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If you’ve ever felt bloated or fatigued after eating a slice of pizza or a toasted bagel, it could be more than indigestion alone. Celiac disease is an underdiagnosed and serious chronic condition that affects some 2 million people in the U.S. each year and millions more across the globe. For the individuals dealing with it, avoiding gluten is anything but a “fad” diet; it’s a medical necessity. “Celiac disease is an autoimmune disorder in which eating the gluten that’s found in wheat, barley and rye leads to the body’s immune cells attacking the lining of the small intestine,” explains Dr. Marie Robert, a surgical pathologist at Yale School of Medicine New Haven Hospital.
This can cause a wide variety of unwanted symptoms in both adults and kids alike. “While in the past celiac disease was thought to mainly affect children, it is now clear that it can occur at any age,” says Dr. Alessio Fasano, a professor of nutrition at Harvard T.H. Chan School of Public Health and the pediatrics director of the Center for Celiac Research and Treatment at Massachusetts General Hospital.
Here’s what the most common symptoms of celiac disease are, what causes it and how it is usually treated.
What are the symptoms of celiac disease?
Celiac disease is a notoriously elusive condition because its symptoms vary in severity and can look different from one person to the next. Digestive issues are the most common symptom, and include “bloating, stomach pain and diarrhea,” says Dr. Runa Watkins, a division chief in the pediatric gastroenterology and nutrition division at the University of Maryland School of Medicine.
But because “there is no tissue or organ that’s spared by the inflammatory process started by celiac disease,” Fasano explains, many people with the disease also have non-gastrointestinal symptoms. These symptoms may include fatigue, anemia, joint pain, skin rashes and neurological symptoms like depression, brain fog, mood swings or headaches. “Reproductive issues such as infertility are also not uncommon,” adds Robert.
Kids with celiac disease may also experience growth delays and short stature. “Growth failure in children is another common sign of the disease,” says Dr. Peter Green, a physician and professor at the Celiac Disease Center at Columbia University.
And when celiac disease goes untreated or undiagnosed – as it commonly does – the condition can lead to more serious complications such as other autoimmune diseases and osteoporosis. There’s also a potential for increased risk of cancerous tumors and fractures due to chronic nutrient deficiencies.
Due to all such factors, “those with celiac disease face a higher mortality rate than the general population,” says Green.
What causes celiac disease?
While the exact cause of celiac disease is not always known, Watkins says it’s usually driven by a mix of genetic and environmental factors. When it comes to genetic associations, research shows that the strongest link is someone having what are known as the HLA-DQ2 or HLA-DQ8 gene variants. “Because of these genes, up to 10% to 15% of first-degree relatives of celiac disease patients are affected,” says Fasano.
As for environmental factors, eating gluten is what most commonly triggers symptoms in people with celiac disease, but “changes in the gut ecosystem – often caused by an infection (especially during childhood), surgery or stress – can also start the march from genetic predisposition to clinical outcome,” explains Fasano.
How is celiac disease treated?
As of now, the only treatment for celiac disease is a strict gluten-free diet. “Even small amounts of gluten, like crumbs from a toaster, can cause damage and symptoms,” says Watkins. But once gluten is eliminated completely, many patients feel better within weeks – though recovery may take longer for some people.
Most of these patients work with a medical provider or dietitian to identify and eliminate food sources that contain gluten and to get recommendations on how to make up for nutritional deficiencies. This can be easier said than done though as, in addition to being a protein naturally found in many grains, gluten is “often added to processed foods as a filler,” says Fasano. “Sauces, candies and even some meats may contain it.”
And for a small number of patients, even committing wholly to a gluten-free diet won’t be enough to stave off symptoms. This is due to a rare condition called refractory celiac disease, which requires specialized treatment.
For these and all patients with celiac disease, “there are numerous clinical trials attempting to find medicines that will prevent the associated inflammatory response,” says Robert. “Hopefully, it’s only a matter of time before there will be medicines that can make living with celiac disease easier.”
