Celiac Disease Facts and Statistics: What You Need to Know

About 1 in 133 people in the United States have celiac disease. That is 1% of the total population, or 2 million people. However, over 80% of people with celiac disease are undiagnosed or misdiagnosed, particularly those who are socioeconomically deprived. The number of people with celiac disease is increasing and varies by location and demographic group.

In this article, learn important statistics and facts about celiac disease.

Celiac Disease Overview

Celiac disease is an autoimmune disease triggered by eating foods with gluten, a protein found in wheat, barley, and rye. When a person with celiac disease ingests gluten, it attacks the small intestine, leading to digestive problems.

Eating a strictly gluten-free diet is important for anyone with celiac disease. Consuming trace amounts of gluten can induce symptoms from headaches to diarrhea and longer-term impacts such as malnutrition, osteoporosis, infertility, and cancer.

Related: Symptoms of Celiac Disease

How Common Is Celiac Disease?

Celiac disease affects about 1.4% of the global population, but only 0.7% are diagnosed, indicating that approximately half of the people with celiac disease worldwide are undiagnosed. An estimated 2 million (or 1 in 133) people in the United States have celiac disease.

This number may be higher in certain geographic regions and specific demographic groups. A recent study screened celiac disease prevalence among children in Colorado. Of these children, 2.4% screened positive for celiac disease, much higher than the general 1% statistic.

Celiac disease is more common among women, children, non-Hispanic Whites, and those who live at higher latitudes.

The incidence of celiac disease has also significantly increased among Western populations in the late 20th and early 21st centuries. Research shows it is growing at a rate of 7.5% each year due to an actual increase in the number of people with celiac disease, not just increased identification and diagnosis.

Celiac Disease by Ethnicity

Celiac disease affects people of all ethnicities. One large-scale U.S. study found that celiac disease affects:

• 1.08% of non-Hispanic Whites
• 0.23% of Hispanic people from Mexico
• 0.22% of non-Hispanic Black people
• 0.38% of "other Hispanic" people
• 0.15% of non-Hispanic Asian and multiracial people

According to this research, celiac disease is 4 to 8 times more common among non-Hispanic whites than among other races.

There is limited research on celiac disease among Black people; however, emerging evidence suggests that it could be significantly underdiagnosed in this population.

A 2022 registry of University of Alabama at Birmingham celiac disease patients found that 80% of Black patients with biopsy-confirmed celiac disease had a normal TTG test (blood test to screen for celiac disease), compared to only 9% of non-Hispanic White people.

This evidence suggests that the first-line screening tests for celiac disease may not be as sensitive as previously thought, particularly across ethnic groups.

Celiac Disease by Age and Sex

Celiac disease is more common in women and children. One recent study examined celiac disease incidence in person-years (the number of people diagnosed during one year). It found that celiac disease was diagnosed in 17.4 per 100,000 women vs. 7.8 per 100,000 men. Incidence among children was 21.3 per 100,000 children vs. 12.9 per 100,000 adults.

It is unclear why more women are diagnosed with celiac disease than men. Some researchers theorize that women are more likely than men to seek medical help. Men and women also tend to have different celiac disease symptom profiles.

Related: Is Celiac Disease More Common in Women?

Causes of Celiac Disease and Risk Factors

Celiac disease is hereditary; you must inherit specific genes to develop it. These genes include:

• HLA-DQ2 (about 95% of people with celiac disease are carriers)
• HLA-DQ8 (about 5% of people with celiac disease are carriers)

However, not everyone with "celiac genes" will get celiac disease. About 30%–40% of the general population has these genes, but only 1% has celiac disease. People with the genes are at a higher risk of developing celiac disease (3%) than the general population, but other risk factors are at play.

Scientists believe that certain environmental factors trigger celiac disease among those people who are genetically predisposed. Some of these risk factors include:

• Assigned female at birth
• Gluten exposure
• Having another autoimmune disease
• Living at a higher latitude
  
• Persistent organic pollutants
• Viruses
  

Related: Celiac Disease: Causes and Risk Factors

Screening and Early Detection

Screening and early detection are becoming more critical due to the number of people with undiagnosed celiac disease and the increase in disease incidence.

Screening for celiac disease includes simple blood tests. You should maintain a gluten-containing diet during the blood test, or the results will be inaccurate. Your healthcare provider may refer you for an endoscopy to confirm the diagnosis depending on the blood test results.

Most people are only screened for celiac disease if they have the typical symptoms. However, this tactic could explain why so many people remain undiagnosed.

In one study, 9,973 children were screened for celiac disease, and 242 screened positive. Of these positive children, approximately 70% reported no symptoms of celiac disease, and 90% had no family history.

According to the researchers, most children with celiac disease will remain undiagnosed if only symptomatic patients are screened. They propose a mass screening program in the United States, but it has not been adopted nationwide.

Related: How Celiac Disease is Diagnosed

Summary

Celiac disease is an autoimmune condition affecting people worldwide. Geography location, sex, and ethnicity affect the likelihood of someone having celiac disease. Additionally, the majority of people with celiac disease are undiagnosed. There is still much to learn about celiac disease statistics, and it is an ongoing area of research in the United States and worldwide.