It has long been estimated that 1 in 133 Americans, or about 1% of the population, has celiac disease. Though key opinion leaders have not agreed on a revision of that estimate, recent screening studies raise the question of whether prevalence is higher than 1% in the United States. Additionally, screening studies in countries like Italy, Finland, and Norway have found even higher estimated rates of celiac disease.
Prevalence refers to the proportion of people with a disease during a certain time period, while incidence refers to those who may develop the disease during a time period. Think of prevalence as anyone who may have celiac disease in a year, and the incidence being the number who are newly diagnosed in a year.
Pediatric screening studies in particular are beginning to find much higher rates of celiac disease, some around 2%. However, a 2022 study found that the incidence of celiac disease in children varied by region, which suggests potential environmental, genetic, and epigenetic influences even within the United States.
In 2003, celiac disease expert Alessio Fasano, MD, director of the Center for Celiac Research and Treatment at Massachusetts General Hospital, published a prevalence study looking into celiac disease in at-risk and general American populations. Prior to this groundbreaking study, celiac disease was believed to be a rare disease in the United States.
The study found that the prevalence of celiac disease in the US was 1 in 22 in first-degree relatives, 1 in 39 in second-degree relatives, and 1 in 56 in symptomatic patients. The prevalence of celiac disease in this study in not-at-risk groups was 1 in 133 or about 1%.
In statistical analyses, race was not included as a factor due to the low number of nonwhites in the study. The authors list the low amount of racial and ethnic diversity as a potential limitation of the research, but did state that, “our data suggest the prevalence of CD in these groups may be similar to that of whites.” Read the full prevalence study.
Research being conducted by Beyond Celiac and the National Minority Quality Forum suggests that someone’s race and ethnicity and what part of the United States they live in can affect whether they are diagnosed with celiac disease. Read more about this research project.
In 2016, findings from National Health and Nutrition Examination Surveys (NHANES) from 2009 to 2014 were published. NHANES is a major annual CDC survey program that attempts to assess the health statuses of Americans. Each year they survey 5,000 people. Analysts concluded that over the 2009-2014 time period the prevalence of celiac disease stayed steady at roughly 0.7-0.8% (or still about 1 in 133), but that more people were diagnosed (perhaps due to increased awareness.) Additionally, they found the number of people in the United States following the gluten-free diet without a diagnosis of celiac disease had significantly increased. Read the study.
In 2003, a study published in the New England Journal of Medicine looking at blood samples from 3,654 children estimated the prevalence of celiac disease in Finnish children to be 1 in 99. Read the study.
In 2020, a pediatric screening study of 10,000 children in Colorado found that of the children screened, 2.4% had an initial positive celiac disease test. Of the 185 children who returned for follow-up, 149 had a positive confirming test. The study concluded that universal screening may be the only way to identify all the children in the United States who have celiac disease. Read more about the study.
In 2021, a mass screening program of children in Italy found the prevalence of celiac disease to be 1.6%. Read more about this study.
In 2009, a case-finding study published in the Scandinavian Journal of Gastroenterology stated, “judging by serologic screening studies, the prevalence of coeliac disease is about 1–2% in the adult population [in Finland].” Read the study.
In 2012, a review of blood donations in São Paolo, Brazil, found celiac disease antibodies in at least 1 in 286 “supposedly healthy” blood donors. Read the study.
A 2015 study found an estimated 0.9% celiac disease prevalence in Germany. Read the study.
A 2016 meta-analysis found the pooled positive celiac disease blood test prevalence in 47,873 individuals in Asia was 1.6%. Read the study.
A 2016 study found that celiac disease was more prevalent in Northern India than in Southern India. “The prevalence correlated with wheat intake and did not reflect differences in the genetic background.” Read the study.
A 2018 systematic review of the global prevalence of celiac disease is “1.4% in 275,818 individuals, based on positive results from tests for anti–tissue transglutaminase and/or anti-endomysial antibodies (called seroprevalence).” However, they found that, “the prevalence of celiac disease based on biopsy results is 0.7%. The prevalence of celiac disease varies with sex, age, and location.” Additionally, “the prevalence of celiac disease was significantly greater in children than adults.” Read the study.
A 2021 meta-analysis of the prevalence of celiac disease in China found an overall 0.27% prevalence of positive blood tests. However, they found the prevalence in high-risk Chinese individuals was over 4%. Participants were considered high risk if they had T1D, rheumatoid arthritis, psoriasis, IBS, IBD, anemia, chronic diarrhea, short stature, or other conditions/symptoms related to celiac disease. Read the study.
In 2022, a widespread screening study estimated that nearly 1.5% of the residents of one Norwegian county have celiac disease, and before the screening, 75% didn’t realize it. Read more about the study.
More research is needed to understand the true prevalence of celiac disease around the globe. However, with multiple screening studies finding higher rates in children, as this population ages and if the trend continues, prevalence rates may adjust upward in the future.