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  • Scott Adams
    Scott Adams

    New Study Says that People with Celiac Disease May Die Earlier than Non-Celiacs

    Reviewed and edited by a celiac disease expert.

    Their results show that people with celiac face a small, but statistically significant increased risk of death from cardiovascular disease, cancer, and respiratory disease. 

    New Study Says that People with Celiac Disease May Die Earlier than Non-Celiacs - Dusk in a cemetery. Image: CC BY-SA 2.0--MGSpiller
    Caption: Dusk in a cemetery. Image: CC BY-SA 2.0--MGSpiller

    Celiac.com 04/15/2020 - We know that untreated celiac disease carries higher risks of early deaths from numerous related conditions, including lymphomas. We often get asked whether celiac disease causes people to die sooner than people without celiac disease. We don't know how much this risk might be reduced by wider diagnosis rates, less severe clinical disease, and more widespread availability of gluten-free food.

    A team of researchers recently set out to evaluate the association between celiac disease and mortality risk in a population-based cohort in Sweden. Their results link celiac disease with a small, but statistically significant increased risk of death, but don't be too alarmed, just yet.

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    For the study, the research team identified and followed all of the nearly 50,000 people diagnosed with celiac disease in Sweden, starting from the day after biopsy, between 1969 and 2017.  Each individual was matched with up to 5 control subjects in the general population by age, sex, county, and time frame. Researchers defined celiac disease as the presence of small intestinal villus atrophy on histopathology specimens during the years 1969-2017 from Sweden’s 28 pathology departments.

    The primary outcome was all causes of death, and the secondary outcome was death by specific cause. The team then used stratified Cox proportional modeling to compared the results of celiac patients with controls, stratifying by year of diagnosis.

    Their results show that people with celiac face a small, but statistically significant increased risk of death from cardiovascular disease, cancer, and respiratory disease. 

    Basically, the study says that if you take all of the people with celiac disease, add up the ages of the subjects, and calculate the number of deaths per thousand person years, then that group of celiacs will have 9.7 deaths, while the general population will have 8.6 deaths, which is an ~11% higher death rate. 

    They also noted that overall mortality risk was greatest in the first year after diagnosis, but persisted beyond 10 years after diagnosis. However, the results raise more questions than they answer. What about treated celiacs? Do they live longer than untreated celiacs? Is there a difference? Does gut healing and a gluten-free diet make a difference? The study doesn't answer those questions.

    The study doesn't tell us anything about the effects of a gluten-free diet on overall mortality rates for celiacs, which is among the first questions celiacs might have. Was the increase due to celiacs who didn't follow a strict gluten-free diet?

    Certainly, a statistically significant increased mortality risk warrants further study. For people with celiac disease who maintain good gut health with a gluten-free diet, the most relevant question will be whether a gluten-free diet and gut healing mitigate this higher risk in any appreciable way. 

    This study lays the groundwork for further studies on the effects of gut healing and a gluten-free diet based on the slightly higher mortality risk for celiacs.

    Read more at Jamanetwork.com

    Edited by Scott Adams



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    Posterboy

    To All,

    Here is a good link to additional resources for mortality in those (Refractory Celiac's) who do not improve on a gluten free diet....I didn't see it linked..

    They used lower albumin levels' as risk factor for increased mortality...

    When this  happens a Celiac is said to be in "Crisis"....more common in newly diagnosed Celiac's.

    Open Original Shared Link

    See table 1 and Table 2 for a quick scan of the article.

    You will probably have low albumin levels and electrolyte abnormalities...if this is the case for you...

    I had similar symptom's when I was diagnosed...

    I hope this is helpful but it is not medical advise.

    Posterboy,

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    Guest Speaker

    Posted

    Many people eat an unhealthy gluten free diet. The food in magazines, websites, etc are often full of junk. This may explain these statistics. If you eat a healthy gluten free diet I think the results could be very different. This aspect is not mentioned in the article.

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    Guest Didi

    My family are coeliaques - my uncle died aged 93, my father 78 from cancer of the larynx (he'd been a heavy smoker) and their cousin died last year aged 98! She was very strict about eating well and organic!

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    Scott Adams

    This study lumps every celiac into a single group and does not differentiate those who are 100% gluten-free from those who cheat regularly. Hopefully they will do more research comparing different groups who are gluten-free.

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    Guest Victoria

    Posted

    Hi, in the above paragraph someone posted about refractory celiac disease link. I don’t see the link. Would the poster post the link again. I wasn’t diagnosed until late in life. I’ve had 2 enteroscopiies with flow cytmetry. I don’t have lymphoma and my gut is slowly healing. I find this study alarming and upsetting to post as it doesn’t take into account diet and lifestyle. (As someone else commented ). Celiac disease folks have to also deal with the gut brain connection and his study doesn’t help anxiety. I know it’s important  to inform celiac patients of studies but darn it’s alarming to see the header when it leaves out so many factors. Diet , adherence and quality of food is huge. I could go and on but posting  a study like that is alarming. If I was newly diagnosed with celiac disease I would be freaking out. Just my opinion. 

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    Scott Adams

    We just report the latest research, whether the findings are positive or negative. Unfortunately it would not be ethical for us to candy coat the results of this study, which indicates that CD is a serious disease, and it should be taken very seriously.

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    Guest Jewel Arnold

    Posted

    I have Celiac Disease, I was very sick almost died before I was diagnosed 4 years ago. I am near 92 years old. I have a celiac doctor that keeps my checked. I was having blood test every 6 months, following strick Gluten Free diet. Right now I am 100% Gluten Free, so my doctor released me for 1 year if I don't have any flareup. Diet is very important and I have only had 1 time I messed up. So its really up to the person to follow the diet.

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  • About Me

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


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