By Judy Fortin
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(CNN) -- An estimated 3 million Americans have celiac disease, but most don't even know it. CNN medical correspondent Judy Fortin learned more about the ailment from Dr. Cynthia Rudert, gastroenterologist and medical adviser for the Celiac Foundation, a national awareness organization.
Fortin: What is celiac disease?
Rudert: Celiac disease is an autoimmune illness. An autoimmune illness is when your body turns against itself. Celiac is not an allergy and it's not a food intolerance. People with celiac need to avoid anything that contains gluten. Gluten is in breads, cereals, soups, sauces, pizza and even medication. (Watch a mother and son learn to deal with celiac disease. )
Fortin: What happens when someone with celiac disease eats gluten?
Rudert: Their villi in the small intestine start to break off. You can take a biopsy in the small intestine and under the magnifying glass those villi look like long fingers. They should be nice and long. In celiac disease, if you have the gene and you're eating gluten those tips start to break off. You can develop malabsorption of nutrients.
Fortin: Is gluten often a hidden ingredient?
Rudert: Yes, and it's these hidden glutens that are initially really challenging. You really have to re-educate yourself how you're going to shop, and that can take months. I tell patients there is about a four-month learning curve because you will look at foods differently.
Fortin: How common is celiac in the United States?
Rudert: Celiac disease is the most common inherited autoimmune illness in America. It's thought to affect 1 percent of the entire U.S. population. Ninety-eight percent of them do not know they have the disease. (Visit the National Foundation for Celiac Awareness. )
Fortin: How long does it usually take to get a diagnosis?
Rudert: It's been published that the average patient has a seven-year delay in diagnosis. In seven years, many of these folks have seen five, six, seven or more physicians. They languish under other misdiagnoses, commonly: irritable bowel syndrome, spastic colon, abdominal pain, reflux. But you don't have to have gastrointestinal or GI symptoms to have celiac disease.
Fortin: Why is it so difficult to recognize the disease?
Rudert: I think because physicians were taught it was very rare, so they never screened for it and they didn't look for it. It wasn't until maybe 10 years ago that really good blood testing was available and that is the first line of diagnosis. If you think someone has celiac you should pursue it. The first step may be blood testing. It looks at certain components and antibodies.
Fortin: Can the disease be triggered?
Rudert: There are triggers that initiate the onset of celiac disease and we haven't figured out all the triggers that could be involved in the equation. Is it post-partum? I see that a lot. Is it pregnancy itself? Infections can also be a trigger, or overuse of antibiotics. Researchers are looking at a way to turn off the gene.
Fortin: Is it hereditary?
Rudert: Forty percent of all Americans have the gene. It's now recommended if you have a family member with celiac, then you be screened.
Fortin: Can the damage to the intestines be repaired?
Rudert: The damage can be repaired and that's the good news. Once you initiate a gluten-free diet, the villi will start to heal and completely heal in children in six months, adults within one, maybe two, years or less.
Judy Fortin is a correspondent with CNN Medical News.
Old eating habits changed quickly for Virginia Brookhart when she learned that she and her son both have celiac disease.
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