Should There Be Mass Screening for Celiac Disease?

Because Celiac Disease is so widespread throughout the world, the suggestion has been made that everyone be tested for the disease.  The European Union sponsored a research project at Umea University in Norway dealing with this question.

  The researchers chose to focus only on adolescents.  The results of the study were thought provoking.  It rasied several issues such as the consequences of being diagnosed to an individual who has no symptoms. Also, is adolescence a good time to screen or should the testing be done earlier in life?  What information about Celiac should be made available to those who are being tested? Before implementing mass screening for Celiac disease, there is a need to ensure that the potential benefits outweigh the harm. 

The reason that most of the adolescents chose to participate in this study had to do with a willingness to contribute to research but not necessarily wanting to learn about personal susceptability. For the majority of those who tested positive, the news of the diagnosis was like a lightning bolt had hit.  Neither parents nor their adolescents expected  the test to be positive. There was a perception by parents that "healthy child" had been taken away from them.  In some who were symptomatic, the positve diagnosis and  the gluten-free diet provided a means of feeling better. There was now an explanation for symptoms and a means to deal with them. In many cases, the participants and parents did not have sufficient understanding about the disease and became anxious about the outcome.  The most common concerns were about future complications such as cancer or diabetes.  Some participants were ambivalent about the the benefits to them of a gluten-free diet. As they were not symptomatic, they would not notice any health improvement while the diet would have implications for social interactions. 

The overall conclusion from the study was that 92% of the parents felt testing was beneficial.  The majority of the parents felt the testing should take place earlier in life when it would be easier to shape eating behaviors.  Many parents of asymptomatic teens felt the test and the diagnosis prevented future symptoms and complications. 

It is apparent that the inforrmation provided when subjects are being screened, needs to be balanced to prevent unecessary anxiety since a majority of those screened will test negative. There also needs to be adequate provisions for follow-up education and support for those who are diagnosed. These are important considerations before instituting mass screenings.