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  • Jefferson Adams

    Long-Term Mortality in People With Celiac Disease Diagnosed in Childhood Compared With Adulthood: A Population-Based Cohort Study

    Jefferson Adams
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    Reviewed and edited by a celiac disease expert.

    Photo: CC - jimmedia
    Caption: Photo: CC - jimmedia

    Celiac.com 04/04/2012 - After numerous studies over several decades showing higher mortality rates in people with celiac disease, including a comprehensive study in 2009, published in Gastroenterology, news of a recent UK study, finding mortality rates for people with untreated celiac disease that are similar to the general population, has raised a few eyebrows.

    Photo: CC - jimmediaWith diverse study data fueling differing opinions, questions regarding long-term mortality in people with celiac disease will likely take time to resolve.



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    In the meantime, a review of scientific literature brought up this small 2007 study. In it, a research team compared long-term mortality rates in people diagnosed with celiac disease as children with rates for those diagnosed as adults. They wanted to find out how those rates might differ and if the rates might be related to the disease and the length of gluten exposure before diagnosis.

    To find an answer, the team gathered data for 285 children and 340 adults diagnosed with celiac disease. They continued to gather data for each until the end of 2004, excepting those who failed to follow up for other reasons.

    From their data, the team calculated standardized mortality ratios (SMRs) for the period starting five years after patient diagnosis. They found that adults diagnosed with celiac disease had 38% higher mortality rates (SMR 1.38, 95% CI 1.16-1.63). Children on the other hand, faced rates three-times higher (SMR 3.32, 95% CI 2.05-5.07).

    This excess mortality in children was mainly due to higher rates of death from accidents, suicide, and violence (seven deaths, SMR 3.22, 95% CI 1.29-6.63), cancer (five deaths, SMR 3.72, 95% CI 1.21-8.67), and cerebrovascular disease (two deaths, SMR 10.03, 95% CI 1.21-36.00).

    The 2007 study found that adults with celiac disease face a modest increase in mortality rates over the long-term, but that mortality rates for those diagnosed with celiac disease as children were three-times higher starting five years after diagnosis.

    The team proposed that the increased mortality in children from external causes may be due to behavioral changes associated with living with life-long celiac disease and its treatment.

    Stay tuned for further developments regarding mortality rates in people with celaic disease.

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    This article really didn't tell us anything at all, and the statistics aren't explained well. The lousy content is more the fault of the authors of the study, not the article, however.

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    Mental and physical health are dramatically affected by gluten...however... I did not begin to heal until I went not only gluten free but also LOW FODMAP.

     

    I think these docs are missing the boat here... I can't even get one to give me a fructose intolerance test..say they can't find the "codes" for billing to order it... I gave up on confirmation of fructose intolerance... I went to lactose free milk...no longer eat onions, garlic, cabbage family veggies, cut out some types of beans...these things and other high fodmap fruits and veggies...like apples, pears, berries, watermelon, cantelope, oranges. Things I thought were good for me were making me feel suicidal and causing much insomnia, IBS, and pain...

     

    Now that I stick to my low fodmap plan..I feel healthy again for the first time in 15 years, but...now....when I screw up (and inadvertently, that happens a lot)... the pins and needles, arms and legs going numb, even my head goes numb at times, will start within minutes now of eating the offending foods, and depression thoughts will last for two days, with fatigue.

     

    I was so sick prior to this, and I had these symptoms constantly, so I never associated the symptoms with foods. I just thought I was dying, and being diagnosed with fibromyalgia, chronic fatigue, nueralgia, IBS... chronic LYME disease... I could go on here, but the point is... none of my 28 docs, surgeons, specialists EVER said A WORD about food being the cause....even when I would tell them... things like... " Every time I eat a bowl of raisin bran, on those days...my vision gets so blurry and double I cannot see for rest of the day" .... or "When I drink orange juice, I start to heat up and sweat".... they brushed it off...as some SYNDROME SYMPTOM, or menopause...and wanted to give me more drugs...every time!

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    The article states that they calculated ratios five years after diagnosis but they don't specify if the patients were on a strict gluten-free diet or if there levels were tested to suggest adherence to the diet. The article leaves you confused and it could be that the study did not list the specifics....either way, wish we had more details.

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    This study seems flawed to me. It is essentially comparing mortality rates of children vs. mortality rates of adults. Celiac is not the main variable. In order for this study to be meaningful the researchers would need many more years of data and to make an apples to apples comparison.

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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 2,500 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. 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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