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BEN NILES

as he works to raise $10,000 in support of our mission Ben is Going the Distance for Families Facing Celiac Disease because his wife and daughter were both recently diagnosed

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Facts About Celiac Disease



Introduction

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.

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Statistics

Prevalence of Celiac Disease in the US1

  • 1 in 133. Prevalence of celiac disease in average healthy people.
  • 1 in 56. Prevalence of celiac disease in people with related symptoms.
  • 1 in 22. Prevalence of celiac disease in people with first degree relatives who have celiac disease (parent, child, sibling).
  • 1 in 39. Prevalence of Celiac Disease in people with second degree relatives who have celiac disease (uncle, aunt, cousin).
  • 1 in 236. Prevalence of celiac disease for African, Hispanic and Asian-Americans.

  • 60% of children and 41% of adults diagnosed were asymptomatic (without symptoms).
  • Only 35% of newly diagnosed patients had chronic diarrhea, dispelling the myth that diarrhea must be present to diagnose celiac disease.
  • 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.



  • Celiac disease affects 2.2 millions Americans, of which:

    • 276,440 are from the Midwest
    • 94,742 are from Illinois
    • 55,255 are from the Chicago area
  • The average length of time it takes for a person to be diagnosed with celiac disease in the U.S. is eleven years.2 This type of delay dramatically increases an individual's risk to develop autoimmune disorders, neurological problems, osteoporosis and even cancer.
  • The incidence of autoimmune disease in the general U.S. population is 3.5%.
  • In a 1999 study, Ventura et al.3 measured the likelihood of developing an autoimmune disorder based on the age at which celiac disease is diagnosed:

    • 2-4 years of age -- 10.5% chance of developing autoimmune disorder.
    • 4-12 years of age -- 16.7% chance of developing autoimmune disorder.
    • 12-20 years of age -- 27% chance of developing autoimmune disorder.
    • Over 20 years of age -- 34% chance of developing autoimmune disorder.



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References

  1. 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.
  2. Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et al., American Journal of Gastroenterology. 2001.
  3. Duration of exposure to gluten and risk of autoimmune disorders in patients with celiac disease. SIGEP Study Group for Autoimmune Disorders in Celiac Disease. Ventura, et al., Gastroenterology 1999 Aug.; 117(2):297-303.

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