Mobile menu

Children with celiac disease at greater risk for mental health issues

June 11, 2020

More attention to psychological and psychosocial symptoms in children needed, new study finds

By Amy Ratner, Medical and Science News Analyst

About one-third of children with celiac disease have mental health disorders, primarily anxiety disorder and attention-deficit/hyperactivity disorder (ADHD), according to new study thought to be the first to investigate mental health in children from North America.

These issues contribute to increased psychosocial distress in both parents and children, the study by researchers from Children’s National Hospital found.

Psychosocial: the mental, emotional, social, and spiritual effects of a disease that impact how someone thinks, feels, copes and relates to others.

The study, published in the Journal of Pediatric Gastroenterology Nutrition, concludes it is important to routinely screen for and treat psychological disorders and related psychosocial difficulties in children and adolescents with celiac disease.

“The significant psychological and psychosocial impact of celiac disease in children and adolescents has gone unrecognized for too long. This lack of recognition can leave children on their own to deal with anxiety, anger, depression, ADHD and more,” said Salvo Alesci, MD, Beyond Celiac chief scientist and strategy officer. “As this study suggests, mental health should be routinely assessed and monitored in children with celiac disease to provide help that can make a big difference in their lives and the lives of their families. Overall, we need to pay more attention to extraintestinal symptoms of celiac disease.”

Rate higher than general population

Thirty four percent of children in the study had at least one mental disorder compared to 13 percent of children in the general population. Of eight mental health disorders, the most frequently reported diagnoses were anxiety and ADHD, both at 16 percent, rates also higher than in the general population.

Physiological: biology that deals with an organism’s healthy or normal functioning.

It is not clear whether mental health disorders in children stem from some physical change caused by celiac disease in addition to the stresses that can be created by the need to follow the gluten-free diet.

“Mental health disorders and psychosocial distress may occur in celiac disease because of physiological vulnerabilities and physical symptoms, as well as social and lifestyle impacts of the gluten-free diet in both children and caregivers,” study authors wrote.

The study also poses the question of whether there may be an as yet undiscovered physiological reason or predisposition for psychological symptoms regardless of whether celiac disease is well controlled.

“Our study did not try to answer the very important question of what might be causing the mental disorders we are seeing,” said Shayna Coburn, PhD, lead study author. “My hunch is that there are a few things going on.” One possibility is that some of the same genes that cause celiac disease might cause mental health disorders, as well as physical changes in the central nervous system related to things like inflammation and gut damage as a result of gluten exposure prior to diagnosis, plus the natural stress that results from the gluten-free diet and physical symptoms when exposed to gluten,” she suggested.

Read more: Brain imaging in adult celiac disease

“However, a limitation of many studies looking at potential causes, like structural changes in the brain, tend to look at patients with celiac disease across a wide span of time in relation to how long they have been on a gluten-free diet,” Coburn explained.  “This can cloud our ability to draw clear conclusions. People who have untreated celiac disease are likely to be a lot sicker than people who have been gluten-free for years, and it’s going to be important for research to try to clarify what effect there may be from exposure to gluten in people with celiac disease, compared to other possible causes, like the challenges of the treatment itself.”

Counseling needed

About one quarter of all the children in the study had received counseling and/or psychotherapy. Among those who had a diagnosed mental health disorder, the number who had received treatment was about 50 percent.

“A large portion of children [with celiac disease] with mental health disorders never received psychotherapy,” study authors wrote, noting that this is also true of generally in children with mental health disorders.

Meanwhile, more than 25 percent of parents said that their child experienced recent psychosocial stress.

No differences in mental health disorder rates or stress were found when newly diagnosed children were compared to those who had an established diagnosis, the study says.

“Consistency in ratings between families with new versus established diagnoses suggest that management of celiac disease does not get easier, even years after diagnosis,” the study says.

Additionally, researchers did not find any demographic factors such as a child’s age, sex and other medical conditions, that might increase the risk for mental health issues and merit targeted screening.

How the study was done

Seventy three parents of children with celiac disease under the age of 18 being seen at the celiac disease clinic at Children’s National over the course of one year completed electronic surveys about their child’s mental health history, psychological symptoms and gluten-free diet experiences. The parents also provided information about their own and their child’s psychosocial distress, including general stress and celiac disease specific stress, for a week leading up to their clinic visit.

They rated psychological symptoms, including anxiety, depression, anger and overall distress. Questions related to the gluten-free diet covered how long and how well their child had been following it, how confident the parent was in their knowledge of the diet and how much of a financial burden it presents.

Most of the parents who participated in the study were mothers and more than half of the children were girls. Of those who reported race, 56 were Caucasian and four were African American. One third of the children were newly diagnosed and the rest had been on the gluten-free diet at least three months.

“This study highlights the critical need for celiac disease management to not only focus on gluten-free diet adherence, but social and emotional health as well,” said Randi Wolf, PhD, associate professor of human nutrition at Columbia University Department of Health and Behavior Studies.

Wolf, who was not involved in the study, noted that it and others like it stress the importance of ongoing follow-up with a gastroenterologist and a dietitian specialized in celiac disease, as well as the possibility of regular psychological screening of children and their parents to catch and treat mental health issues early on.

“Our ultimate goal needs to be to ensure children with celiac disease grow up healthy and happy,” Wolf said.

Distress in children

When current distress was measured, anger was the most common symptom parents reported, at nearly 40 percent, followed by anxiety at 33 percent and depression and overall distress at nearly 30 percent each. Additionally, 20 percent of parents said their child was experiencing stress not related to celiac disease, for example a move, a change in schools or the death of a grandparent, at the time of the clinic visit when stress was being measured.

Parental distress

Although parents of newly diagnosed children had lower levels of confidence, overall parents reported that they were fairly secure in their knowledge of the gluten-free diet. They nearly uniformly thought their children followed the gluten-free diet well. However, about half of parents said they felt increased stress, and nearly half said they felt a financial burden related to the gluten-free diet.

The study did not look at long-term adherence to the gluten-free diet and health outcomes, but authors note that mental health disorders appear to contribute to parents’ difficulty coping with the challenges of a gluten-free diet. “Future work should test whether mental health disorder is associated with poorer gluten-free diet adherence in children with celiac disease and whether treatment improves these outcomes.

What parents need to know

“This study tells us that mental health challenges are common among children with celiac disease and their families. Often times, families need some additional support to help them cope with celiac disease and the gluten-free diet,” said Coburn. “If you’re having a hard time, you’re not alone, but you don’t need to go through this alone either.”

If your child is spending a lot of time worrying, having intense emotional outbursts, or begins avoiding things that he or she usually enjoys despite making accommodations for celiac disease, your child might be having some trouble coping, Coburn said, noting that the challenges may or may not be directly related to the gluten-free diet. If these symptoms are happening more often or more intensely than other kids their age, your child might benefit from a little extra support, she advises parents.

Coburn and colleagues recommend a brief psychological screening because, she said, it is so common that children or their parents might have distress that goes unnoticed. The researchers are advocating to have mental health professionals be more connected to medical practice groups. “More and more medical centers are giving families brief questionnaires to help them identify children and families who are struggling and connecting them to services when needed,” Coburn said. “This helps to prevent more severe mental disorders later in life.”

However, researchers do not necessarily recommend a full psychological evaluation, which can be time-consuming and costly, unless a family has specific concerns for their child’s mental health. “Our goal is for celiac treatment to eventually be able to give families access to support that is tailored to their personal needs and covered by their health insurance, but this is still very much a work in progress,” Coburn said.

The new study follows 2019 research by the same investigators that concluded psychological services available through a multidisciplinary clinic can offer significant support to families and medical providers, regardless of the time that may have elapsed since a child’s celiac disease diagnosis.

You can read more about the study here.



Think you may have celiac disease?

Symptoms Checklist