Most children who should be tested for celiac disease are being missed, Beyond Celiac data analysis finds

Beyond Celiac research builds evidence of the need for widespread testing of celiac disease

By Amy Ratner, director of scientific affairs

An adolescent boy’s parent described him as becoming a new kid when his mood swings and ADHD symptoms disappeared after his celiac disease diagnosis.

A young woman said she had nausea and pain after every meal from the time she was a baby until she was diagnosed with celiac disease at 19.

These were among the Beyond Celiac Voices of Celiac Disease campaign examples Deb Silberg, MD, Beyond Celiac chief scientific officer highlighted in a presentation at the recent University of Colorado Celiac Disease Screening Symposium.

Silberg’s Colorado talk was one of two recent conference presentations she has given about screening and testing for celiac disease in children, backed by evidence from an analysis of private payer medical insurance claims.

Testing at-risk children inadequate

Only 10 percent of nearly 224,000 children who had a symptom or condition that should have led to celiac disease testing were actually tested, the analysis found. Professional medical associations guidelines, which call for testing based on 22 conditions, are not being adequately followed, the data analysis showed.

Additionally, the analysis found that when compared to other children, non-Hispanic white children the most likely to be screened while non-Hispanic Black children were the least likely.

The data analysis also found disparities in testing based on age, with children 11- to 20-years-old twice as likely to be tested compared to those 1- to 10-years-old.

Of all children tested, the most common condition was recurrent abdominal pain at about 63 percent. However, only about 14 percent of children presenting with recurrent abdominal pain were tested for celiac disease. Again, non-Hispanic white children were nearly twice as likely to be tested compared to non-Hispanic Black children.

The insurance claims database included about 77 million patients from 2007 to 2022. The analysis was done on a representative sample that included about 1.3 million children.

“Mass screening for celiac disease could reduce the effects of physician bias, inadequate screening guideline adherence, healthcare access and other factors that lead to significant racial and ethnic disparities in celiac disease screening,” Silberg concluded in her Colorado presentation.

What is screening and why it’s important

A screening test is done to detect potential health disorders or diseases in people who do not have any symptoms of disease, according to Johns Hopkins University. The goal is early detection and lifestyle changes or surveillance, to reduce the risk of disease, or to detect it early enough to treat it most effectively. Screening tests are not considered diagnostic but are used to identify who should have additional testing. In celiac disease, initial positive blood tests are usually followed by an endoscopy and biopsy for diagnosis.

“It is important to understand what factors contribute to screening disparities so that interventions can be pursued that would lead to increased and equitable access to screening,” Silberg concluded when speaking recently at the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN) annual meeting.

Previously, she presented evidence at the American College of Gastroenterology (ACG) annual scientific meeting related to adults with celiac disease based on the data analysis.

It also found that guidelines for testing people for celiac disease based on related symptoms are not being followed by healthcare providers. The findings also showed disparities in celiac disease screening based on age, race, ethnicity and the presenting condition.