This is a common prescription for celiac disease: anxiety. Worry about every meal, every bite you take. If you happen to eat some gluten either accidentally or deliberately, it causes intestinal damage, increasing the risk for certain kinds of cancer, bone fractures and other complications.
While a gluten-free diet is the only treatment for celiac, hypervigilance can lead to mental illness.
A study from Harvard University and Columbia University recently reported people with celiac are more likely to recover from intestinal damage if they have a mood disorder. The scientific paper states prosaically, “Prior psychiatric disease was associated with mucosal healing.”
The pattern was especially strong for people who developed anxiety after being diagnosed with celiac. However, people with a prior mood disorder were also more likely to score a passing grade on their follow-up biopsy. Patients who let troubles roll off them were less likely to achieve intestinal healing. The findings came from health records of 7,648 Swedish patients collected over 40 years.
The Unseen Toll
“We see healing as a good thing. Healing is a reflection of strict adherence to the gluten-free diet,” says Benjamin Lebwohl, MD, assistant professor of medicine at Columbia University Medical Center in New York, who worked on the study. “It does appear that the treatment of celiac disease, the gluten-free diet, can exact a toll on the patients. Even if the patients are physically better off, some patients may suffer with regard to depression and anxiety.”
The impact on long-term mental health is also sobering. The study reports celiac patients who achieve complete healing of the small intestine face an almost 50 percent greater risk for future anxiety disorder and a 25 percent greater risk for depression.
“Patients who have celiac disease but have untreated depression are still patients who are suffering,” Lebwohl says. “Sometimes the presence of untreated depression can prevent a patient’s intestinal-related symptoms from improving. It comes up clinically even if a patient is strictly avoiding gluten. If they have an untreated mental illness, they will not feel better physically.”
Researchers hesitate when asked whether mood disorders are more prevalent in celiac patients than the general population.
A 2017 study of 22,000 people in the National Health and Nutrition Examination Survey found celiac patients had no increased odds for depression or sleep disorders.
Marilyn Geller, chief executive officer for the Celiac Disease Foundation (CDF) in Woodland Hills, California, points to gluten exposure itself as a frequent cause of distress: “There is a significant percentage of people with celiac disease or non-celiac gluten sensitivity (NCGS) who report anxiety, depression and brain fog from consuming gluten.”
It is often reported by patients in CDF’s online registry of 5,000, but the voluntary nature of the database prevents statistical interpretation. Geller says the percentage is significant enough that the patient advocacy group partnered with Children’s National Health System (CNHS), a children’s hospital in Washington, D.C., to develop continuing education in mental health support for celiac care providers.
Celiac and Child Psychology
In 2017, CNHS created a full-time psychologist position in its celiac program. Shayna Coburn, PhD, works directly with patients while developing a psychosocial health program to incorporate research and community outreach.
Coburn says she learned the challenges firsthand after being diagnosed with celiac while a graduate student in psychology in 2010.
“I was already interested in health psychology in children and suddenly had to face it myself,” says Coburn. “I started to notice there’s a lot of stress associated with coping with any chronic illness, especially with the challenges of the gluten-free diet. I didn’t find any resources out there. I had a lot of trouble even finding people who felt comfortable talking about the mental health struggles that come up.”
With the CNHS database in its first year, it cannot yet provide figures on how mood changes in patients over time. However, the initial baseline tells us something: “Thirty-four percent of families who come in report an existing mental health diagnosis in their child before they even walk through the doors,” says Coburn.
Anxiety disorders appear in 16 percent and attention deficit hyperactivity disorder (ADHD) also appears in 16 percent of children up to age 12 in the CNHS celiac program.
“We see large proportions of families reporting anger and overall distress in their children on an ongoing basis. That could be indicative of depression, but it is harder to diagnose that in kids. Irritability is a hallmark of depression in kids,” says Coburn.
In addition to those with a previously diagnosed psychological disorder, Coburn says she sees unrecognized cases of children who meet criteria for mental health problems. She believes 34 percent is a conservative estimate of their prevalence in children with celiac.
Parents sometimes ask if a diagnosis of anxiety disorder or ADHD could be caused by celiac itself: “We don’t fully know the answer. I usually tell them that we know there’s a link, but we don’t know if it’s going to get better. For some people it does, for some people it doesn’t, for some people it gets worse,” says Coburn, adding that CNHS’s research aims to understand the risk factors better.
Clues From Quality of Life
While not specifically a measure of mental health, quality of life has often been studied to assess the burden of chronic diseases. The questionnaire specific for celiac patients addresses problems such as social and travel barriers. In particular, patients are asked whether they feel depressed, frightened or overwhelmed by celiac.
A separate study by Columbia University in 2017 found celiac patients who were hypervigilant about their diet scored lower on quality of life. The hypervigilant group knew how to read food labels better. They cooked at home and used internet apps and sites to help stay gluten free. They chose celiac-friendly restaurants and asked questions of their servers—all things they are supposed to do.
“Eating out was particularly problematic,” the study reports.
Scoring lower on quality of life pushed hypervigilant patients into a worse category of self-rated health, stress, pain and ability to cope. The study included 50 adults and 30 teenagers enrolled at the Celiac Disease Center of Columbia University, New York. Psychological patterns were similar for both age groups.
The study notes a contrast with earlier research on quality of life in European celiac patients. However, in Europe, the gluten-free diet is more widely understood as a medical necessity for people with celiac. In North America, the gluten-free trend can lead to trivialization by food services. Some restaurants that brand themselves gluten free may not take adequate precautions. This makes celiac patients work harder to ensure their food is safe.
Both studies of hypervigilance suggest a gluten-free diet is achievable and promotes complete healing of celiac damage in the gut. However, it can restrict lifestyle and impose significant distress on many patients.
Beating Social Isolation
“It’s common that people feel socially isolated because of the combination of factors that go into trying to keep a strict gluten-free diet,” says Coburn. “In addition, when somebody experiences anxiety about potential exposure or about embarrassing or uncomfortable physical symptoms, they will cope by withdrawing from the feared situation. Social situations are scary at first. They’re overwhelming. People can accidentally reinforce avoidance and strengthen their anxiety by doing what they think keeps them safe and healthy. It’s a tough balancing act because they need to be vigilant, but it might become hypervigilant.”
For example, when attending an event where the food might not be safe, a patient can choose not to eat it. That is a reasonable coping strategy.
However, avoiding contact with friends or family out of fear of being pressured to eat something causes unreasonable social isolation.
“Shrinking into your world and only doing what you know to be safe can become a terrible feedback loop of feeling low, unmotivated and losing enjoyment in things. That makes it even harder to advocate for yourself and change the situation,” says Coburn.
A Holistic View
Lebwohl puts responsibility on doctors to become more aware of the interplay between physical and mental health, especially in celiac.
“In today’s climate, often we focus on the diagnosis at hand. We tend not to take a holistic view of the patient. If a gastroenterologist is taking care of the patient, he or she may be more likely to focus on intestinal symptoms, not impact on quality of life and mood. Because the treatment of celiac disease is a diet, too often patients report they were told by a practitioner to, ‘Google the diet, and you’ll be fine.’ This is really not enough,” says Lebwohl.
“Some patients will be very forward with regard to their psychic state and their physical state, whereas other patients may be less likely to see a connection or to raise it,” he adds. “For some, it’s not much of an issue. For others, it can really impact quality of life. For still others, there may be undiagnosed or untreated mental illness that impacts their ability to thrive.”
A holistic approach takes into account not only intricacies of the diet but also emotional challenges likely to come up, he says.
These include social challenges, impact on family life, the burden on a patient’s partner and how the diet affects work and travel. For new patients, Lebwohl says, “There’s no substitute for a session with an expert dietitian competent in the intricacies of a gluten-free diet. That competence speaks not only to what foods must be avoided but also knowing what measures might not be necessary and how to navigate a successful gluten-free diet that does not require social isolation and over-restriction.”
Van Waffle is a freelance journalist based in Waterloo, Canada, and research editor for Gluten-Free Living. He blogs at vanwaffle.com.
7 HEALTHY WAYS TO COPE
Shayna Coburn, MD, offers coping strategies for living with celiac disease and a gluten-free diet.
- Know what you want your life to look like. Identify your goals and move toward them gradually. Take your time. If you feel anxious about something you want to do, try not to do it all at once but break it down into baby steps. Keep your priorities in mind to balance being vigilant with having good quality of life.
- Think about how to advocate for yourself. Decide how you want to communicate with other people. How much information do you want to disclose? Create a script to explain your needs. Practice it.
- You do not have to tell everybody. Usually people will not even notice you avoid gluten. You can find out what you need to know from party hosts and restaurant managers without drawing attention to yourself.
- Parents are sometimes not careful about what they share because they are trying to advocate for their child. Some kids will not mind, but others just want to fit in and do not want people knowing all the details. Coburn encourages families to discuss what needs to be said for safety and what is optional.
- Reach out to people in the celiac community. Connect with people who reassure you that you are not alone.
- Fact check everything you hear about gluten safety, especially from online support groups, because misinformation can cause unnecessary anxiety. The best source is a dietitian knowledgeable about celiac.
- Parents of children with celiac are prone to feeling stressed and overwhelmed, too. They need to reach out for their own support.