Fatigue? Bloating? Aching Joints? You May Have Celiac Disease

More than 80 percent of people with this autoimmune disease don't know they have it.

Gluten-free diets have recently gained popularity, but for people with celiac disease, avoiding it 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. An estimated 1 in 100 people worldwide have the condition, characterized by symptoms like abdominal pain, bloating, diarrhea and fatigue, but as many as 2.5 million Americans could be undiagnosed. 

To help understand why the condition gets overlooked, in addition to celiac disease symptoms, causes and treatment, we spoke with Ritu Verma, MBChB, a pediatric gastroenterologist, Chief of the Division of Gastroenterology and Director of the Center for Celiac Disease at the University of Chicago Comer Children’s Hospital in Chicago, Illinois. 

Causes and risk factors 
Adults and children of any race and ethnicity can be diagnosed with the condition, but it's most commonly diagnosed in Caucasians. The root cause of the condition remains unclear, but research suggests only those with a particular gene and 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 US 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 "having an infection at the time a child is introduced to gluten or gene that seems to change the bacteria in the child's intestinal tract can increase the risk [for the disease]," according to Verma. 

A family history of the condition can increase your likelihood of having it too. Between 10 and 20 percent of those with the disease have a close family member who is also affected. 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, causing uncomfortable symptoms. No two cases of celiac disease are alike, and children and adults especially experience different symptoms. Fatigue, diarrhea and weight loss are among the most common adult symptoms, but they may also experience digestive symptoms like gas, bloating, abdominal pain, nausea, vomiting and constipation. More than half of adults with this condition will also have non-digestive symptoms, like 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 most commonly experience celiac disease symptoms like weight loss, diarrhea and a distended belly, according to Verma, but 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. Certainly, if symptoms of the condition are present, don't delay a visit to the doctor. Digestive discomfort or diarrhea that last 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 doctor visit, you and your primary care physician or gastroenterologist will discuss your health and your family’s medical history. Your doctor will also perform a physical exam, during which they may check your skin for rashes and abdomen for pain or swelling. If your care provider 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 provider may then perform an upper endoscopy, according to Verma. An endoscopy is a procedure in which a flexible tube affixed with a camera 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. 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 doctor. 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. No medications are available to manage the condition, although doctors may prescribe supplements for vitamins and minerals your body may have trouble absorbing, like iron and folate. The benefits of treating the disease with a special diet are two-fold: avoiding gluten helps alleviate symptoms and 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 that 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. Naturally, 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, 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. Some hidden sources of gluten include: 

  • Some soy sauces 
  • Soups thickened with flour 
  • Processed lunch meat 
  • Tortilla chips that are not 100 percent corn-based 
  • Dressings made with malt vinegar 
  • 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 healthcare provider before ingesting. Products like lipstick and lip gloss may also contain 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 to 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, women may have difficulty getting and staying pregnant. 

Not sticking to a gluten-free diet can do some serious damage to your small intestine, which can increase the likelihood of developing related 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 be incredibly healthy when whole foods, like fruits, veggies, healthy fats, lean protein and legumes are the focus of your plate. 

Medically reviewed in August 2018. Updated in March 2021. 

More On

Prevent Stomach Cancer with Greek Foods


Prevent Stomach Cancer with Greek Foods
You could cut your risk of stomach cancer by a whopping 33% if you eat like a Greek. That means bulking up on Greek foods like fruit, vegetables, leg...
6 Ways to Enjoy Food Despite Ulcerative Colitis


6 Ways to Enjoy Food Despite Ulcerative Colitis
These expert tips can help you take comfort in food again.
How to Make Gas Go Unnoticed


How to Make Gas Go Unnoticed
The average person passes gas about 14 times a day, and normally it doesn't smell bad. But what about when it does? Here's one tip. Go easy on eggs, ...
Irritable Bowels: Could Gluten Be to Blame?


Irritable Bowels: Could Gluten Be to Blame?
The most common diagnosis for people who suffer from unexplained and chronic diarrhea and constipation is irritable bowel syndrome (IBS), but many peo...
4 Surprising Heartburn Facts


4 Surprising Heartburn Facts
Heartburn's simple, right? Eat too much (like five trips at the all-you-can-eat buffet), or eat the wrong things (like Uncle Joe's "inferno" chicken w...