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    Jefferson Adams
    Jefferson Adams

    By Jefferson Adams •

    How Does Delaying Diagnosis Impact People with Celiac Disease?

    Reviewed and edited by a celiac disease expert.

    Celiac.com 01/11/2012 - In an effort to understand how delayed celiac disease diagnosis became the norm for most patients over the last few decades, a research team conducted a study to assess the issue. Their study also looked at how delayed diagnosis affects health-related quality of life (HRQoL) for those with celiac disease, and considered differences with respect to sex and age.

    Photo: CC--MPClemensFor the study, the team collaborated with the Swedish Society for Coeliacs to send a questionnaire to 1,560 randomly-chosen members, divided equally by age and sex. A total of 1,031 members (66%) responded. The team first measured HRQoL using the EQ-5D descriptive system, then translated the results to quality-adjusted life year (QALY) scores.

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    The team then compared the results against the results from a survey of the general population. There was some good news and some bad news.

    The good news is that, while the average QALY score during the year before treatment was 0.66, it improved after diagnosis and treatment to 0.86, which is  better than that the score of 0.79 for the general population.

    The bad news is that they found the average person with celiac disease faced a delay in diagnosis of 9.7 years from the first symptoms, and 5.8 years from the first doctor visit.

    The team concede that the delay has been reduced over time for some age groups, but contend that it still remains unacceptably long for large numbers of people.

    Untreated celiac disease results in poor HRQoL, which improves or exceeds that of  the general population if diagnosed and treated. Reducing the delay in diagnosing celiac disease will go a long way toward reducing the burden of celiac disease.

    To do so, they say it is necessary to raise awareness of celiac disease as a common health problem, and to intensify diagnosis practices. This may, the note, make mass-screening for celiac disease an desirable option in the future.

    Authors: Fredrik Norstrom, Lars Lindholm, Olof Sandstrom, Katrina Nordyke, Anneli Ivarsson

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    Guest Ginger

    Guest Ginger

    Posted

    It took me 11 years to get the celiac diagnosis from the first mental symptoms. I was out of work for most of that time because of the mental symptoms and lost an income of about $800k.

    I am currently experiencing brain fog, poor memory, retention, poor word retrieval which started in my late 40s. I wasn't diagnosed with celiac until 58 years. I have advanced celiac. Had to step back from a highly paid administrative position 5 years ago. My retirement is half of what it was supposed to be if I could have worked for 3 more years. This sucks.

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  • About Me

    Jefferson Adams

    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. His articles, essays, poems, stories and book reviews have appeared in numerous magazines, journals, and websites, including North American Project, Antioch Review, Caliban, Mississippi Review, Slate, and more. He is the author of more than 2,500 articles on celiac disease. His university coursework includes studies in science, scientific methodology, biology, anatomy, physiology, medicine, logic, and advanced research. He previously devised health and medical content for Colgate, Dove, Pfizer, Sharecare, Walgreens, and more. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of numerous books, including "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

    >VIEW ALL ARTICLES BY JEFFERSON ADAMS

     

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