What is Celiac Disease?

Celiac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine. The small intestine is connected to the stomach�the first parts of the small intestine, the duodenum and the jejunum, are where celiac disease is commonly found.

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.

Specifically, tiny fingerlike protrusions, called villi, on the lining of the small intestine are lost. Nutrients from food are absorbed into the bloodstream through these villi. Celiac disease can be associated to other autoimmune disorders and, undiagnosed and untreated, it can lead to osteoporosis, infertility, neurological conditions and in rare cases, cancer.

What is dermatitis herpetiformis (DH)?

Dermatitis herpetiformis (DH) is an itchy, blistering skin condition that is commonly regarded as a form of celiac disease. The rash usually occurs on the elbows, knees, and buttocks and is characterized by its bilateral nature; both knees (and/or both arms) are affected, seldom just one. Many people with DH have no digestive symptoms: however, they almost always have the same intestinal damage as people with celiac disease.

The University of Chicago Celiac Disease Program refers to celiac disease and dermatitis herpetiformis as celiac disease. Unless otherwise specified, the information pertaining to celiac disease in our materials also pertains to people with dermatitis herpetiformis. (The diagnosis and treatment of DH, is different than for more common forms of celiac disease and we discuss this in later FAQ�s.)

Is celiac disease a rare condition?

No. Celiac disease affects 1 in 133 Americans, or 2.2 million people in the United States. By comparison, Alzheimers disease affects approximately 2 million people. It is possible to be diagnosed with celiac disease at any age.

Is it possible to have celiac disease and NO symptoms?

YES. Recent research has demonstrated that a significant percentage of children and adults with positive celiac blood tests (indicating that a biopsy is warranted to determine a diagnosis) had no symptoms when they were tested.

Why is it difficult to find a doctor that knows about celiac disease?

Most physicians learned during medical school that celiac disease was so rare they would never see a patient with symptoms in their entire medical career. Lectures on celiac disease in medical schools, even today, are few and far between. When your doctor was in medical school, he or she may have heard a 20-30 minute celiac disease lecture during four years of classes. Medical textbooks still contain outdated information.

A widely treated condition in Europe, most physicians find that the symptoms experienced by American celiacs are far different than those of their European counterparts. This makes the process of diagnosing celiac disease more difficult for physicians in the US because symptoms are seemingly unrelated, such as fatigue, joint pain, anemia and infertility.

A physician who is receptive to new information about celiac disease can be an important resource for you and your family. While it may seem unfair that you have to learn about celiac disease on your own, and then educate your  physician, this is the reality for many people seeking a celiac diagnosis in the U. S. It may help to remember that you are not alone�there are important efforts currently underway to educate physicians in this country. Your work is a public service, not only for yourself and your family, but for the next person who is ill and needing medical attention for celiac disease.