Prevalence of celiac disease in the United States

University of Chicago Celiac Disease Program
Facts and Figures 2003
Celiac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine. When a person who has celiac disease consumes gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body. Undiagnosed and untreated, celiac disease can lead to the development of other autoimmune disorders, as well as osteoporosis, infertility, neurological conditions and in rare cases, cancer.

Prevalence of celiac disease in the United States

In average healthy people: 1 in 133

In people with related symptoms: 1 in 56

In people with first-degree relatives (parent, child, sibling) who are celiac: 1 in 22

In people with second-degree relatives (aunt, uncle, cousin) who are celiac: 1 in 39

Estimated prevalence for African-, Hispanic- and Asian-Americans: 1 in 236

In the landmark prevalence study on celiac disease, investigators determined that 60% of children and 41% of adults diagnosed during the study were asymptomatic (without any symptoms).
During the prevalence study, researchers found that 21% of patients with a positive anti-endomysial antibody test could not receive a biopsy due to the refusal of their physician to perform the procedure or the insurance company to pay for it.
Only 35% of newly diagnosed patients had chronic diarrhea, dispelling the myth that diarrhea must be present to diagnose celiac disease.

Source: A multi-center study on the sero-prevalence of celiac disease in the United States among both at risk and not at risk groups. Fasano et. al., Archives of Internal Medicine. February 2003.

Celiac disease affects 2.2 million Americans, of which 276,440 are from the Midwest, 94,742 are from Illinois and 55,255 are from the Chicago area.
The average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the US is eleven years; this type of delay dramatically increases an individual’s risk of developing autoimmune disorders, neurological problems, osteoporosis and even cancer.

Source: Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et.al. American Journal of Gastroenterology, 2001.

The incidence of autoimmune diseases in the general US population is 3.5%. In a 1999 study, Ventura, et.al. found that those diagnosed with celiac disease between 2-4 years of age had a 10.5% chance of developing an autoimmune disorder. Additional findings are outlined in the table below:

Age at diagnosis	Chance of developing autoimmune condition
4 – 12 years of age	16.7%
12 – 20 years of age	27%
Over 20 years of age	34%

Source: Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease. SIGEP Study Group for Autoimmune Disorders in Celiac Disease. Ventura A, et.al. Gastroenterology 1999 Aug;117(2):297-303.

Chronic Illness in the United States

Below is a list of some commonly known chronic illnesses and the number of people affected in the United States:

Epilepsy affects 2.8 million
2 million people have Alzheimer’s Disease
Cystic Fibrosis affects 30,000 people
17,000 people are living with hemophilia
Parkinson’s disease affects 500,000 individuals
Autism affects 556,000 Americans
Ulcerative colitis affects 500,000 people
Crohn’s disease affects 500,000 Americans
2.1 million Americans are living with rheumatoid arthritis
Lupus affects 1.5 million people
Multiple sclerosis affects 333,000 people in the United States

Source: National Institutes of Health.

Putting Celiac Disease in Perspective

Type 1 Diabetes affects 1,177,500 people; 6% (70,650) of those diagnosed also have celiac disease.
610,000 women in the US experience unexplained infertility; 6% (36,600) of these women might never learn that celiac disease is the cause.
350,000 people in the United States are living with Down Syndrome; 12% (42,000) of them also have celiac disease.

The number of people with celiac disease in the U.S. would fill 4,400 Boeing 747 airplanes.
It would take 936 cruise ships to hold every American with celiac disease.
Americans with celiac disease could fill Comiskey Park (now US Cellular Field, with 40,000 seats) to watch the Chicago White Sox¾ 55 times.
U.S. fans with celiac disease could fill Soldier Field, the home of the Chicago Bears, 37 times.
The number of people with celiac disease in the U.S. is roughly equal to the number of people living in the state of Nevada.
Alaska, Delaware, Washington DC, Hawaii, Idaho, Maine, Montana, Nebraska, New Hampshire, New Mexico, North Dakota, Rhode Island, South Dakota, Utah and Vermont all have populations that are less than 2,200,000¾ the number of people living with celiac disease in the United States.

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Updated 25Feb03