OBJECTIVES: Awareness of the prevalence and burden of celiac disease is increasing globally. This study summarizes the latest estimations of celiac disease prevalence and burden disease, including impact on quality of life, of celiac disease in the US and around the world, comparing methods used and reliability of data.

METHODS: Meta-review of literature and comparison of methods and estimations from peer-reviewed studies in 68 countries.

RESULTS: The reliability of estimations of prevalence and burden of celiac disease vary greatly in the US and around the world, with the exception of Northern Europe. Variability in estimations are due in part to failure of primary healthcare providers to suspect, screen for and accurately diagnose celiac disease, and multiple misdiagnoses due to diverse symptomatology of the disease. Confounders of accurate estimation of prevalence and burden of disease include lack of access to diagnostics and genetic biomarkers, avoidance of consumers, providers and governments to perform confirmatory biopsies, self-diagnosis by consumers, and gluten free diet.

CONCLUSIONS: Celiac disease continues to be poorly understood, underdiagnosed and mismanaged in most countries of the world, resulting in significant burden of disease and impact on quality of life. Advances in less invasive diagnostics and better electronic health data analytics, along with increased education of primary care practitioners and new therapeutic choices should improve diagnosis and lessen overall burden of disease.