Navigating the World with Food Allergies
By David Stukus, MD
As a pediatric allergist, I’ve had the opportunity to meet thousands of families living with food allergies. I love this part of my job as I have the chance to help these families establish a proper diagnosis as well as provide information to help them understand, communicate, and prepare for a life with food allergies. I also learn a ton from working with these wonderful families, which helps me better understand the multitude of situations that cause concern or result in accidental ingestion. I then get to ‘pay it forward’ by using this information as anticipatory guidance for other families, particularly those with a new food allergy diagnosis.
In addition to learning the different ways in which families manage food allergies, I also witness a wide variation in levels of anxiety that people experience. There are extremes at both ends, which always concerns me: some people have zero concern or even purposefully feed their child something which they are allergic to in an effort to ‘treat’ their allergies; others are engulfed in fear such that they won’t send their child to school or let them go to the park. Fortunately, the vast majority of families fall somewhere in the middle, with a healthy level of concern that ensures adequate avoidance measures and preparation for accidental ingestion. Most of them never experience another reaction after their food allergy diagnosis is established.
In our world of instant access to countless internet resources and social media groups, I believe it is more important than ever to rely on evidence-based information when making decisions about one’s health. This is the reason that I participate in social media: to help raise awareness and dispel common myths. I hear food allergy misconceptions every day, from not only families, but other physicians as well. I’ve also encountered many concerning websites and social media posts that provide inaccurate and potentially dangerous information. As parents, we strive to make the best decisions for our families based upon the best available information.
Unfortunately, not all food allergy families are savvy enough to spot and ignore scary anecdotes or snake oil salesmen. It is important for anyone with food allergies to understand which measures are important to avoid accidental ingestion, as well as know how to recognize and treat an allergic reaction should one occur. It also helps to understand risks of reaction from various exposures, as well as unlikely sources of exposure.
One example of poor understanding of risk and greater context is in regards to scary stories from individuals who report anaphylaxis from “smelling” peanut butter. While this is theoretically possible in a severely allergic individual, it is also EXTREMELY unlikely. Even if this legitimately occurred to a few select individuals, the vast majority of people with peanut allergy will have no problems at all with this type of exposure. Therefore, to implement widespread precautions given this extremely low level of risk would not only have no effect in reducing a risk that didn’t exist in the first place, but it may distract from other precautions that are much more likely to be beneficial.
Yes, if you have food allergies, then every meal or snack represents the potential for accidental ingestion. Yes, if your child has food allergies, then you are trusting others to ensure their safety. Yes, this can easily raise anxiety for even the most well-adjusted and well-informed people. However, with proper guidance, LOTS of practice, and experience, that anxiety can hopefully be reduced. We can only control what we can control. We can control reading labels from every packaged product (even if eaten before). We can control how and when we communicate with food handlers, teachers, schools, family members, and caregivers. We can control immediate access to epinephrine autoinjectors in case of accidental ingestion. And lastly, we can control what activities we decide to partake in, such as going to baseball games or playgrounds.
Hopefully, families with food allergies have received clear information from their allergist or primary care physician. With every family I meet, I strive to educate about food allergy diagnosis, testing, natural history/prognosis, risks of reaction through various exposures, important methods of communication for schools and caregivers, signs/symptoms of an allergic reaction, and treatment of an allergic reaction, including practice with an epinephrine autoinjector training device. And that’s just at the initial visit! At every follow up visit, I ask questions regarding any accidental ingestion, challenges in communication/management within the school or with caregivers/family members, and also provide anticipatory guidance for the upcoming months such as starting a new school, summer camp, or travel. Most importantly, I expect and welcome questions. I also realize that concerns arise in between visits, so I offer my email address and direct office line for families who are interested.
There are reputable resources available for families who have not received this information from their physician or who have additional questions. FARE, AAFA (formerly Kids with Food Allergies), Asthma and Allergy Network, Allergic Living, and both the American College and Academy of Allergy, Asthma, and Immunology are some examples of sources of evidence based information and advice. I recommend caution for any sites or blogs that do not utilize a medical advisory team, which is important to ensure the proper interpretation and message is being distributed, particularly when discussing the latest research findings.
Lastly, I believe that anyone with food allergies can live a happy, productive life, as long as they understand their diagnosis and establish consistent measures to minimize risk of exposure. Preparation with immediate access to an epinephrine autoinjector at all times is paramount as well since accidents can occur, despite our best efforts. I’ve learned from my own patients that this type of life is not only possible, but should be expected.