According to a recent analysis, children who have a first-degree relative with celiac disease may be at higher risk of developing the disease before age 10 than previously thought. To better identify factors that increase the risk of celiac disease development, a web-based prediction model was developed to help screen for celiac disease in children.  

Screening for celiac disease is recommended in children who have a first-degree relative with celiac disease, but it’s unclear when to screen these children and how frequently. A team of researchers, led by Caroline Meijer, MD, at Leiden University Medical Center in the Netherlands, developed a prediction model to help provide individual screening recommendations based on age, gender, HLA-DQ genes, and how many first-degree relatives have celiac disease.  

The researchers analyzed 10 years of follow-up data from the PreventCD birth cohort, with 944 children genetically predisposed to celiac disease with at least one first-degree relative affected. They found that celiac disease risk differs by gender, age, and HLA-DQ genes. Variables that significantly affected the risk were combined to develop a risk score.  

Until recently, the risk of developing celiac disease in a child with an affected first-degree relative was considered to be 5-10%. However, in this study, researchers found that the probability of a child with an affected first-degree relative developing celiac disease was 7.5% at age three, 16.6% at age eight, and 17.5% at age 10. Celiac disease was also found to develop more frequently in girls, and in homozygous HLA-DQ2 children (children with two copies of HLA-DQ2).   

Benjamin Lebwohl, MD, MS, Director of Clinical Research at the Celiac Disease Center at Columbia University Medical Center, New York, and Celiac Disease Foundation Research Grant Awardee, said the study provides data that can help parents of a child with a family history of celiac disease. “The results of the study include an estimate of celiac disease risk over time, based on the child’s age, number of affected relatives, and genetic test results. Using this information, the web-based prediction model provides advice on how often to test the child for celiac disease, based on the child’s risk of developing the condition in the years ahead.”  

Access the prediction model here. The study authors’ disclaimer states: “This prediction model is a user-friendly tool for calculating the cumulative probability of acquiring celiac disease for children in high-risk families (at least one first-degree relative with proven celiac disease). Although it has been developed with care, it does not come with any guarantees.” While it’s critical to consult your physician if you think your child may be at risk for celiac disease, this tool is still important and useful in providing recommendations to caregivers for the screening of celiac disease in children who have an affected first-degree relative.  

Would you like to participate in celiac disease research? Join the thousands of others in the iCureCeliac® patient registry who are providing critical insights into life with celiac disease. Your participation will help create better diagnostic tools and treatments, governmental policy changes, and access to new and innovative clinical trials nationwide, which may, one day, cure celiac disease. Join iCureCeliac® here.