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  • Jefferson Adams
    Jefferson Adams

    Many Celiac Patients Diagnosed in Childhood Do Not Seek Follow-up care as Adults

    Reviewed and edited by a celiac disease expert.

    Celiac.com 07/08/2016 - If their symptoms don't get worse, many patients diagnosed with celiac disease as children do not pursue follow-up care as adults, according to data presented at Digestive Disease Week 2016.

    There's been some really good stuff coming out of Digestive Disease Week 2016 in San Diego. One example is a talk given by Norelle Reilly, MD, from the division of pediatric gastroenterology and the Celiac Disease Center at Columbia University Medical Center in New York City.

    According to data presented by Dr. Reilly many patients diagnosed with celiac disease as children do not pursue follow-up gastroenterology care as adults, unless symptoms worsen.

    Reilly and colleagues sent a 33-question survey to nearly 8,000 recipients via the medical center's proprietary distribution list and received 98 qualified responses.

    According to Reilly, 37% of respondents said they were not seeking ongoing care for celiac disease. These respondents reported an average of 2 to 5 years, and sometimes as many as 10 years, between doctor visits for their celiac disease. Compare that with an average of six months between doctor visits for people who were getting regular care.

    Large numbers of patients diagnosed with celiac disease in childhood do not seek follow-up care as adults, especially those diagnosed earlier in childhood, who may have fewer ongoing symptoms, Reilly said.Â

    She ended her talk by asking "providers caring for children and adolescents with celiac disease [to] educate early as to the importance of ongoing care, emphasize the importance of follow-up and the reasons for follow-up, particularly with patients who lack symptoms and may not seek care otherwise and to provide a referral, and formally transition the patient to adult care to improve compliance."

    Reference: Reilly N, et al. Abstract #35. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego.

    Read more at Helio.com.


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    Dr. Riley sent out 8,000 surveys and got 98 back. So 7,902 did not respond. Sorry, the methodology was flawed. We have no idea why the nearly 80 times as many respondents chose not to respond. If the survey was perceived as irrelevant to just 1-2% of these (over 100), any conclusion based on just 98 responses is noise.

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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 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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