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  • Jefferson Adams
    Jefferson Adams

    Mortality Rates for Celiacs with Persistent Villous Atrophy Similar to Those with Healthy Guts

    Reviewed and edited by a celiac disease expert.

    Celiac.com 02/06/2013 - Villous atrophy (VA) in the small intestine is one of the prime features of celiac disease, and has been associated with increased mortality, but it is unknown if mortality is influenced by mucosal recovery.

    CC--Leo ReynoldsTo better understand the relationship between mucosal healing and mortality in celiac disease, a research team set out to determine whether persistent villous atrophy is associated with mortality in celiac disease patients.

    The research team included B. Lebwohl, F. Granath, A. Ekbom, S.M. Montgomery, J.A. Murray, A. Rubio-Tapia, P.H. Green, and J.F. Ludvigsson. They are variously affiliated with the Celiac Disease Center at the Department of Medicine of Columbia University College of Physicians and Surgeons in New York, NY, the Clinical Epidemiology Unit at the Department of Medicine of Karolinska University Hospital and Karolinska Institutet in Stockholm, Sweden.

    The team used biopsy reports from every pathology department (n = 28) in Sweden to identified 7,648 individuals with celiac disease, which they defined as the presence of villous atrophy, and who had undergone a follow-up biopsy within 5 years of diagnosis. They used Cox regression to assess mortality according to follow-up biopsy.

    Celiac patients were 28.4 years of age, on average, and 63% were female. The average follow-up after diagnosis was 11.5 years. Overall, patients who underwent follow-up biopsy had lower mortality rates than those who did not undergo follow-up biopsy (Hazard Ratio 0.88, 95% CI: 0.80-0.96).

    Of the 7648 patients who underwent follow-up biopsy, 3317 (43%) showed persistent villous atrophy. In all, 606 (8%) patients died. However, patients with persistent villous atrophy died at about the same rates as those with mucosal healing (HR: 1.01; 95% CI: 0.86-1.19).

    Also, children with persistent villous atrophy showed no increase in mortality (HR: 1.09 95% CI: 0.37-3.16) or adults (HR 1.00 95% CI: 0.85-1.18), including adults older than age 50 years (HR: 0.96 95% CI: 0.80-1.14).

    Mortality rates for celiac patients with persistent villous atrophy are about the same as for celiac patients with healthy guts. So, persistent villous atrophy is not tied to higher mortality for celiac disease patients. That means that even though a follow-up biopsy will help doctors to spot refractory disease in symptomatic patients, persistent villous atrophy is not useful in predicting future mortality.

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    So I interpret this to mean that a little accidental gluten may not be good for you, but it most likely won't cause any damage that will kill you. It apparently didn't trigger any other diseases that would kill you either. I wonder if the "not dead" celiacs with villous atrophy had as good a quality of life as those who had mucosal healing.

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    Interesting! I continue to have villous atrophy in the absence of gluten in my diet (my TTG test is now negative). Not all guts heal completely, especially those guts where the celiac disease took decades to diagnose. Nice to know that my imperfect villi may not take me out of this life early after all!

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    It may not affect the length of life to have some villous atrophy, however I'm wondering about quality of life.

    I believe that a little "accidental gluten" is a slippery slope. Is 20ppm not outside the amount that's accidental? How much is too much accidental?

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    So this means I am not going to die if I eat some gluten... therefore like most things in life, by exposing myself to a small amount of something that in large amounts would hurt me, I create some level of immunity to the ill effects. I was diagnosed aged 6 months old, now 47, I do not follow the diet strictly and I believe I have a much better quality of life. However, having interesting discussions with people more recently diagnosed who believe that absolute abstinence is the right way... they may be right but I have yet to see any medical evidence... thoughts?

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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