Frequently Asked Questions about the Awareness Campaign
What is celiac disease?
Celiac disease is an immune reaction to gluten, a protein found in wheat, rye, and barley. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, people with celiac disease cannot get the nutrients they need to stay healthy. This lack of nutrients can cause a host of health problems, such as diarrhea, osteoporosis, hair loss, anemia, and infertility.
What is the NIH Celiac Disease Awareness Campaign?
The NIH Celiac Disease Awareness Campaign seeks to heighten awareness of celiac disease among health care professionals and the public. The Awareness Campaign stems from consensus recommendations of an independent panel of experts convened by the NIH to assess current diagnosis, treatment, and management of the disease. The consensus panel concluded that as much as 1 percent of the U.S. population has celiac disease, but the vast majority remain undiagnosed. To address this disparity, the panel recommended that the NIH spearhead efforts to educate health care providers and the public about the disease. Officially launched in 2006, the Awareness Campaign was developed by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the NIH, with coordination among the professional and voluntary organizations working on celiac disease.
What does the Awareness Campaign do?
The Awareness Campaign offers materials and resources for health care professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease. The Awareness Campaign provides fact sheets, booklets, practice tools for health care professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease. All of these resources are available through the Awareness Campaign’s website at www.celiac.nih.gov and the National Digestive Diseases Information Clearinghouse, a service of the NIH’s National Institute of Diabetes and Digestive and Kidney Diseases. The Awareness Campaign distributes resources through an exhibit booth at national conferences and publishes an e-newsletter with information about celiac disease resources, meetings, and other activities.
Why is a national campaign about celiac disease necessary?
Until recently, celiac disease was thought to be uncommon in the United States. However, recent findings estimate about 2 million people in the United States have celiac disease, or about one in every 133 people. More than 95 percent of people with the disease remain undiagnosed. Blood tests are available to help diagnose the disease.
The disease is largely underdiagnosed for several reasons. Celiac disease can present through a broad range of symptoms, many of which physicians do not readily associate with the disease. In addition, many of the symptoms are attributed to other diseases and conditions, ultimately leading to the wrong diagnosis.
Experts who attended an NIH Consensus Development Conference on Celiac Disease in June 2004 determined that increasing physician awareness of the various manifestations of celiac disease and appropriate use of available testing strategies could lead to earlier diagnosis and better outcomes for celiac patients. A national campaign is the vehicle through which to convey these important messages to the health community and the public.
What is the main goal of the Awareness Campaign?
The Awareness Campaign seeks to raise awareness among health care professionals and the public about the
- prevalence of celiac disease in the United States
- availability and validity of blood testing as a diagnostic tool
- health consequences associated with celiac disease
- misperception that celiac disease is just a gastrointestinal disease
How is the Awareness Campaign funded?
The Awareness Campaign is funded through the NIH, which receives its funding through congressional appropriations.
Is there a cure for celiac disease?
Although there is currently no cure, celiac disease, in most cases, can be successfully treated by adhering to a gluten-free diet.
Where can people go for more information about celiac disease?
The Awareness Campaign’s website, www.celiac.nih.gov, has more information about celiac disease, as well as a list of celiac disease organizations. To sign up for the Awareness Campaign e-newsletter, Celiac Disease News, go to www.celiac.nih.gov/NewsletterSubscription.aspx.