Frequently Asked Questions About Celiac Disease

1. What is celiac disease?

Celiac is a hereditary, autoimmune disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate proteins called gluten, found in wheat, rye and barley.

2. What are symptoms of celiac?

Symptoms associated with celiac may include gas, recurring stomach pain and bloating, constipation or diarrhea, weight loss or gain, fatigue, unexplained anemia, bone or joint pain or osteoporosis and fertility or neurological problems. Children with celiac often experience delayed growth as a result of malnutrition. However, some people who test positive for celiac may exhibit no symptoms at all. These "silent celiacs" are at risk for the same long-term complications as other celiacs -- despite their lack of symptoms.

3. What is dermatitis herpetiformis? What does it have to do with celiac disease?

Dermatitis herpetiformis (DH) is a severely itchy skin condition that often starts abruptly, affecting the elbows, knees, buttocks, scalp, and back. It usually starts as little bumps that can become tiny blisters and then are usually scratched off. DH can occur in only one spot, but more often appears in several areas.

While most individuals with DH do not have obvious GI symptoms, almost all have some damage in their intestine. They have the potential for all of the nutritional complications of celiac disease. It is believed by some GI professionals that most DH patients do indeed have celiac disease.

4. Who does celiac affect?

Celiac affects 2.2 million people -- one in 133 Americans. An overwhelming 97% of the affected population is currently undiagnosed or misdiagnosed.

5. Why does celiac go undiagnosed?

The average time for proper diagnosis is 11 years. Patients often go undiagnosed or misdiagnosed for years because their symptoms are easily confused with those of other disorders such as: irritable bowl syndrome, iron-deficiency anemia, Crohn’s disease, diverticulitis, intestinal infection or chronic fatigue syndrome.

Not all celiacs have gastrointestinal symptoms — instead show symptoms such as depression, fatigue, fertility problems, anemia, or skin rashes. Also, it is extremely difficult to diagnose "silent celiacs" (those without digestive or other outward symptoms). For these reasons, celiac has been nicknamed "the great mimic."

Celiac was once classified as a rare disease in the U.S., resulting in a lack of diagnostic expertise among the healthcare community. In 2005, the National Institutes of Health convened and announced its findings that celiac is much more prevalent in the U.S. than previously thought, affecting approximately 1% of the population.

6. How can celiac be diagnosed?

Diagnosis involves a set of blood tests. If the blood tests indicate celiac, the physician may order a biopsy of the small intestine.

7. What are the causes of celiac?

Why celiac is triggered at a certain point is unknown. However, it is the only autoimmune disease that has a known culprit – gluten.

8. How is celiac treated?

While some drug treatments are currently in the research and development phases, there is no known medical or pharmaceutical cure for celiac. The only way to treat celiac is to follow a 100% gluten free diet.

Attitude is everything when living a gluten free lifestyle. A positive attitude, rooted in the knowledge that living gluten free can eliminate symptoms and help one’s body heal from the ravages of celiac, helps patients as they make the extra effort to become more educated, read labels, speak to restaurant staff and resist the temptation to "cheat" on the diet.

9. What are the long-term effects of untreated celiac?

In addition to damage of the small intestine, long-term effects of undiagnosed or untreated celiac disease include cancer, osteoporosis, miscarriage, an increased risk of fetal congenital malformation in pregnant women and delayed growth and short stature in children. While symptoms may show improvement when a gluten free diet is followed, more research is needed to determine long-term consequences of celiac and, ultimately, discover a cure.