Celiac disease prevalence varies according to how it is measured. A global meta-analysis found 1.4% seroprevalence but 0.7% biopsy-confirmed prevalence in studies published from January 1991 through March 2016. Estimates also differ by age, sex, region, family history, and whether a person has received a diagnosis.
Contents
- Global prevalence
- Incidence and time trends
- U.S. prevalence and gluten avoidance
- Risk among first-degree relatives
- Symptoms and clinical presentation
- Associated conditions and intestinal findings
- Mortality in a Swedish cohort
Global prevalence
The distinction between a positive blood test and a confirmed diagnosis is central to celiac disease statistics. In the systematic review and meta-analysis Global Prevalence of Celiac Disease, pooled global seroprevalence was 1.4% (95% confidence interval [CI], 1.1%–1.7%) based on anti-tissue-transglutaminase and/or anti-endomysial antibodies. The pooled prevalence of biopsy-confirmed celiac disease was lower, at 0.7% (95% CI, 0.5%–0.9%). These results combine studies from different countries and periods rather than describing one worldwide survey.
The same review reported the following pooled regional prevalence estimates. Because the figures are pooled estimates from studies published between January 1991 and March 2016, they should not be read as current national prevalence rates.
| Region | Pooled prevalence |
|---|---|
| South America | 0.4% |
| Africa | 0.5% |
| North America | 0.5% |
| Asia | 0.6% |
| Europe and Oceania | 0.8% |
Age and sex were also associated with different pooled estimates. Prevalence was 0.6% among females and 0.4% among males. It was 0.9% among children compared with 0.5% among adults. These comparisons describe pooled study results; they do not mean that every country or age group has the same pattern. Source: Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis (studies published January 1991–March 2016).
Incidence and time trends
Prevalence describes how many people have a condition at a given point or period, while incidence measures newly identified cases over time. In the systematic review Incidence of Celiac Disease Is Increasing Over Time, 21st-century population-based studies reported pooled female incidence of 17.4 per 100,000 person-years (95% CI, 13.7–21.1). Pooled male incidence was 7.8 per 100,000 person-years (95% CI, 6.3–9.2).
The pooled child-specific incidence was 21.3 per 100,000 person-years (95% CI, 15.9–26.7), compared with 12.9 per 100,000 person-years among adults (95% CI, 7.6–18.2). Person-years account for both the number of people observed and the length of observation, so these rates are not percentages of the population.
Trend analyses covering the latter 20th and early 21st centuries found that celiac disease incidence increased by an average of 7.5% per year (95% CI, 5.8%–9.3%) over the several-decade period studied. A rising recorded incidence can reflect changes in disease occurrence, testing, awareness, diagnostic practice, or a combination of these factors. Source: Incidence of Celiac Disease Is Increasing Over Time: A Systematic Review and Meta-analysis (21st-century studies and trend analyses covering the latter 20th and early 21st centuries).
U.S. prevalence and gluten avoidance
National Health and Nutrition Examination Survey (NHANES) estimates provide a U.S. view for the civilian, non-institutionalized population aged 6 years and older. The survey-weighted celiac disease prevalence was 0.7% (95% CI, 0.6%–0.8%) in 2009–2010, 0.8% (95% CI, 0.4%–1.2%) in 2011–2012, and 0.7% (95% CI, 0.3%–1.0%) in 2013–2014.
Within the same 2009–2014 NHANES analysis, the prevalence of undiagnosed celiac disease fell from 0.6% in 2009–2010 to 0.3% in 2013–2014. The figures refer to the survey’s definition and testing approach; they are not a count of every undiagnosed person in the United States.
Gluten avoidance without celiac disease moved in the opposite direction across the reported survey cycles. The prevalence of people without celiac disease who avoided gluten was 0.5% in 2009–2010, 1.0% in 2011–2012, and 1.7% in 2013–2014. The 2013–2014 estimate corresponded to 3.1 million U.S. people. “People without celiac disease who avoided gluten” is a study-defined category, not a medical diagnosis.
| NHANES cycle | Celiac disease | Undiagnosed celiac disease | Avoided gluten without celiac disease |
|---|---|---|---|
| 2009–2010 | 0.7% | 0.6% | 0.5% |
| 2011–2012 | 0.8% | Not reported in the supplied estimate | 1.0% |
| 2013–2014 | 0.7% | 0.3% | 1.7% |
Source: Less hidden celiac disease but increased gluten avoidance without a diagnosis in the USA (NHANES 2009–2014).
Risk among first-degree relatives
Family history is associated with a substantially higher prevalence among first-degree relatives of people with celiac disease. A systematic review and meta-analysis using studies available through January 11, 2024 found pooled seroprevalence of 11% (95% CI, 9%–13%) in first-degree relatives. Pooled biopsy-confirmed prevalence was 7% (95% CI, 6%–9%). As in global estimates, the blood-test and biopsy measures are different outcomes and should not be treated as interchangeable.
The reported prevalence varied by relationship and sex. It was 23% among daughters of affected patients, 14% among sisters, 6% among sons, and 9% among brothers. Among first-degree relatives who had celiac disease, 34% were asymptomatic, while pallor was reported in 54%. The symptom result underscores why the absence of noticeable digestive symptoms does not describe whether a relative has the condition.
Source: Global Prevalence and Clinical Manifestations of Celiac Disease Among First-Degree Relatives: A Systematic Review and Meta-Analysis (studies available through January 11, 2024).
Symptoms and clinical presentation
The symptom percentages below come from an Italian referral-center cohort covering 1998–2012. They describe that clinical setting and should not be treated as population prevalence. In the cohort, 79% of celiac disease cases had a symptomatic onset. Among symptomatic cases, 66% had a non-classical phenotype and 34% had a classical phenotype.
Digestive and related presentations included diarrhea in 27% of the cohort, bloating in 20%, aphthous stomatitis in 18%, alternating bowel habit in 15%, constipation in 13%, and gastroesophageal reflux disease in 12%. The distribution shows that a diagnosed cohort can include several bowel patterns, rather than diarrhea alone.
The same Italian cohort reported osteopenia or osteoporosis in 52% and anemia in 34%. Those findings are observations from patients treated or evaluated at a referral center, not estimates of how common each feature is among all people with celiac disease.
Source: The changing clinical profile of celiac disease: a 15-year experience (1998–2012) in an Italian referral center (1998–2012).
Associated conditions and intestinal findings
The Italian referral-center cohort also reported several associated conditions. Cryptogenic hypertransaminasemia occurred in 29% of patients, autoimmune thyroiditis in 26.3%, recurrent miscarriages in 12%, IgE-mediated allergy in 9%, dermatitis herpetiformis in 4%, and type 1 diabetes in 3%.
Laboratory and biopsy findings were also reported. IgA tissue-transglutaminase antibodies were positive in 97% of the cohort. Villous atrophy was found in 87%, while minor intestinal lesions consistent with potential celiac disease were found in 13%. These percentages describe the cohort’s clinical and histologic findings and do not establish that celiac disease caused every associated condition.
The difference between these results and population estimates matters. A referral center may see patients with more complex, persistent, or difficult-to-diagnose presentations than a general population sample. The study’s percentages are therefore useful for describing the range of findings in that cohort, but they should not be generalized as nationwide rates.
Mortality in a Swedish cohort
A Swedish population-based study examined people with histopathology-defined celiac disease diagnosed from 1969 through 2017 and followed participants through December 31, 2017. The study matched patients to controls and reported observational associations, not proof that celiac disease caused each outcome.
Overall mortality was 9.7 deaths per 1,000 person-years among people with celiac disease versus 8.6 among matched controls (hazard ratio [HR] 1.21; 95% CI, 1.17–1.25). During a median 12.5-year follow-up, 13.2% of people with celiac disease died. For people diagnosed at ages 18–39 years, mortality was 1.9 versus 1.1 deaths per 1,000 person-years in the celiac disease and control groups (HR 1.69; 95% CI, 1.47–1.94).
Cause-specific mortality estimates were 3.5 versus 3.4 deaths per 1,000 person-years for cardiovascular disease (HR 1.08; 95% CI, 1.02–1.13), 2.7 versus 2.2 for cancer (HR 1.29; 95% CI, 1.22–1.36), and 0.6 versus 0.5 for respiratory disease (HR 1.21; 95% CI, 1.08–1.37). These are cohort comparisons, not individual predictions.
The difference was largest during the first year after diagnosis: 15.3 versus 6.5 deaths per 1,000 person-years (HR 2.34; 95% CI, 2.14–2.55). More than 10 years after diagnosis, mortality was 10.5 versus 10.1 deaths per 1,000 person-years (HR 1.15; 95% CI, 1.10–1.20). Among Swedish patients diagnosed during 2010–2017, mortality was 7.5 versus 5.5 deaths per 1,000 person-years (HR 1.35; 95% CI, 1.21–1.51).
Source: Association Between Celiac Disease and Mortality Risk in a Swedish Population (diagnoses 1969–2017; follow-up through December 31, 2017).