To offer you the best service possible, Dr. Schär Institute uses cookies. By using our services, you agree to the use of cookies. I agree

Healthcare professional Resource for Gluten Related Disorders.

Dr. Schär Institute

Prevalence of celiac disease

Celiac disease is one of the most common intolerances in the world. Data from screening studies reveals that approximately 1% of the population is affected worldwide.
Celiac disease was long regarded as a rare childhood disease. 20 years ago the prevalence was thought to be between 1:1000 and 1:2000. This data was based on the occurrence of manifest disease and more classical presentation forms of celiac disease. The discovery of the various celiac disease-specific antibodies and population screening studies over recent years have revealed that celiac disease is far more common than previously thought. As commonly found in other autoimmune disorders, celiac disease is more prevalent in women that in men, with up to twice as many women affected [1].

Rising Incidence

A study published by Catassi and colleagues in 2014 [2] revealed that the incidence of celiac disease has increased fivefold in the last 25 years. Europe and the United States, where the diet is traditionally based on foods containing gluten, are among the regions with the highest prevalence. The number of individuals diagnosed with celiac disease in North America has increased over time. In one study in Olmstead County Minnesota the overall age and sex adjusted incidence of celiac disease increased from 11.1% in 2000-2001 to 17.3% in 2008-2010 [6]. A similar increase has been reported in Europe as well. In a  recent study conducted in a pediatric population in Scotland demonstrated a 6.4 fold increase in incidence over the 20 years between 1990-2009 [4]. An increase in disease awareness and improvement in diagnostic techniques may largely help to explain these changes.

The Celiac Iceberg

Although it is understood that the prevalence of celiac disease in North America is approximately 1%, only approximately 10 – 15% % of these cases are actually diagnosed [7]. While there has been an increase in the awareness of celiac disease there remains a low rate of diagnosis.

The changing picture of celiac disease

Celiac disease had traditionally been considered a rare childhood disease. It was also commonly thought that children would out grow their celiac disease. We now know that celiac is a permanent intolerance to gluten. We have also come to realize that celiac disease can present in many ways. We now understand that celiac disease can present at any age and with diverse symptoms. The varied presentation is often referred to as the celiac disease iceberg. Only a small portion of individuals with celiac disease present with the “classic symptoms” of diarrhea, bloating, wasting that were the documented traits of childhood presentation. There is a portion of the celiac population that also presents with atypical symptoms - those that are extra intestinal such as neuropathy, anemia, elevated liver enzymes, dermatitis herpetiformis, attention issues [7]. The larger portion of the celiac disease population remains unseen, or under the water line of the ice berg. These presentation profiles include the individuals with silent or latent celiac disease.
Dr. Schär Institute Epidemiology celiac disease Gluten intolerance Celiac iceberg
Celiac iceberg: Since most cases of celiac disease remain undetected due to non-classic symptoms, experts often refer to the iceberg phenomenon of celiac disease.
  1. Hin H, Bird G, Fisher P et al. Coeliac disease in primary care: case finding study. BMJ 1999;318:164-7
  2. Catassi C, Gatti S, Fasano A. The new epidemiology of celiac disease. J Pediatr Gastroenterol Nutr. 2014 59 Suppl 1:S7-9
  3. Zingone F, West J, Crooks C et al. Socioeconomic variation in the incidence of childhood coeliac disease in the UK. Arch Dis Child 2015; 0:1-8
  4. White LE, Merrick VM, Bannerman E et al. The Rising Incidence of Celiac Disease in Scotland. Pediatrics 2014 132;4:1-8.
  5. West J, Fleming KM, Tata LJ et al. Incidence & prevalence of coeliac disease and dermatitis herpetiformis in the UK over two decades: Population-based study. American Journal of Gastroenterology 2014; 109:757-768
  6. Increasing incidence of celiac disease in a North American population. Ludvigsson JF, Rubio-Tapia A, van Dyke CT, Melton LJ 3rd, Zinsmeister AR, Lahr BD, Murray JA. Am J Gastroenterol. 2013 May;108(5):818-24. doi: 10.1038/ajg.2013.60. Epub 2013 Mar 19.
  7. Fasano, A, Bert,i I., Gerarduzzi, T., Not, T., Colletti, R.B., Drago, S., Elitsur, Y., Green, P.H., Guandalini, S., Hill, I.D., Pietzak, M., Ventura, A., Thorpe, M., Kryszak, D., Fornaroli, F., Wasserman, S.S., Murray, J.A., Horveth, K. (2003). Prevalence of celiac disease in at risk and not-at risk groups in the United States: a large multicenter study. Archives of Internal Medicine; 163(3); 286-292.

Further information on this topic

Professional articles 1

Show all

Studies 4

Show all

A Global Map of Celiac Disease

This article focuses on the varying frequency of celiac disease in “time and space”. The information it contains is not only relevant for statistical purposes but also serves to formulate hypotheses on the factors which contribute to the development of this disease that is so widespread in modern society.

>> Read more... <<<
Catassi, C;

Is gluten the great etiopathogenic agent of disease in the XXI century?


Introduction: Gluten is a glycoprotein present in some cereals. The incidence of disorders related to gluten, including the EC, is increasing, even pathologies far from an etiology or treatment with GFD.

Aims: Review the scientific literature related to the ingestion of gluten and pathogenesis of different diseases.

Methods: A literature search in major scientific database.

Results: We obtained from the following diseases, gluten ataxia, multiple sclerosis, autism spectrum disorder, schizophrenia, attention deficit hyperactivity disorder, depressive disorders, headaches, irritable bowel syndrome, fibromyalgia, dermatitis herpetiformis and epilepsy, studies in which either a determination of gliadin was referred or a treatment, with/without gluten, was applied and evaluated.

Conclusion: The ingestion of gluten seems to be related to disease, when there is no EC, SGNC or wheat allergy. Suspicions about the benefit of GFD as a complementary treatment is borne in semi-clinical trials and cohorts, either as a causal factor in the pathogenesis, or improvement of symptoms.

Resource: Nutr Hosp. 2014;30(6):1203-1210

Ismael San Mauro Martín, Elena Garicano Vilar, Luis Collado Yurrutia y María José Ciudad Cabañas
2014 December

The New Epidemiology of Celiac Disease


The prevalence of celiac disease (CD) varies greatly, but several reports have shown that CD is increasing in frequency in different geographic areas. The increase in prevalence can be partially attributed to the improvement in diagnostic techniques and disease awareness; however the equally well documented rise in incidence in the last 30–40 years cannot be so easily explained. The new epidemiology of CD is now characterized by an increase of new cases in the historical CD areas (northern Europe and the United States) and more interestingly in a spread of the disease in new regions (Asian countries). A significant change in diet habits, particularly in gluten consumption as well as in infant feeding patterns are probably the main factors that can account for these new trends in CD epidemiology.

Resource: Journal of Pediatric Gastroenterology & Nutrition, July 2014 Volume 59
Catassi, C; Gatti, S; Fasano, A;
2014 July

Incidence and Prevalence of Celiac Disease and Dermatitis Herpetiformis in the UK Over Two Decades: Population-Based Study


Few studies have quantified the incidence and prevalence of celiac disease (CD) and dermatitis herpetiformis (DH) nationally and regionally by time and age groups. Understanding this epidemiology is crucial for hypothesizing about causes and quantifying the burden of disease.

Patients with CD or DH were identified in the Clinical Practice Research Datalink between 1990 and 2011. Incidence rates and prevalence were calculated by age, sex, year, and region of residence. Incidence rate ratios (IRR) adjusted for age, sex, and region were calculated with Poisson regression.

A total of 9,087 incident cases of CD and 809 incident cases of DH were identified. Between 1990 and 2011, the incidence rate of CD increased from 5.2 per 100,000 (95% confidence interval (CI), 3.8–6.8) to 19.1 per 100,000 person-years (95% CI, 17.8–20.5; IRR, 3.6; 95% CI, 2.7–4.8). The incidence of DH decreased over the same time period from 1.8 per 100,000 to 0.8 per 100,000 person-years (average annual IRR, 0.96; 95% CI, 0.94–0.97). The absolute incidence of CD per 100,000 person-years ranged from 22.3 in Northern Ireland to 10 in London. There were large regional variations in prevalence for CD but not DH.

We found a fourfold increase in the incidence of CD in the United Kingdom over 22 years, with large regional variations in prevalence. This contrasted with a 4% annual decrease in the incidence of DH, with minimal regional variations in prevalence. These contrasts could reflect differences in diagnosis between CD (serological diagnosis and case finding) and DH (symptomatic presentation) or the possibility that diagnosing and treating CD prevents the development of DH.

Resource: Am J Gastroenterol. May 2014
West, J; Fleming, K; Tata, L; et al.;
2014 May

Coeliac disease

Summary points

Adult coeliac disease is a common autoimmune condition with an estimated prevalence of 1%. Test for coeliac disease in patients with unexplained anaemia, weight loss, diarrhoea, or gastrointestinal symptoms, particularly irritable bowel syndrome, and in first degree relatives of index cases. Confirm the diagnosis with duodenal biopsy in all adult patients. Treatment with a lifelong strict gluten-free diet is currently the only treatment of known effectiveness. Patients should have access to an expert dietitian for advice on a gluten-free diet and for assessment of adherence if symptoms persist on institution of the diet. Regular follow-up is necessary to assess adherence and micronutrient deficiency.
Coeliac disease is a common autoimmune condition characterised by a heightened immunological response to ingested gluten, with estimated prevalence rates in adults of 0.2-1% in the United States and Europe. Contemporary studies suggest that the prevalence of this disease is increasing.3 4 5 Meta-analyses have shown that for every patient identified as having coeliac disease seven to eight remain undiagnosed. Here, we will summarise recent evidence on how the investigation and diagnosis of coeliac disease can be improved and also provide an evidence based approach to managing patients with newly diagnosed coeliac disease and those who do not respond to a gluten-free diet as expected. Evidence is taken from meta-analyses, systematic reviews, and randomised controlled trials where possible.
Sources and selection criteria
We searched Medline and the Cochrane Database of Systematic Reviews with the search terms “coeliac disease” or “celiac disease”. Studies included those in adult and paediatric populations but preference was given to adult studies in the past five years. We focused on meta-analyses and systematic reviews where possible.
Who gets coeliac disease?
In the past coeliac disease was considered to be a disease that affects white populations only, but it is now clear that coeliac disease is a global problem. Clinicians in …

Resource: BMJ 2014; (Published 3 March 2014)

Peter D Mooney, clinical research fellow gastroenterology, Marios Hadjivassiliou, professor of neurology and NHS consultant, David S Sanders, professor of gastroenterology and NHS consultant
2014 March