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  • Jefferson Adams
    Jefferson Adams

    Should We Have Mass Screening for Celiac Disease?

    Reviewed and edited by a celiac disease expert.

    Celiac.com 01/16/2012 - Should there be mass screening for celiac disease? Currently, there is no consensus among scientists or among public policy makers in favor of mass screening for celiac disease as a public health intervention. Advocacy for mass celiac disease screening remains somewhat controversial.

    Photo: Gene Davis -- Smithsonian InstitutionA team of researchers recently conducted a mixed-method study to address the issue of mass screening for celiac disease from the perspective of newly diagnosed patients and their parents.

    The study team included Anna Rosén; Maria Emmelin; Annelie Carlsson; Solveig Hammarroth; Eva Karlsson, and Anneli Ivarsson.

    The team screened data from a total of 145 people with antibody-detected celiac disease. They got the data from a Swedish school-based screening study. They then invited the adolescents with celiac disease and their parents to join this study about one year after diagnosis.

    In all, the team conducted 14 focus group discussions with 31 adolescents and 43 parents. They obtained written narratives from 91 adolescents (63%) and 105 parents (72%), and obtained full questionnaires from 114 parents (79%).

    They then analyzed data using qualitative content analysis. They were able to use narratives and questionnaire data for quantified measures.

    They found that the majority of adolescents and parents described how they agreed to participate "for the good of others," without concern for themselves.

    Many found the invitation "hard to resist," since it introduced the possibility that they might have the disease. The majority who were diagnosed described the experience as "a bolt of lightning," but for many others, diagnosis offered an explanation for previous health problems. Many of those people describe how "suddenly everything made sense," once they were diagnosed.

    Participants largely reported "feeling grateful for being made aware," of their celiac disease, but some adolescents and parents also reported "ambivalent feelings about personal benefits."

    92% of parents supported future screening for celiac disease. The most common opinion among most adolescents and parents agreeing that mass screening should be "a right for everyone" and should be offered as early as possible.

    Though most people diagnosed with celiac disease were surprised, adolescents and parents reported feeling grateful for the diagnosis.

    Most kids with celiac disease and their parents participating in the study said that they welcomed mass screening for celiac disease, but suggested that it should be done earlier in life.

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    I've heard that all Italian school children are screened before starting schools, and that Italy is one of the easiest places to travel on a gluten-free diet. I'm all for it.

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    Something to seriously consider as perhaps this will make McDonald's recognize that multiple issues over a lifetime related to inflammatory issues, infections, autoimmune disorders, bowel issues (sometimes), and even cancers can signal celiac disease. For those diagnosed after decades of inexplicable issues for themselves and family members, it is truly an "ah hah" moment as it has been for me. Locally, in MA there are towns health departments offering screening. Once again, the doctors need to know the proper two key tests and how to interpret these in light of someone with a longstanding unidentified diagnosis and then the alternate new test to do if there Total IgA is suppressed such that the tTG-IgA is falsely negative because of IgA deficiency. Genetic screening is often not even considered by most docs due to the cost, and the new anti-DGP is also considered costly.

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    Should mass screening be done with school age children? I think the question is that children should be screened for celiac disease BEFORE they start school. The disruption that celiac disease causes to physical health is distracting enough. My grandson, age 10, was just diagnosed with celiac disease (by blood work; endoscopy to follow). My daughter who is a celiac had to fight with his pediatrician to test for celiac disease despite the fact that he has been suffering with the common symptoms for the last two years. It was only when the blood work came back positive did this doctor grudgingly agree to further test him. I can't help but wonder that if there had been testing provided by the school district, would have spared him from further damage that he is suffering now and aggravation my daughter went through convincing a doctor that something was wrong.

    Side Note: Celiac disease is rampant in my family. It may have caused the death of my sister (lymphoma) in 1990 from not being diagnosed with celiac disease. I was diagnosed in 2004. My daughter was diagnosed in 2006. My brother may have it but refused to be tested and instead has gone gluten free. He is a lot better. Granted research has chased down genetic factors that can be tested through an initial blood work. When I was growing up, I remember all children having to have all kinds of testing done and getting shots before we could go to school. So why not do the same for celiac disease by requiring that initial blood test with parents permission of course. That would be my one wish down the road. During these times when school districts are laying off teachers and closing down schools right and left, that kind of testing would be impossible. But maybe down the road...

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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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