The takeaway:
Over a third of adolescents with celiac disease may face anxiety and depression. Integrating behavioral health and peer connection into a treatment plan for celiac disease can be a boon to patients and families.
The road to a celiac diagnosis can be fraught with uncertain symptoms prior to an official diagnosis. This journey, and the subsequent change in lifestyle, can have a profound impact on the mental health of adolescents and teenagers.
That’s where Monique Germone, PhD, associate professor of psychiatry and pediatrics at the CU Anschutz School of Medicine and a pediatric psychologist at Children’s Hospital Colorado, steps in. She provides care and researches the impact of celiac disease on kids and their families.
“I’ve supported a family member with gluten sensitivity, so I’m familiar with the trials and tribulations of navigating this disease,” Germone said. “My goal is ensuring that celiac patients and their families meet with a behavioral health provider as part of their care team, because even if a child is not experiencing severe anxiety or depression, a behavioral health provider can help to screen for developmental, educational, and behavioral concerns to provide quick access to resources and support.”
Below, Germone offers insights and the latest research findings on helping kids navigate celiac disease.
Germone was part of a study led by Marisa Stahl, MD that showed there is a negative impact on quality of life in the United States for kids with celiac disease which improved following diagnosis and starting a gluten-free diet. “We define that as a fancy category term that talks about how a person or a child is doing physically, socially, emotionally and at school. So, across all domains of life, how are they doing? And we ask them to rate this in relation to their medical condition.”
The two main areas with the most concerning impact identified in the study were emotional functioning, which leads into mental health, and performance at school, she said. “Celiac disease can make school very difficult for kids.”
Deeper dive:
CU Anschutz researchers have also investigated the impacts on familial relations with celiac disease, alongside other quality of life concerns, anxiety and depression.
“In 2014, we started to look at integrating kids and kids' mental health more, and it has really grown over the last decade,” Germone said. Prior to this, a lot of the work was done in adults and older adults. We now have some really great systematic reviews that have shown the impact on mental health, especially in the areas of anxiety and depression.”
“We did a study that was published in 2022 that looked at hundreds of kids that had been seen and given a standardized screener for anxiety and depression symptoms,” Germone said. “About a third of those kids had clinically significant concerns for their anxiety and depression symptoms. This was regardless of how long they had been on a gluten-free diet or if they had other medical conditions. This meant those children should definitely go see a provider for further diagnosis, and it spurred us to do more work to help these kids.”
“39% of kids self-reported these concerns, but only 7 to 14% of their caregivers reported these concerns. This means that kids were experiencing significant anxiety and depression symptoms and their caregivers didn't notice it."
“In our quality-of-life survey, we also looked at the impact of celiac disease on social functioning. It isn’t actually taking a hit in most kids. They're not necessarily getting teased by friends. They feel that they can make friends,” Germone said.
“Where we do see an impact is the need to plan ahead, and this especially impacts caregivers,” she said, referring to what kids will eat and how they will avoid gluten exposures. “It also requires our teenagers and adolescents to grow up quickly because as you start to learn how to go out with your friends, now you have to learn how to plan right alongside of it,” she said.
“Think of a birthday party or other events where food is involved. You may not be able to eat some of the food and might be breaking social norms by asking what’s in the food, how it was prepared. There is a stigma around celiac disease, as it is often viewed as a choice – due to (gluten-free) health trends and fads – and not a real condition.”
“Gluten is hidden and sneaky. You can’t see it. You can’t smell it. We can test for it in a lab, but that’s not available to a family going through a journey toward diagnosis and treatment,” Germone said. “You end up spending a lot of mental energy to try to figure that out. You ask questions at restaurants, including how food is made in the kitchen (e.g., “ was this fried in a fryer with things that have gluten?”), and you closely inspect food labels.”
All that planning ahead can be taxing, creating a stressful hypervigilance to stay safe, she said.
“But we, especially as a medical community, want to be very mindful of how we're actually informing families about this, and we want to try to avoid creating hypervigilance, which is the extreme end.”
What does extreme hypervigilance look like? “You're so worried about gluten being in your food that you're avoiding everything in your life. You're not going out with friends. You're not going to family gatherings. You're avoiding all of these things where food could be. Your world shrinks.”
Germone and colleagues can help with that aspect. “We are also continuing to evolve the way that we teach about the gluten-free diet to really help make sure people can eat as many things as possible and interact with the world in as many ways as possible.
For help with your child's celiac disease diagnosis, visit the Colorado Center for Celiac Disease at Children's Hospital Colorado.
Mental health experts with training in supporting patients with medical conditions often use a biopsychosocial model to help better understand the medical condition, including how physical health and biological and physical features interact with multiple aspects of a human's life and personhood, Germone said. “This includes their approach to life, support structures and how they internally think and feel. This would also include our food systems, laws and regulations, especially as we talk about celiac disease. How all those interplay then results in a person’s ability to understand their condition and adhere to the treatment.”
A biopsychosocial model is adaptable for different cultures and families because it encourages curiosity, investigation and employing the family as the experts on their own family to understand how best to combine medical and historic tips, she said. “We can bring all of this expertise together to ultimately help provide that individualized and informed approach for the family.”
The right tactic is prescribing a gluten-free diet and supporting them in adhering to that treatment, Germone said. “The gluten-free diet presents challenges in every aspect of our patient's lives. It's hard to prioritize potential complications of not adhering to the diet when it may be so challenging to stick to the treatment in the short term. This is why biopsychosocial approach with behavioral health support is crucial to celiac disease care."
Studies from across the globe have shown that peer-to-peer networks have benefits for kids with celiac disease. “Specifically, a summer camp style environment where kids can be among peers and without dietary worries,” Germone said. “It’s great for them to be in a camp where you don't have to think about your food, because they provide safe, gluten-free food.”
In Colorado, one such camp Germone and her colleagues refer patients to is the Round Up River Ranch, which supports kids with life-altering diagnoses. Camps also enhance young people’s social networks. “And, especially with mental health, we know the importance of social connection and social support,” Germone said.
A special thanks to Marisa Stahl, MD, Sadie Nagle, MS, RD, LD and Edwin Liu, MD for their contributions to this story.
Key points:
A study showed that 39% of children and teenagers with celiac disease – ages 8 to 17 – reported having significant anxiety and depression symptoms.
The biopsychosocial model, where a patient’s entire lived experience is integrated into their care, is an effective approach to meet the challenges of anxiety and depression celiac patients can face.