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The purpose of this site is to provide people who have celiac disease (a.k.a. gluten intolerance) and are not aware of it with a means of figuring out what their problem is, and to help those who know they have it lead more comfortable and healthy lives.

Celiac disease, also known as gluten intolerance, is a genetic disorder that affects between 1 in 300 1 to 1 in 250 2 Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, and malnutrition, to latent symptoms such as isolated nutrient deficiencies but no gastrointestinal symptoms. The disease mostly affects people of European descent, and occurs more rarely in black and Asian populations1. Those affected suffer damage to the villi (shortening and villous flattening) in the lamina propria and crypt regions of their intestines when they eat specific food-grain antigens (toxic amino acid sequences) that are found in wheat, rye, and barley1. Oats have traditionally been considered to be toxic to celiacs, but recent scientific studies have shown otherwise. This research is ongoing, however, and it may be too early to draw solid conclusions.

Because of the broad range of symptoms celiac disease presents, it can be difficult to diagnose. The symptoms can range from "mild weakness, bone pain, and aphthous stomatitis to chronic diarrhea, abdominal bloating, and progressive weight loss.1" If a person with the disorder continues to eat gluten, studies have shown that he or she will increase their chances of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population3. Further, "gastrointestinal carcinoma or lymphoma develops in up to 15 percent of patients with untreated or refractory celiac disease1."

It is therefore imperative that the disease is quickly and properly diagnosed so it can be treated as soon as possible. Based on the figures mentioned above, we can extrapolate the total possible number of people in the United States with this disorder from the total population (248,709,873 4). If we do so we end up with somewhere between 829,032 and 994,839 people with celiac disease! An average of these two numbers leaves us with approximately 912,000 people in the United States who have the disease in its classic or latent form. It is very important that doctors understand just how high these numbers are, and to test their patients when there is any possibility that they might have the disease. Testing is fairly simple and involves either screening the patient's blood for antigliadin (AGA) and endomysium antibodies (EmA), or doing a biopsy on the areas of the intestines mentioned above, which is the still the best way to diagnose the disease.

The only acceptable treatment for celiac disease is strict adherence to a 100% gluten-free diet for life. An adherence to a gluten-free diet can prevent almost all complications caused by the disease1. A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. This site is designed to help people with celiac disease get diagnosed, and make life easier after their diagnosis. Those who are interested can read the story of my diagnosis.

  1. New England Journal of Medicine, May 2, 1996 -- Volume 334, Number 18, "The Many Faces of Celiac Disease" by Charles H. Halsted, M.D.
  2. Gastroenterology, April, 1996 "First Epidemiological Study of Gluten Intolerance in the United States." By Karoly Horvath, M.D., Ph.D., et. al..
  3. Goggins, et. al. "Celiac Disease and Other Nutrient Related Injuries to the Gastrointestinal Tract" The American Journal of Gastroenterology. Vol. 89, No. 8, pages S2 - S13, 1994.
  4. United States Census Bureau, 1990.

Information on this site has been compiled from a variety of sources, including medical journals, books, doctors, scientists and the Celiac Listserv News Group. I would like to especially thank the latter for providing an invaluable source information for celiacs, doctors and researchers.

A free e-mail list has been created for this site to let you know when it is updated, and to give you other important information which cannot be found here. To subscribe, send me an e-mail requesting that you be added to the mailing list. You will receive approximately one e-mail per month.

Please send any questions, comments or additions to Scott Adams at postmaster@celiac.com

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