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  • Scott Adams

    Can a More Personally Tailored Follow-up Improve Celiac Disease Treatment?

    Scott Adams
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    Reviewed and edited by a celiac disease expert.

      Most celiac disease patients diagnosed as children do not receive recommended follow-up checks as adults. 

    Research fellows. Image: CC BY 2.0--NWABR
    Caption: Research fellows. Image: CC BY 2.0--NWABR

    Celiac.com 07/02/2020 - Lack of long-term follow-up after pediatric-adult transition in celiac disease is not associated with complications, ongoing symptoms or dietary adherence, but researchers are calling for more personally tailored follow-ups that can help celiacs who don't follow a gluten-free diet.

    People with celiac disease need to follow a life-long gluten-free diet. To make sure that celiac treatment is successful, and that celiacs are properly following a gluten-free diet, doctors recommend regular follow-up for celiac patients. 

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    A team of researchers recently set out to evaluate the implementation and significance of long-term follow-up. The research team included Laura Kivelä, Sointu Hekkala, Heini Huhtala, Katri Kaukinen, and Kalle Kurppa.

    The team collected medical data from 585 patients, and sent follow-up questionnaires to 559 current adult celiac disease patients, who were diagnosed as children. 

    The team then compared the diagnostic factors and health outcomes between those adults who got follow-up and those who did not. The data showed that 92% of pediatric celiac patients received follow up 6–24 months after diagnosis. 

    A total of 235 adults responded to the questionnaires a median of 18 years after diagnosis, only one in four reported regular celiac follow-ups. Among patients with similar features at diagnosis, those reporting regular follow-ups were diagnosed more recently than those reporting no follow-up. Those reporting follow-ups were less likely to smoke, or to be related to celiac patients, and more likely to be students and/or to have type 1 diabetes. 

    Patients who did not receive regular follow-ups did not have more complications, ongoing symptoms, poorer general health or dietary adherence. Most celiac disease patients diagnosed as children do not receive recommended follow-up checks as adults. 

    Lack of follow-up was not tied to poorer long-term treatment outcomes in general, but no patients avoiding a gluten-free diet were receiving follow-up checks, so we don't have data on this group. Based on these results, the study team recommends a more personally tailored follow-up of celiac disease treatment.

    Do you receive regular medial follow-up checks for your celiac disease? Do you feel that your follow-up treatment is adequate? Share your comments below.

    Read more at United European Gastroenterol J. 2020 Mar; 8(2): 157–166


    The researchers are variously affiliated with the University Consortium of Seinäjoki, Seinäjoki, Finland; Tampere Center for Child Health Research, Tampere University and Department of Paediatrics, Tampere University Hospital, Tampere, Finland; the Department of Internal Medicine at Tampere University Hospital in Tampere, Finland; the University of Helsinki and Helsinki University Hospital, Children's Hospital, and Pediatric Research Center, Helsinki, Finland; and the Faculty of Medicine and Health Technology, the Faculty of Social Sciences, and the Celiac Disease Research Center at Tampere University in Tampere, Finland.

    Edited by Scott Adams

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    I receive follow up biopsies about every two years. My doctor has to do an upper GI exam for other gastric issues and does the biopsy at that time. For some reason they do not do the blood testing here in Florida. 

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    It appears less than half of the ADULT patients responded to the questionnaire so I think that might cast some doubt on any conclusions to be drawn 

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    45 minutes ago, Scott Adams said:

    I've NEVER had follow up care of any kind unless I more or less demanded it. I have what is considered a very good Kaiser health care plan.

    Not my experience at all with Kaiser.  Both my GI or PCP doctors order tests in advance of my annual check up (antibody testing, bone scans (every two years, but I had fractures), thyroid panel, vitamin deficiencies, etc.)  Maybe you should come down to LA or get another doctor within your clinic.  😉

    Kaiser did not diagnose me.  My diagnosing GI never followed up with me.  I had to educate my former PCP about follow-up care which he accepted based on the accepted recommendations of leading celiac disease research centers that I presented to him.   

    Edited by cyclinglady

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  • About Me

    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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