Prevalence of celiac disease

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 .