In the spring of 2014 while studying abroad in Italy, college junior Erin* first developed symptoms of anxiety—excessive worrying about unlikely events, difficulty concentrating on her school work and troubling thoughts that seemed to race at times.
Erin chalked up the anxiety to be being abroad and the frequent travel, unfamiliar landscape and spotty cell service. She told herself it would go away when she got home later that spring. But when it didn’t get better stateside, she saw her doctor, who suggested counseling and prescribed Lexapro, a medication for anxiety. At the same time, she went to a doctor for a persistent cough she’d developed in Italy. The doctor thought he saw something further down her throat and sent her to a gastroenterologist for an endoscopy, a procedure to examine the esophagus and small intestine.
“I was shocked to find out I had celiac disease,” says Erin, who followed up with celiac blood tests as well as a genetic test. All were positive.
Erin had a hunch her anxiety was somehow linked to celiac disease; the timing seemed too close to be coincidental. “I told my therapist about my celiac disease and I told my gastroenterologist about my anxiety, but neither one really connected the two—or seemed particularly interested in a link.”
Is There a Connection Between Celiac Disease and Anxiety?
In fact, anxiety and celiac disease can and often do co-occur.
“I see people with anxiety everyday,” says Amy Burkhart, MD, RD, an integrative medicine physician and celiac specialist in Northern California. “Anxiety is an incredibly common and important issue in celiac disease—but it’s often overlooked.”
Recent studies have documented a link between celiac disease and several mental health conditions, including anxiety and depression. Anxiety and depression can even be the primary symptoms that lead to a diagnosis of celiac disease.
“In the clinic, we tend to see that patients have a variety of symptoms and a common occurrence is anxiety and depression together,” says Danielle Arigo, PhD, assistant professor of psychology at Rowan University in New Jersey.
What gets tricky is that some symptoms of anxiety and depressive disorders can be the same, Arigo says. These symptoms—especially fatigue, sleep disorders and headache—can also overlap with symptoms associated with celiac disease.
Whether anxiety is more common in people with celiac disease than in the general population has been the subject of several recent studies. Many of these studies have reached differing conclusions, in part due to different comparison populations, says Benjamin Lebwohl, MD, a celiac expert at the Celiac Disease Center at Columbia University in New York.
For example, compared to the general population of healthy adults, people with celiac disease are more likely to report symptoms of anxiety and depression. But compared to people with other chronic conditions apart from celiac disease, there might not be a difference.
Lebwohl says it doesn’t matter, as it is important either way. “Enough people with celiac disease are living with anxiety,” he says.
Stressors in Celiac Disease
Experts have a number of theories—none of them mutually exclusive—for the co-occurrence of anxiety and celiac disease.
Nutrient deficiencies as well as imbalances in the gut biome or the gut-brain connection could play a role.
Other contributors include feeling sick or fatigued in the months and years before a celiac diagnosis, says Shayna Coburn, PhD, assistant professor of pediatrics and psychiatry & behavioral sciences at Children’s National Health System Celiac Disease Program in Washington, D.C. “The stress of not feeling well and not knowing why, or dealing with embarrassing and unpredictable gastrointestinal symptoms can be a significant source of stress and anxiety,” she says.
On top of that, managing a chronic disease and a new diet introduces yet another set of potential stressors.
“Gluten is everywhere, and the risk of cross contamination is a constant presence,” Lebwohl says. “Particularly among those predisposed to anxiety, this can become a focal point of one’s anxiety.”
In fact, the fear of cross contact can be so strong it can prevent one from dining out, resulting in a gradual closing off of one’s social life. Others might develop a fear of close relationships, concerned that friends will not understand or will be easily frustrated. Some people may even avoid intimacy, including kissing, because of potential exposure to gluten. Children (or their parents) may be fearful of the school environment because of gluten-filled lunch boxes, snack tables and classroom celebrations. Some people, particularly those whose celiac disease wasn’t confirmed by biopsy, may cut out multiple foods in hopes of avoiding symptoms, bordering on disordered eating, Lebwohl says.
But perhaps the most universal experience for those with anxiety and celiac disease is a worsening of their anxiety after inadvertent exposure to gluten—aka, a glutening.
Anxiety After Getting Glutened
Erin’s anxiety is at its worst when she knows—or suspects—that she’s been accidentally glutened. It happened last summer while she was on vacation in Mexico with her boyfriend. For several days, she’d successfully navigated the buffet, sticking to the plain chicken, white rice and steamed veggies. But on the third day, something was different about the veggies. “I took a bite and could tell they weren’t just steamed in butter, as before.” There was the unmistakable flavor of malt vinegar—not safe on a gluten-free diet.
Despite trying to keep calm with deep breathing techniques, Erin’s thoughts were racing. Before long, she was in the throes of a panic attack. She was so overcome by fear she couldn’t speak to her worried boyfriend.
“I was totally paralyzed and ended up throwing up,” she says. “I don’t know if the panic attack caused me to be sick or if the gluten upset my stomach. In a twisted way, I was relieved to have it out of my system, even though I know that’s not healthy or even a reliable way to get ‘rid’ of accidental gluten.”
The episode set her back—she found herself not wanting to go out and declining social invitations—but with the help of her therapist, dietitian and prescription anxiety medication (taken as needed for stressful situations), she has been able to resume an active social life. “Most of the time I’m able to relax and enjoy myself and be present with my friends,” she says.
But for Marta,* a teacher from New York diagnosed with celiac disease four years ago, a bad glutening led to a major setback.
Following a mix-up at a restaurant—a gluten-containing dish was mixed with a regular dish—Marta refused to step inside a restaurant for over a year. Finding safe foods became a preoccupation, and, eventually, she limited herself to just five ‘safe’ foods.
Recent research has shed light on the burden of gluten-related anxiety. A 2018 study showed people with celiac disease who report the strictest dietary vigilance also report lower quality of life. Of the 50 adults and 30 teens in the study, 19 met study criteria for “extremely vigilant,” meaning they dined exclusively at celiac-friendly restaurants, asked thorough questions of staff when dining out, avoided all potential sources of cross contact at home, and carefully studied food, medication and supplement labels. Compared to their less vigilant counterparts, the adults who were extremely vigilant reported significantly lower quality of life, due to more limitations and worsened mood.
“We need to acknowledge that even though a gluten-free diet is essential for celiac disease, it comes at a cost, and for some that cost includes a decreased quality of life,” Lebwohl says.
Separate research, also published in 2018, linked anxiety with intestinal health in celiac disease. In this study, researchers in Sweden looked at anxiety and depression in people with celiac disease who were undergoing a second biopsy to check for healing of the intestine. Researchers found that those who healed were more likely to subsequently develop anxiety and depression. And in the reverse, people with anxiety and depression were more likely to heal.
Researchers have two explanations: First, those with the strictest dietary adherence might be at increased risk of anxiety because of all the precautions they feel they must take. Second, individuals with anxiety and depression may be more careful with the gluten-free diet and, therefore, more prone to heal.
One final study from 2018 suggests there may be important links between mental health, dietary adherence and celiac symptoms. This study showed that people without depression recognize a clearer link between poor dietary adherence and physical symptoms of celiac disease compared to people with depressive symptoms.
“It appears depression might cloud the relationship between avoiding gluten and physical symptoms,” explains Lebwohl, who was part of the research team on each of these three studies.
Further research is needed but results could one day suggest screening for depression in people experiencing recurrent celiac symptoms.
Help Is Available
If someone is struggling, they might start by looking for support from a close family member, friend, counselor or support group, Coburn says. The most important thing is to talk to someone who hears and understands your struggles, even if they can’t fix the problem, she adds.
“Celiac support groups can be wonderful to connect with people going through similar challenges,” she says, with the caveat that online communities can sometimes exacerbate anxiety. “Sometimes people end up feeding off one another’s worries.”
If anxiety is preventing you from having the life you want, seek professional treatment, Arigo says.
Treatments vary, but experts often recommend cognitive behavioral therapy (CBT). In CBT, people learn new and more effective ways to think and act.
“If someone is fearful of attention in a restaurant, we’ll rehearse a likely conversation you’d have in the restaurant in the privacy of the office,” Coburn says. “Eventually we’ll go in-person to a casual restaurant and ask one question but not order any food.” At the same time, relaxation strategies like deep breathing and visualization will be used to help manage anxiety.
“Over time, we build confidence and skills to self-advocate and navigate the restaurant experience,” she says. “The focus is teaching the body to calm down and to let go of tension while finding ways to think and act differently in those situations that scare a person the most.”
Medications can be used in conjunction with CBT. So can newer therapies, such as eye movement desensitization and reprocessing (EMDR)—a form of psychotherapy to help heal the symptoms of emotional distress.
“Don’t underestimate the importance of sleep, exercise and diet,” Burkhart emphasizes. “If you’re not sleeping well for any reason, anxiety will be worsened. Exercise can help with both anxiety and depression. When it comes to diet, many people find sugar and caffeine exacerbate anxiety.”
Lebwohl stresses the importance of working with an expert dietitian right away. “We know anxiety and depression can interfere with quality of life, as well as the process of adhering to a healthy diet that is free of gluten but not overly restrictive,” he says. “An expert dietitian can help patients achieve that balance of maintaining a safe gluten-free lifestyle that maximizes quality of life.”
Erin admits that for her, the dial is constantly moving—sometimes she’s more vigilant, other times less so. But when things feel too out of kilter, she leans on her dietitian, therapist and good friends. “I’ve learned I need to periodically check in with myself and ask—how am I coping?”
Getting Help for Celiac-Related Anxiety
Consult a mental health professional—psychotherapist, psychologist, licensed clinical social worker, counselor or psychiatrist—who is familiar with chronic illness, celiac disease or gastrointestinal health. Gastrointestinal centers are starting to embed therapists on site so you can talk to them at your doctor’s appointment, says Danielle Arigo, PhD. “This integrative model is the future of care.” Therapists can also be found in the searchable database on psychologytoday.com.
Consult a dietitian who is knowledgeable about gluten issues and celiac disease. To find an expert dietitian, visit Gluten Free Dietitian. In addition, visit the Academy of Nutrition and Dietetics’ database; select “gluten intolerance” in the search menu.
Contributor Christine Boyd, former health editor of Gluten Free & More, is a health policy analyst in Baltimore, Maryland.