You may not have heard of celiac disease but you probably know someone who either has or will be diagnosed with the condition.  It is the most common genetic disorder in the world.  In the U.S. it affects 1 in 133 or roughly 3 million Americans.  The symptoms of celiac disease are not unique.  In fact, they are so common it can take a physician years to make a proper diagnosis.

Individuals with celiac disease are unable to eat foods containing gluten, a protein found in wheat, rye, and barley.  Gluten is the binder which gives bread, and other baked goods, their chewy texture. For those with celiac disease, gluten sets off a reaction which damages the villi, which look like tiny fingers, in the small intestine.  If the villi are blunted or destroyed completely, the body is unable to absorb vital nutrients, leading to malabsorption.  Put another way, the body is starved for nutrition! 

Celiac disease may appear any time after gluten is first introduced into the diet around 4-6 months of age.  It can also remain dormant in the body for years until some event —  the flu, pregnancy, a car accident — trigger the onset of symptoms. In adults the symptoms can include:  anemia, constipation, depression, osteoporosis, diarrhea, fatigue, migraine headaches, joint pain. Children are more likely to have gastrointestinal symptoms such as chronic diarrhea or constipation, as well as growth problems, and irritability. 

The initial screening for celiac disease is done through blood tests to measure levels of certain antibodies, the anti-tissue transglutaminase antibody (tTG) and the anti-endomysial antibody (EMA).  These antibody tests measure your immune system’s response to gluten in the food you eat.  A positive antibody test is just the first step.  Celiac disease must be confirmed by finding certain changes to the villi. This is done by obtaining tissue samples from the small intestine, a procedure known as an endoscopic biopsy. 

The only course of treatment for celiac disease is strict adherence to a gluten free diet.  No drugs, just diet modification.  It is challenging at first, giving up foods you’ve grown to love.  You’ll be pleasantly surprised to know that gluten-free oreos, pasta, and even beer, are tasty and refreshing, too!  A registered dietitian can ease the transition for a newly diagnosed celiac and help to ensure that the patient is receiving proper nutrition.  This is especially important in the first weeks and months after diagnosis. 
Guidance is always needed on the road to good health. The American Celiac Disease Alliance (ACDA) is an umbrella organization for those serving the celiac community and includes the nation’s leading research centers, patient support organizations, gluten-free food manufacturers, and others. We are ready to assist you, your family and friends with information about celiac disease or to provide additional resources. Visit our website at www.americanceliac.org to learn more or feel free to send questions to: info@americanceliac.org. 

Celiac by the numbers:

• 1 in 133 Americans have the genetic condition;
• In first degree relatives the incidence is 1 in 22;
• 95% of those with celiac disease have not been diagnosed;
• About 1/3 of adults with the condition have no outward symptoms;
• About 10% of Type 1 diabetics or individuals with Down Syndrome will also have  celiac disease