You’re likely somewhat familiar with celiac disease, a serious autoimmune disorder that causes certain people to experience small intestine damage when they consume gluten.
Those afflicted often experience gastrointestinal symptoms like stomach pain, bloating, constipation, gas and diarrhea. But not everyone does. In fact, you can have “silent celiac” and have no idea.
Below, GI specialists explain what silent celiac is, how it’s diagnosed and treated and what to look out for.
What is silent celiac?
“‘Silent’ celiac disease is when someone has celiac disease, a reaction to the gluten protein, but they do not manifest symptoms from the disease,” said Dr. Rabia De Latour, a gastroenterologist and assistant professor of medicine at NYU Grossman School of Medicine. “They can have the physical manifestations of the disease like small bowel inflammation but without the GI symptoms like diarrhea and abdominal pain.”
As such, the form of celiac often called “silent” celiac can also be referred to as “asymptomatic” celiac.
“This is a rare form of celiac, as usually patients develop GI symptoms from the malabsorption, which is secondary to the intestinal damage caused by the celiac disease,” said Dr. Kevin Cronley, a gastroenterologist with Gastro Health in Cincinnati.
Although the idea of silent celiac presumes you have no symptoms of the disease, some people might simply not realize they’re experiencing mild symptoms.
“For probably a portion of those patients who think they have no symptoms, they discover that they did have symptoms and feel much better once they go on a gluten-free diet,” said Dr. David Kastenberg, chief of the division of gastroenterology and hepatology at Jefferson Health in the Greater Philadelphia area. “They weren’t aware that they had symptoms because they thought things like headaches, joint aches, chronic sinus problems or muscle aches were just part of their normal everyday life rather than celiac.”
How is it diagnosed?
Because this manifestation of celiac disease does not involve clear symptoms, many people go undiagnosed.
“Silent celiac disease is underdiagnosed, and physicians should have a low threshold to test for it if there are any laboratory abnormalities suggestive of celiac, family history of celiac disease, or other conditions which celiac can be associated with,” Cronley said.
As he noted, further inspection of lab abnormalities are typically the way people with the disease wind up with a diagnosis.
“Someone might have silent GI symptoms but may have abnormal lab findings or nonspecific generalized symptoms like fatigue and headaches,” De Latour noted. “Going to your doctor for regular checkups with appropriate blood work can pick up the lab work signs of celiac before your symptoms might. Someone might have blood work findings suggesting they are not absorbing certain nutrients well from their food due to the gut inflammation.”
If a patient’s bloodwork shows iron deficiency or elevated liver function, for instance, doctors may then check for celiac by doing a blood test for certain antibodies, like tissue transglutaminase antibody. They can also do an upper endoscopy to look at the GI tract and take a sample of tissue from the small intestine.
“Silent celiac might be ‘unsilenced’ if someone is getting an upper endoscopy for something separate like acid reflux and the findings suggest celiac, leading them to go on and do blood tests,” Kastenberg said. “People also need to take notice when someone is at a higher risk for having celiac, like having a first-degree relative with celiac or concomitant medical problem like autoimmune thyroid disease.”
He noted that conditions like type 1 diabetes, Down syndrome and certain skin rashes are also associated with increased risk of celiac disease.
How is it treated?
The good news is there’s a clear and effective treatment for celiac disease, silent or otherwise. The bad news is it calls for a big lifestyle change.
“The treatment for celiac disease is a gluten-free diet,” Cronley said. “Gluten is a protein that is found in wheat that the body will confuse with the lining of the patient’s intestines, causing damage to the intestines. This intestinal injury can result in symptoms of malabsorption, vitamin deficiencies, and can increase the risk of cancer of the small intestine.”
To remove this harmful protein from the equation and reduce the inflammation, patients must completely cut gluten out of their diets.
“For sicker patients, there are more intense therapies, but this is less common,” De Latour noted.
Fortunately, there’s now more awareness and understanding around gluten-free eating than in the past.
“Gluten-free diets are popular right now because in general, people feel better on a gluten-free diet by eating less processed foods,” Cronley said. “If you think you may have celiac, seek an evaluation by a physician who can properly evaluate you for the disease.”
Once you get the celiac diagnosis, it’s important to make those dietary changes, even if you don’t feel symptoms after eating gluten.
“Silent celiac is really celiac disease, so it’s serious,” Kastenberg said. “It’s hard for people to accept that when they feel perfectly fine. If you feel terrible when you have gluten, you get that feedback that you shouldn’t eat that thing. But if you aren’t so sensitive and can eat gluten all the time without feeling it, you aren’t getting that feedback that it’s a problem for you.”
But you need to recognize that silent celiac should be taken just as seriously. Ignoring it can lead to long-term issues.
“Even if you feel well, your small intestine is not well,” Kastenberg emphasized. “It’s not functioning properly, and there are lots of potential consequences like an increased risk for osteoporosis, nutritional deficiencies, malignancies and even reproductive and pregnancy-related issues like low birth weight or spontaneous abortion. If you have celiac, it’s important to tell your family members to get screened as well. Catching it early makes a big difference.”
