Frequently Asked Questions About Celiac Disease

1.  What is celiac?
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 a family of 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.  Who does celiac affect?
Celiac affects 2.2 million people -- one in 133 Americans. An overwhelming 97% of the affected population are currently undiagnosed or misdiagnosed.

4.  Why does celiac go undiagnosed?
The average time for proper diagnosis is 9 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 exhibiting 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 masquerader.”

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.

5.  How can celiac be diagnosed?
The path to diagnosis involves a set of blood tests. If the blood tests indicate celiac, the physician may order a biopsy of the small intestine.

6.  What are the causes of celiac?
Celiac is an autoimmune genetic disorder triggered by an intolerance to gluten, a family of proteins found in wheat, barley and rye.

7.  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. Following the diet is a complex, time-consuming, challenging and often expensive undertaking. 

First, gluten-free products are difficult to find in mainstream stores in the United States, and often, these products are more expensive than their counterparts that contain gluten. Secondly, the time that it takes for celiacs to carefully scan and read product labels is significant. Also, label reading is a risky endeavor because manufacturers are not yet required to consistently identify products that have gluten. Lastly, eating away from home is very difficult with cross-contamination risks and limited menu options. 

While a gluten-free diet may bring relief to those who are able to successfully follow and stick to it, the diet itself is not a cure. Further research is needed for a pharmaceutical treatment to replace or enhance the gluten-free diet and to ultimately cure those who suffer needlessly from celiac.

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.

8. 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.