If you or a loved one have celiac disease, wellness is within your grasp.
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Celiac disease affects both children and adults. Inflammation of the small intestinal lining, caused by an immune reaction to gluten-containing foods, decreases the absorption of nutrients — including vitamins and key minerals. The result is “malabsorption” of carbohydrates, fats and sometimes proteins.
Symptoms — gas and bloating, changes in bowel patterns, weight loss, weakness and fatigue — range from mild to severe. Fortunately, they can almost always be improved with a gluten-free diet.
A unique autoimmune disorder
Cleveland Clinic digestive disease specialist Donald Kirby, MD, explains that celiac disease is unique among the spectrum of autoimmune diseases. That’s because we understand its genetics and environmental triggers — namely, wheat, rye and barley.
“It is a lifelong condition, but the treatment is not medication. It is total dietary modification, which is a challenge in today’s culture of prepared foods,” he says.
“A small number of patients don’t respond well to dietary changes — they may not be aware that small amounts of gluten are still getting into their diet. A visit with a registered dietitian can help.”
Symptoms may be misinterpreted
About one in 133 people in the United States have the gene for celiac disease, but most have no symptoms or experience only minor gastrointestinal problems.
“Celiac is often misdiagnosed as irritable bowel syndrome,” says Dr. Kirby. “When treatments for IBS do not improve symptoms, however, we suggest patients have a blood test that can differentiate the two.”
How children are affected
“In children, the initial sign of celiac disease is often failure to gain weight and/or diarrhea,” notes Cleveland Clinic pediatric gastroenterologist Kadakkal Radhakrishnan, MD.
Children with celiac disease usually need to see a gastrointestinal specialist annually. Visits include blood testing to ensure that dietary recommendations are being followed, and to check vitamin and iron status.
The doctor will discuss the need for dietary supplementation with vitamins D or B12, folic acid and/or calcium with parents. Dr. Radhakrishnan also does baseline and follow-up bone density testing as children grow to ensure that the disease process has not affected their bone health.
Family members need testing too
If one family member has celiac disease, says Dr. Radhakrishnan, the risk for other family members is about 10 percent. “When children are diagnosed with celiac, their parents and siblings should be screened. When adults are diagnosed, they should let adult siblings know,” he says.
Dr. Kirby notes that although dietary changes can be challenging, a gluten-free diet can be very healthy. Fortunately, finding gluten-free items, including once-forbidden options like beer and pizza, is easier than ever before.
He says that some restaurants cater to patients with celiac disease, and recommends that people with celiac disease call ahead of time to inquire about a restaurant’s policies.
Should all family members go gluten-free?
Dr. Radhakrishnan says that when a person, especially a child, is diagnosed with celiac disease, the family needs to decide if everyone is going to adopt a gluten-free diet.
“This is a practical decision that each family needs to make on its own. If all family members do not make the change, there needs to be absolutely no sharing plates or utensils,” he concludes.