A wide range of psychological problems can arise for those with untreated celiac disease. Initially, there may be a misdiagnosis of psychiatric illness due to some of the neurological and psychiatric symptoms that can be seen in untreated disease. Once diagnosed, there may be difficulty adjusting to both a diagnosis of chronic illness and the need for adherence to a gluten-free diet.
Knowing When to Refer for Mental Health or Medical Evaluation
When a Mental Health Referral Is Needed
A wide range of psychological problems can arise for patients with untreated celiac disease. These can include difficulties adjusting to a new diagnosis of chronic illness as well as dealing with adherence to a gluten-free diet and other aspects of disease management. Protracted duration of emotional or behavioral symptoms, greater severity of symptoms, and/or significant impairment in functioning are indicators of a potential need for mental health treatment. These include:
- Finding little or no pleasure in life
- Feeling worthless or extremely guilty
- Crying a lot for no particular reason
- Withdrawing from other people
- Experiencing severe anxiety, panic or fear
- Having big mood swings
- Experiencing a change in eating or sleeping patterns
- Having very low energy
- Losing interest in hobbies or pleasurable activities
- Having too much energy, having trouble concentrating or following through on plans
- Feeling easily irritated or angry
- Experiencing racing thoughts or agitation
- Hearing voices or seeing images that other people do not experience
- Believing that others are plotting against you
- Wanting to harm yourself or someone else
The following are three case examples of children and adolescents with diagnosed celiac disease who would benefit from mental health evaluation and treatment.
Daniel is a 14-year-old boy who was diagnosed with celiac disease at age 8. He had previously been adherent to a gluten-free diet, however, since starting ninth grade this year, his parents noticed that he had developed more abdominal pain, bloating, and diarrhea. After the continued presence of symptoms, his parents suggested that Daniel see his pediatrician for an evaluation, and he disclosed that he had been eating foods with gluten since beginning his new school. Daniel expressed feelings of anger and frustration that he had to follow a special diet and that he wanted to “be like everyone else”.
Liz is a 12-year-old girl with type 1 diabetes and celiac disease (diagnosed at ages 10 and 11, respectively). Liz has a history of Generalized Anxiety Disorder (GAD) and Attention-Deficit/Hyperactivity Disorder (ADHD), which had previously been well-managed on medication (escitalopram and methylphenidate).
However, in the last six weeks, her father noticed that Liz had been increasingly more anxious. Despite her health being stable, Liz complained of stomachaches and had difficulty going to school. Liz’s father noted that Liz was more hesitant to eat outside of the home and no longer wanted to spend time at friends’ homes due to concern about gluten exposure. Liz also had difficulty sleeping at night, was clingier towards her parents, and experienced an academic decline due to difficulties concentrating and missed school.
Samuel is a 5-year-old boy who was recently diagnosed with celiac disease. Samuel ’s mother requested a meeting with a psychologist for guidance on how to explain celiac disease and a gluten-free diet to Samuel. In particular, she was concerned that Samuel would not understand or comply with a gluten-free diet because he had never experienced overt symptoms related to celiac disease. Samuel ’s mother also wanted ideas on working with the school and how to talk with extended family about celiac disease.
When A Medical Evaluation Is Needed
Initially, those with celiac disease may be misdiagnosed with a psychiatric illness due to some of the neurological and psychiatric symptoms that can be seen in untreated disease including:
- Mood changes
- Difficulties with concentration and attention
- Sleep difficulties
- Decrease appetite
The following are three case examples of patients seen for mental health treatment, for whom a referral for evaluation of celiac disease is recommended.
Martha is a 12-year-old girl who comes for mental health treatment with a previous diagnosis of Generalized Anxiety Disorder (GAD) and “Chronic Shyness Syndrome” (which is not an official mental health disorder, per the DSM) by her primary care doctor. Martha presents with social shyness, chronic stomachaches, fear of vomiting and anxiety about being sick in front of others.
Gabriella is a 16-year-old female referred for psychiatric evaluation by her pediatrician due to concerns about depression. The initial medical assessment had not found any organic etiology for Gabriella’s recent increased fatigue, decreased appetite, and low mood. Parents are concerned that Gabriella is growing increasingly more socially isolated and struggling to attend school consistently.
Jason is an 8-year-old boy who presents for a first psychiatric evaluation for concerns about inattention, academic decline, and oppositional behavior. Parents report Jason’s grades have dropped during third grade, and he is experiencing more disciplinary problems at school (e.g., talking out of turn, not following directions, out of his seat). Parents described Jason has been eating less, partly because he is active and can’t sit still, but he also complains of stomachaches and feeling uncomfortably full after eating very little. Jason has never been a “great eater” and has always been small for his age.
Celiac Disease and Psychological Health Training Program
The Celiac Disease and Psychological Health Training Program was created by the Children’s National Health System in partnership with the Celiac Disease Foundation, and was made possible by a generous grant from the Resnick Family. This free, accredited continuing education program provides a toolkit for medical and mental health practitioners to identify and treat patients living with celiac disease.
Celiac Disease and Psychological Health Manual
The goal of this manual is to increase medical and mental health providers’ awareness of celiac disease in pediatric populations. However, it’s lessons apply to adult populations and is a useful tool for patients and caregivers to better understand the psychological impact of celiac disease.