the same food within 5 days. Also recommended greens only 2X per week. Can't remember his name. Dx Celiac at age 87 by self as where I live in the northwest of Idaho, there is no medical insurance which covers Celiac disease or even will pay for tests!
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