In the largest multi-center epidemiologic study ever performed to establish the prevalence of Celiac Disease in the United States, researchers from the University of Maryland report that the immune-mediated condition in which the body (and in particular the digestive tract) reacts to gluten is a much greater problem in the United States than has previously been appreciated. The study of more than 13,000 people in 32 states found the overall prevalence of Celiac to be 1 in 133 people in the U.S.; for people with an immediate family member with Celiac the prevalence was much higher at 1 in 22.
The authors suggest that previous studies have underestimated the prevalence of Celiac because they failed to take into account atypical and silent forms (without gastrointestinal symptoms) that were frequently detected in this study. Of particular interest was the high prevalence of Celiac found among individuals affected by numerous common disorders, including type 1 diabetes mellitus, anemia, arthritis, osteoporosis, infertility, and Down syndrome, even in the absence of gastrointestinal symptoms. Among not-at-risk subjects (for example, people without significant family history) the prevalence of Celiac in adults was significantly higher (1:105) than in children (1:320), suggesting a correlation between the duration of gluten exposure and the development of an immune response to gluten in genetically susceptible individuals.
"If Celiac is as common in the United States as our study suggests," the authors write, "One must question why it is not diagnosed more frequently."
Foremost among the possible explanations for missed diagnosis of Celiac is that if physicians believe Celiac is rare, they are less likely to test for it. A failure by physicians to appreciate that many individuals with the disease initially present without gastrointestinal symptoms is another reason why Celiac testing may not be performed, according to the study authors. A recently published survey of 1612 patients with Celiac in the United States revealed that the average gap between the onset of symptoms and the time diagnosis was confirmed was 11 years.
Living with undiagnosed Celiac can lead to nutrient deficiencies, fatigue and, for children, delayed growth. Hopefully this study will raise awareness and help people get diagnosed--and treated--earlier.