What you need to know about celiac disease

Gluten-free diets have been gaining popularity in recent years, but for people with celiac disease, avoiding gluten is a necessity, not a fad.

Celiac disease is an autoimmune disorder that causes intestinal damage when triggered by foods that contain gluten, a protein found in barley, wheat, and rye. The National Institute of Diabetes and Digestive and Kidney Diseases says that about 2 million people in the United States have been diagnosed with celiac disease and about 1 percent of people around the world have the condition. As many as 2.5 million Americans could be undiagnosed.

To help understand celiac disease symptoms, causes, and treatment—as well as why the condition often gets overlooked—we spoke with Ritu Verma, MD, chief of the section of pediatric gastroenterology, hepatology, and nutrition, and medical director of the Celiac Disease Center at the University of Chicago Comer Children’s Hospital.

Causes and risk factors

Adults and children of any race and ethnicity can be diagnosed with this condition, but it's most commonly diagnosed in white people. The root cause of the condition remains unclear, but research suggests that only those with a particular gene who eat gluten-containing foods will experience celiac disease symptoms.

“Celiac disease is an autoimmune disease that occurs in genetically susceptible people," Dr. Verma says. The genetic predisposition is common, present in about one-third of the U.S. population, but researchers don't yet know what triggers the disease in some high-risk people and not others.

Certain gene mutations may increase your risk of developing celiac disease. The latest research suggests that "having an infection at the time a child is introduced to gluten or having a gene that seems to change the bacteria in the child's intestinal tract can increase the risk for the disease," says Verma.

A family history of the condition can increase your likelihood of having it, too. Between 4 and 15 percent of those with the condition have a close family member who is also affected, according to Cleveland Clinic. Changes in your health, like pregnancy, childbirth, surgery, and stress can also trigger celiac disease symptoms. Certain conditions, like type 1 diabetes, nervous system disorders, Down syndrome, autoimmune thyroid disease, and rheumatoid arthritis have also been linked to an increased risk of celiac disease.

A variety of symptoms

Celiac disease restricts the body's ability to absorb nutrients, which can lead to vitamin and mineral deficiencies and cause uncomfortable symptoms. No two cases of celiac disease are alike, and children and adults experience different symptoms. Fatigue, diarrhea, and weight loss are among the most common adult symptoms, but they may also experience digestive symptoms like gas, vomiting, bloating, abdominal pain, nausea, and constipation.

More than half of adults with celiac disease will also have non-digestive symptoms, which may include joint pain, acid reflux, arm and leg numbness, anxiety, depression, missed periods, damaged dental enamel, a blistering rash on the knees, elbows, buttocks, and scalp (dermatitis herpetiformis), and anemia, which Verma says is common.

Children younger than 2 years of age most commonly experience celiac disease symptoms like weight loss, diarrhea, and a distended belly, according to Verma. Their symptoms may also include vomiting, chronic headaches, joint pain, and a poor appetite. Adolescents may exhibit similar signs, along with constipation, weight loss, irritability, and bad-smelling or fatty stool.

Most people with the condition present with at least one symptom, but some may not experience digestive sickness or discomfort. Even people with asymptomatic celiac disease are at risk for complications related to insufficient nutrient absorption. Often, these cases are detected when abnormalities are present in routine blood tests, especially when a diagnosis of anemia related to iron deficiency is present.

If you detect any symptoms of celiac disease, don't delay a visit to see a healthcare provider (HCP). Digestive discomfort or diarrhea that lasts for longer than two weeks should be assessed by a physician, as should your child's bloating, irritability, failure to grow or thrive, or bulky and smelly stool.

Diagnosis can be a long process

Diagnosing celiac disease isn't always simple since conditions like irritable bowel syndrome can also present with many of the same symptoms.

At your first HCP visit, you and your provider will discuss your health and your family’s medical history. Your HCP will also perform a physical exam, during which they may check your skin for rashes and abdomen for pain or swelling. If your HCP suspects you may have celiac disease, they will likely order a blood test to check for antibodies common among those with the condition.

If blood tests suggest the presence of the condition, your HCP may then perform an upper endoscopy, says Verma. An endoscopy is a procedure in which a flexible tube with a camera attached is placed down the throat to view the lining of the gastrointestinal tract. A small portion of the intestinal lining may also be removed and analyzed to confirm the diagnosis and assess damage to the small intestine.

Genetic testing for human leukocyte antigens—molecules found on the surface of most cells in the body that play a role in the body's immune response—can help rule out celiac disease.

A dental exam, genetic testing, and skin biopsy may also help a physician make a diagnosis.

Even if you think your symptoms point to celiac disease, don't eliminate gluten from your diet before speaking with your HCP. Doing this could alter your test results.

Treating celiac disease

The only known treatment for celiac disease is a gluten-free diet, according to Verma. Grocery staples like gluten-free pasta, bread, and crackers are available at many stores.

No medications are approved by the U.S. Food and Drug Administration to manage the condition, although there is interest in the research community around clinical trials of potential therapies, according to the Celiac Disease Foundation.

To help manage the condition, HCPs may prescribe supplements for vitamins and minerals your body may have trouble absorbing, like iron and folate. The benefits of treating celiac with a special gluten-free diet are two-fold:

• It helps alleviate uncomfortable symptoms.
• It allows any damaged tissue in the small intestine to heal and begin absorbing nutrients.

Symptoms typically improve within a few days to a few weeks after beginning a celiac disease diet. Intestinal injury should be fully repaired within three to six months in children, but typically takes several years for adults.

"All patients who are newly diagnosed come in for an education session with our nurses and dietitians," Verma says. This team can help create a healthy and gluten-free eating plan that works for you.

Foods like lean meats, beans, legumes, fruits, and vegetables are free of gluten and they're all part of a healthy diet, too. Some foods and beverages, like beer, anything containing malt, refined pasta, breads, pastries, and grains like barley and bulgur, are sources of gluten that should be avoided.

"It can be tough because there are so many items that have hidden food products," says Verma. Checking ingredients lists on prepackaged foods and notifying your server before placing your restaurant order are important. Hidden sources of gluten may include:

• Soups thickened with flour
• Processed lunch meat
• Tortilla chips that are not 100 percent corn-based
• Dressings made with malt vinegar
• Some types of soy sauce
• Some varieties of ice cream
• Certain oats
• Granola bars sweetened with brown rice syrup

There are some non-food sources of gluten, too. The protein can be hidden in vitamins, supplements, and even prescription medications, so it's imperative to check the packaging and speak with your HCP before ingesting.

Products like lip balm, lipstick, lip gloss, and even some kinds of toothpaste may contain amounts of gluten and can unintentionally (and easily) be ingested. Beware of letting young ones with the condition handle play dough, too. If a child eats or touches his or her mouth after playtime, gluten can make its way into the body.

Complications are plentiful

Left untreated, celiac disease can increase your risk for a slew of complications. Intestinal damage makes absorbing nutrients more difficult. Without adequate iron, you could become anemic. Too little absorbed calcium can weaken bones and too few calories can lead to unhealthy weight loss among adults and slow or stunted growth in young ones. Without enough calcium and vitamin D absorption, it may also be difficult to get and stay pregnant.

Not sticking to a gluten-free diet can do serious damage to your small intestine, which can increase the likelihood of developing certain gastrointestinal cancers. Vitamin and mineral deficiencies, lactose intolerance, and gallbladder malfunction also make the list of long-term complications related to unmanaged celiac disease.

“Long term, you can develop liver disease and thyroid disease,” Verma adds.

Sticking to an entirely gluten-free diet is possible and can also be quite healthy when whole foods—like fruits, vegetables, healthy fats, lean protein, and legumes—are the focus of your plate.