Frequently Asked Questions about the Campaign
What is celiac disease?
Celiac disease is an autoimmune disorder in which people cannot tolerate gluten because it damages the lining of their small intestine and prevents absorption of nutrients. Gluten is a protein found in wheat, rye, and barley and in some products such as vitamin and nutrient supplements, lip balms, and certain medications. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.
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 that the disease now affects about one in 100 people in Europe and North America.1 More than 3 million Americans are affected by celiac disease, more than 95 percent of people with the disease remain undiagnosed. Blood tests are available to help diagnose the disease.
1Freeman HJ, Chopra A, Clandinin MT, Thomson ABR. Recent advances in celiac disease. World Journal of Gastroenterology. 2011;17(18):2259–2271.
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. You can read or download a PDF version or subscribe to the Awareness Campaign e-newsletter, Celiac Disease Research and News.
Page last updated March 1, 2012