Psychological issues are a major problem for people with food allergies, yet can be overlooked by physicians. Food phobias, severe anxiety and post-traumatic stress following an anaphylactic reaction – I have witnessed all of these during my 30-plus years as an allergist.
From a young woman whose fear prevents her from undergoing an oral food challenge for peanut despite negative diagnostic tests, to a child who is nauseated just thinking about eating eggs even after a successful food challenge, I have seen a number of individuals consumed by the fear of food allergy to the point that they need psychological services.
The reality is that living with food allergies involves much more than being prepared in case of an anaphylactic emergency. For many families, managing food allergies leads to a diminished quality of life due to the stress that accompanies a life of constant vigilance.
Research shows that children and parents managing food allergies report elevated anxiety, distress over social limitations, food allergy-related bullying, fear of oral food challenges and more. Quality of life tends to be worse if a family is managing multiple food allergies, or if the allergen is difficult to avoid. In cases in which a child has experienced anaphylaxis, fears can intensify and even become debilitating.
From Emotion to Anxiety
In late 2016, the National Academies of Science, Engineering and Medicine issued its comprehensive report on food allergy. On the topic of quality of life and mental health considerations, the authors affirmed that the emotional concerns of daily management of food allergies can result in distress. This is indisputable, and I’m glad that the report addressed the issue. The National Academies’ expert committee also referenced a study that found having a food allergy is associated with more symptoms of separation and generalized anxiety, attention deficit and hyperactivity disorder and anorexia.
The reasons the psychosocial aspects of food allergies do not receive adequate medical attention are varied. To start with, there are very few therapists in the U.S. who have studied and understand food allergy; at FARE, we are aware of only about a half-dozen food allergy centers in the U.S. that have a therapist working at least part-time.
It is possible that a psychologist not affiliated with a food allergy center can work successfully with patients with food allergies. However, there is no question that someone with a keen understanding of the hardships that an individual with food allergy faces is usually better equipped. The fact is that the mental health resources available to most food- allergic individuals are totally inadequate.
Currently, the national clinical guidelines for the diagnosis and management of food allergies recommend that health-care providers give patients information on avoidance and emergency management “because management can have substantial daily consequences, including anxiety and diminished quality of life.” This statement alone, however, is not adequate to educate our providers. How can we in the medical community address this problem?
I believe that clinical guidelines related to the psychosocial impact of food allergy for use by psychologists are much needed. Developing such evidence based guidelines has positively impacted patients with asthma, another allergy-related disease. Before such protocols can be developed for food allergy, we need more information and research to formulate a consensus on how best to identify these issues, prevent them and treat them.
Patients with food allergies are much better served through a team approach that provides for the services of a psychologist and a dietitian in addition to the allergist. We are fortunate that trailblazing work in this area is underway in our nation’s capital.
Children’s National Hospital psychologist Linda Herbert works directly in the food allergy clinic there and she leads a food allergy interest group within the Society of Pediatric Psychology (a division within the American Psychological Association) that is helping bring forward the issues that food-allergic patients face. She will also be leading a symposium at the APA conference soon on therapeutic approaches for youth with food allergies and their families.
Better Resources Needed
At FARE, we know that our community is in need of more resources to cope with the emotional impact of food allergy. That is why we have several educational webinars led by psychologists available on our website, and why we routinely invite them to present at our conferences. Our packet for newly diagnosed patients is being revised with these needs in mind, and we ensured the issue was addressed at FARE’s Research Retreat in 2017.
Clearly, mental well-being is an important issue for all. I hope that moving forward, we can help to provide psychologists with better resources for the care of patients with severe anxiety, disordered eating and other issues.
Anyone who has endured a frightening anaphylactic reaction deserves better than to begin to fear every bite of food. The least we can do is address their psychological issues.
Dr. Jim Baker is the former CEO of Food Allergy Research & Education (FARE). For more information, visit Foodallergy.org.