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  • Jefferson Adams

    Children with Celiac Disease Not Getting Proper Follow-Up Care

    Jefferson Adams
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    Reviewed and edited by a celiac disease expert.

      The latest report on on childhood celiac disease shows that too many kids do not receive proper follow-up care .


    Image: CC--Leonid Mamchenkov
    Caption: Image: CC--Leonid Mamchenkov

    Celiac.com 01/17/2019 - Kids with celiac disease, especially those who are recently diagnosed, are not getting proper follow-up care, according to the latest report. A team of researchers recently set out to assess the follow-up care of children with biopsy-confirmed celiac disease over a minimum of three years following diagnosis. Their results appear in Clinical Gastroenterology and Hepatology. The research team included Bradley A. Blansky MS, Zackary J. Hintze BA, Eaman Alhassan MD, Alan M. Leichtner MD MCHPE, Dascha C.Weir MD, and Jocelyn A. Silvester MD, PhD.

    They are variously affiliated with the Harvard Celiac Disease Program, Boston, MA; the Boston Children’s Hospital, Harvard Medical School, Boston, MA; Boston University, Boston, MA; the Department of Medicine, West Virginia University, Morgantown, WV; the Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA; the Rady College of Medicine, Faculty of Health Sciences, University of Manitoba, Winnipeg, MB.



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    For their study, the research team used a database to randomly select children with biopsy-confirmed celiac disease at Boston Children's Hospital from January 1, 2010 to December 31, 2014. The team followed about 50 cases per year.

    The researchers reviewed patient medical records for a minimum of 3 years of observation following diagnosis. Any child not receiving a gastrointestinal (GI) visit for 18 months was marked lost to follow-up.

    The 241 eligible subjects averaged about 10 years old at diagnosis, and 63% were female. Nearly all of the children reported symptoms, with 24% complaining of abdominal pain, and 14% of experiencing constipation. Just 2% of the children showed no symptoms at all.

    On the upside, more than 80% of the children saw a dietitian, with just under one-in-three kids attending both a dietitian-led class and an individual consultation. 

    But the records show that 25% of the kids were lost to follow-up within a year of diagnosis, and that nearly 10% received no GI visits at all after their diagnostic biopsy.

    Read more at: Clinical Gastroenterology and Hepatology (PAYWALL)

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    Guest Disheartened by Drs

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    My son was diagnosed at age 6 and both his pediatric gastro and pediatrician sent us on our way. About 6 months after diagnosis, we attended a celiac fundraising event and met several people that suggested we get follow up care. If not for them, we probably would’ve gone longer with no follow up. 

    I found a new pediatric gastro who tested my son and said his inflammation was even higher than when he was diagnosed. This was very alarming. 

    Doctors are very dismissive of celiac disease and are not concerned with the effects it has on children’s health.

    This is very sad for the children with celiac and their parents.

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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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