What Makes Food Allergy Anxiety Different?
(This episode of the Don’t Feed the Fear podcast was originally published 6/30/24.)
What makes anxiety about food allergies different? After my family's own experiences and working with so many families in my private practice, things continued to click into place over time to help me realize more and more why anxiety about food allergies is so intense and pervasive. Why the approaches that we typically use in therapy to address anxiety often don't work for these kids and these parents or if they do they work a little bit like a band aid. They might solve one little problem one scenario at school or a situation coming up at a birthday party, but they don't relieve the anxiety overall. So I am diving right into the heart of it here as I start my podcast and I'm going to explain to you what I have found seems to be the reason that food allergies are so different when it comes to anxiety.
Welcome to the first episode of the Don't Feed the Fear podcast. This summer I'm going to be focusing on understanding food allergy anxiety and trauma and today's episode will focus on the very heart of that, at least from my experience and my private practice as a therapist working with kids and families with food allergies.
Trigger Warning
For those who have experiences with food allergies and allergic reactions, what we talk about today might be upsetting for you. Know where you're at in your own journey in terms of whether discussing the danger of what's happening and then the physical sensations that go along with it is a little bit too much for you right now. I would encourage you to pause at any time if it feels like too much. I do want to get the information out there, but I also want to acknowledge that for those who've experienced a trauma, listening to someone talk about it can be very upsetting.
That said, it's also important to know and understand, and sometimes the knowledge can feel like the control we need to have our experiences validated to know that there's not something wrong with us. This is actually a reaction, not just physically, but emotionally, that makes sense given what we've experienced.
What Is Anxiety?
I'm diving right in because I want to give you what I believe is the most important piece of information that you can have about food allergy anxiety. This is something that I teach all of the clients that I work with in my private practice. This is something that I'll explain later is well documented, and I don't understand why it's not more of a widespread approach.
Most people can relate to the idea of feeling scared or anxious about something. So whenever I talk about food allergy anxiety, I like to start here. Everybody can picture something that they're afraid of. Most people have something that they're really afraid of. I often ask people and of course they say things like spiders and snakes, or heights. One of the most common ones that works really well as an analogy is airplanes.
If any of us pick that thing we're afraid of, the thing we're really afraid of, and imagine ourselves doing that thing, being near that thing, experiencing the very thing we're afraid of… If we really stare down the fear, the first thing we'll realize is that it isn't just the thing itself that we're afraid of.
We are afraid of the bad thing that will happen, at least in our imaginations, because of what we say we're scared of. For example, we say, “I'm terrified to fly.” We're not really afraid of flying. We're afraid of crashing and dying, right? If we want to remove ourselves from food allergies a little bit to help us understand, let's imagine this bad thing:
Anxiety is Physiological
Let's imagine ourselves on the plane. Then there's some awful turbulence. And then the buckle your seatbelt alert goes off. You can see fear in the eyes of the flight attendants as they rush around the cabin and buckle in, too. You see smoke out the window. You start to feel yourself dropping through the sky. As you imagine that bad thing happening, notice what happens in your body.
If we truly picture our worst fear coming true, we will feel our bodies shift. In fact, our body and our brain don't really know the difference between imagining something and it actually happening. So those very real physiological changes that happen in a truly dangerous situation, also happen when we picture it in our minds.
Everyone is familiar with them, even though some people would have a hard time articulating them. Your heart beats faster. Your breathing becomes quick and shallow. You get sweaty and warm. Just imagining it is enough to shift what's called your autonomic nervous system into fight or flight mode.
It's okay if you don't know or remember that phrase, autonomic nervous system. Just replace it in your head with “automatic.” It's the things that your nervous system does without you intentionally trying.
Many people are familiar with that phrase, fight or flight. More accurately we should call it fight, flight, or freeze mode, which you'll learn more about later. The vagus nerve, which is a giant nerve branching around our skulls, our eyes, down through the ears, and into the torso, connecting to our major organs, controls this protective mechanism. It senses danger coming in through this body's five senses and prepares us for an emergency. It prepares us to either fight back against the danger or run to safety, which we refer to as flight.
When the vagus nerve picks up on any sensory information that it deems dangerous, that cascade begins to immediately happen within the body. Our breath picks up speed to take in more oxygen. The heart pumps faster to deliver the oxygen to the muscles, along with the adrenaline that immediately courses all through our bodies.
The muscles are tense and ready for action. They're ready to fight back against the danger or be quick to react to run away and get us safe. Our eyes will quickly scan the environment back and forth, looking for any information that will help us. Our ears block out middle frequency sounds in order to hear the low tones of threats (thunder rumbling in the distance and animal growling, an earthquake), and also the high tones that indicate danger (someone screaming, tires screeching, a siren, a baby wailing).
In addition to turning some of these things on, one of the important things that a lot of people don't know is that the body also turns off or puts on hold everything that we don't need at that moment, everything that is not essential to save us from this perceived danger. Two of the most important things are our digestion and our rational problem solving and language skills. In fight or flight mode, blood flow to the areas of the brain that control higher order thinking is literally restricted by the blood vessels contracting. This is, of course, not the time to sit down and carefully logic out our response. We're not going to rationalize, “What's the best course of action here? What do I recall about what to do if I'm in a plane crash?” It's fair to say that this vagus nerve response in the body can literally hijack our entire system. Thinking about it in this way is my favorite way to demonstrate to us fear is not in our brains. It does not live in our thoughts.
Fight/Flight
I want to emphasize again before we move on, those two primary reactions that people tend to have when their body goes into this mode, fight or flight. Our nervous system's top priority is to keep us safe, so we'll avoid danger if it's at all possible. We will get away to safety if we can, but if we perceive that that's not possible (even if it's not true) we will fight back.
In the case of anxiety, we will use those same reactions: fight or flight, or what looks on the outside like control, fighting back, taking action against this perceived danger, or avoiding, getting away from it, not thinking about it, refusing to talk about it. Those are the two primary reactions that we can have to managing the fear.
Now imagine, not just that you're afraid of planes and of flying, but if you had actually been on a plane and it had crashed. What would it take to get you to fly again? If you have actually experienced that terrifying thing, feeling scared, feeling a little nervous or anxious is really just the tip of the iceberg of what we're dealing here with scared is one thing, but if that had actually happened to you, if you had been on a plane that crashed and somehow you were lucky enough to survive.
Now, imagine what the thought of getting on a plane would feel like to you. If someone offered you a free trip to Hawaii, you would probably be terrified and many people would refuse to go given a past experience like this. That gives us an example of how someone can have such a different response to something that other people might not understand at all.
Most of us would be elated and we probably wouldn't understand why someone would have a very strong fear reaction and avoidance, a terrified response to being offered what we think is wonderful. The difference here is that if you have experienced that scary thing happening, or if you were in a scenario where you truly believed that it was happening, that can cross over from what we call fear or feeling scared into trauma.
After a Trauma
How does this relate to food allergies? Kids and adults who have food allergies have actually had the scary thing happen. To use our metaphor, they've been on the plane and it crashed. Maybe not quite so dramatically, but in other cases, definitely that dramatically. It's scary when people have an allergic reaction. They can be deadly, and most people who experienced or witnessed it can recognize that the person was truly in danger and that what happened in the body was life threatening response.
Of the people who have experienced an allergic reaction, the lucky ones had maybe a mild reaction. The unlucky ones have experienced symptoms like their throats closing to where they felt unable to breathe, their tongues swelling, blocking the airways, developing full body hives, overwhelming itching and discomfort in the skin, eyes swelling shut, nonstop vomiting, fainting, feelings of impending doom, a frantic 911 call, an ambulance ride, some poking and prodding in the emergency room, medications that make you feel really strange. Then you leave with a whole new way of life, including the knowledge that the foods that everyone else eats safely can kill you.
After that awful experience, these people can't just leave the allergist's office or the emergency room and stop eating. To take it back to our analogy, if you were on a plane that crashed, you could live a pretty full life without ever getting on a plane again. But people with food allergies need to eat multiple times a day. Everywhere they go, there is food. In our culture, food is central to celebrating, mourning, socializing, being out and having fun, comforting ourselves when things are tough… We address all of our emotions with food, and all of the most important aspects of our lives and milestones in our lives seem to be connected to food and to some incomplete without it.
In other words, people with food allergies have to get up and get on the airplane again every single day. Many of them, and thankfully most of them, do that. They get used to it and they go on without having significant problems. I'm not here to say that everyone who has food allergies has anxiety. Many of them don't, but they are more prone to it. After even just one significant event or maybe repeated small events, our nervous systems become highly reactive and very sensitive to possible danger.
The vagus nerve, which is the key part of the autonomic nervous system that controls our fight or flight reaction in every person scans the environment for threats and assesses for safety more than five times per second. If a potential threat is sensed, that cascade of physiological changes that we discussed takes place within 15 milliseconds.
Most of us aren't aware of it.
Over time, as the nervous system continues to have that reaction, the nervous system grows more and more reactive and more and more anticipatory of possible danger. And that doesn't just happen in the body. That continued response system affects the brain.
Anxiety in the Brain
I find this really fascinating and I think you will, too: The prefrontal cortex is the part of our brain where we do our rational thinking and regulates our emotions. The volume of that area of the brain reduces in response to trauma. We can see an actual size reduction in the part of our brain that thinks logically and rationally. The amygdala is the part of the brain that houses our emotional reactivity, our fear response. When that part of the brain is activated, the less and less access we have to the prefrontal cortex, where we do our rational thinking.
Most interestingly, though, is what happens in the hippocampus. The hippocampus is where our brain consolidates memories and where it differentiates between the past and the present. It works to remember and make sense of the trauma, and with consistent exposure to the trauma, it shrinks. In other words, the part of the brain that tells us if this is something that happened in the past, or if this is something that's happening to me right now shrinks. When the fear and trauma response is triggered in the body, it becomes harder and harder for people to orient themselves to the fact that their body is reacting to something from the past that may not actually be happening to them in the present.
This isn't a conscious process. This is something that is happening constantly under their surface, scanning and assessing for danger. With that constant scanning going on, if the danger was nowhere near, the body might settle back out of that reactivity and begin to trust again that it's safe. But for those of us who have to get on the plane every day, or for those who have to eat and be around food every day and it surrounds us in our daily lives. Our body is constantly aware of the fact that the potential danger is around us.
What that can look like on the outside isn't necessarily related to the food allergy or an awareness that the body is scanning the environment for danger. Some people can express that and sometimes it's very evident if you watch, especially young kids and environments around food. But most of the time it seems unrelated. It's usually a very general and vague sense of disease. Kids will just say, “Oh, I just want to go home,” or “I can't concentrate in school today.” People might be irritable. Irritability is one of the first signs of nervous system dysregulation. They might lose interest in what they're doing. They might have difficulty concentrating. They can have physical complaints like their stomach hurting, the chest feeling tight, back pain, headaches, that are genuine physical symptoms that they're experiencing. But really that reflects this unconscious process that's constantly taking place of assessing what's happening in the environment around them to determine if they're safe and the signs that they're not safe, which is food.
The Threat is Everywhere
Food is almost always there around them. To make that even more complicated, foods aren't just in food. I have been shocked and continue to be surprised even 12 years into our allergy journey as a family that food is on and in almost everything. With my son's permission, here is a short list of some of the things he has had reactions to that we were not expecting his allergens to be in: hand soap in the public bathrooms, lotions and body products, peanuts in the air on the surfaces at a baseball game, food residue on the checkout belt at the grocery store, nuts that fell off the trees in the yard at our new house, or on a playground, peanut butter smeared on playgrounds, prescriptions and over the counter medications…
Given the fact that food can be anywhere and in anything, not just in food, and that food is at basically all of our gatherings and events and locations that we tend to spend time in, it's easy to see that basically anything can signal danger to the body and can be a trigger for that highly sensitive reactive nervous system to switch into emergency mode.
Unfortunately, this includes so many good things. So many of the things that are healthy and that should be fun and that are good for us and should be spaces where people feel safe and be able to relax and enjoy and connect with other people and not feel afraid or excluded. Over time, it also gets more and more complicated in regards to the nervous system's ability to read situations accurately and assess for danger. The wires get crossed between what should be safe and what could be dangerous. A caring teacher, a safe school building, time spent with friends, all the things that for most people would be a safety signal would be calming and soothing, can trigger people with food allergies based on their past experiences. The nervous system just gets overwhelmed and gets into a state where everything feels like a potential threat, which is not entirely untrue.
To further complicate things, People who have food allergies are at a higher risk for other medical conditions, which just gives them more to worry about as well as more physical symptoms to monitor for and to potentially be triggered by. I won't go into them in too much detail today, but in the future of the podcast/blog, I hope to talk more about some of these situations and conditions that are often related to food allergy anxieties, because they are a part of the puzzle for many people. Things like eczema, asthma, breathing difficulties, having a sensitive gag reflux or cyclical vomiting syndrome, digestive issues, Irritable Bowel Syndrome, Colitis, FPIES, GERD, EOE. All of these additional medical concerns and conditions that can come up or that people often have experienced can expand the nervous system’s scanning and searching in the external environment for danger. It adds to the internal dialogue regarding what's happening inside of my body right now. “What should I be worried about? What is that feeling that I feel on my leg? Is it a rash? Is my breathing a little bit different than it was earlier? Am I having an asthma attack? Is this a reaction?” What there becomes not only a heightened awareness of the outside world, but a heightened awareness of the inside world and the internal physiological symptom of being within one's body.
Anxiety/Allergy Symptom Overlap
All of that said, we're still not to the very, very heart of what's going on here. Let's talk again about the symptoms of anxiety, which are the symptoms that we experience when the vagus nerve turns on the body's fight or flight reaction and we believe we're in danger. We get shaky and sweaty and feel nervous. Our stomachs get upset. We can feel dizzy or lightheaded. Our breathing becomes more rapid. Our heart rate increases. That makes us warm. We have muscle tension. We tremble and be shaky from the adrenaline. We can also feel weak or tired. We can get tightness in the throat from the muscle tension. And we can experience that sense of impending danger or doom. The physical sensations caused by the anxiety that people have from worrying about having an allergic reaction are the same symptoms of an allergic reaction. Almost all of them are the same things that the body does when it's having a legitimate allergic reaction.
And once it's activated. They don't have access to those parts of the brain that we talked about that they need to rationally tell the difference, to logically understand whether or not this could be an allergic reaction or whether these physical changes are from anxiety. They can't calm down to do so because it feels just like they're having an allergic reaction.
It isn't a coincidence that all of these symptoms are the same. The vagus nerve is involved in the allergic response in the body. My temptation here is to share all of the research and get really nerdy and try to hammer this point home. But I'm going to leave that to you if you're interested in reading that, and instead I'll just summarize for you and tell you that there are piles of research about the vagus nerve. The immune system has shown that the vagus nerve can regulate immune responses and inflammation. The brain senses immune reactions in the body through the vagus nerve. It's well established that the vagus nerve is connected to both of these, what appear to be separate reactions and systems in the body, but they are very deeply connected.
This is what I mean when I say that we can't just think away our anxiety about allergies. We can't just use cognitive behavioral techniques or practical coping skills/planning/strategizing/communication/assertiveness skills to give our bodies a sense of control and safety in our environments. As long as that vagus nerve still senses the potential danger and interprets it as a potential danger, it will protect us every time, and it won't listen to us or anything thing that we're trying to tell it.
The strategies that are out there can only be helpful and received if our bodies are in a state of calm and safety. Unfortunately, that's so often not the case for people with food allergies. In my practice, what I have come to focus on is regulating the body first and foremost, and then continuing to establish that safety and that neurological regulation every step of the way with every other intervention that we do. That regulation piece is always a part of it.
The Vagus Nerve
We know that vagus nerve stimulation can have positive effects on many different medical conditions and symptoms, including food allergies. A little more research for you: vagus nerve stimulation can potentially improve food allergies by reducing mast cell activity. It can prevent inflammation, particularly in the stomach. It can reduce itching caused by histamine, which is what's released during allergic reactions. It can reduce airway inflammation that's related to allergies. Vagus nerve stimulation can improve mental and brain health.
The vagus nerve stimulation that they're talking about in most of these studies are in animal models, and they're actually implanting electrodes to stimulate the vagus nerve. That's not what I'm doing in my office with the people that I work with, nor is it what I'm suggesting that you do, obviously, but we do know a lot about other ways that we can stimulate the vagus nerve.
Creating Safety Cues
It's way too much for me to share here all in one episode, but this will be the running theme of what I'll be talking about all throughout this podcast. For now I'll give you the basics: anything that makes you feel safe can calm your nervous system and induce nervous system regulation.
The most important safety cue is social connection. When we are with people who feel safe and we feel socially connected to them, we can move our nervous system out of fear and into safety mode. Trusted relationships are the most crucial piece of helping anyone with food allergies. When we are around people that we trust in and whom we are connected to, and those people are self regulated and those people's nervous systems are calm, we calm down as well. We're social beings, and that's how we assess and determine if we're safe.
There is a lot of public awareness these days about mental health, and I love it that people have more information than ever before. Here's one of the ways though that I think some things are getting misinterpreted. Everyone knows that you should take a deep breath and that taking a deep breath can help you to calm down when you're upset. However, if this isn't something that you regularly incorporate into your day, it might not be helpful. It has to be something that your nervous system associates with safety. If every time your child gets upset or acts out or starts to get angry or nervous, you say, as a scared or frustrated parent or adult in their lives, “Take a deep breath,” then the phrase or the suggestion to take a deep breath becomes triggering and upsetting for them. They don't have access to remember or process your instructions or to do a breathing exercise the way that they might have learned how to do, unless that's regularly incorporated into their routines and familiar to the nervous system.
I have so many people coming into my office saying, “Please help with my anxiety, but don't tell me to take a deep breath or I'll scream!” That's not working. And this is the reason why we're taking the concept of breathing and we're turning it into another anxiety-provoking suggestion. I'm sure you can imagine as an adult how infuriating it would be if you were in an argument with your spouse, or if you turned to a friend or a person that you trust in a moment when you were really anxious and their response was, “Well, just take a deep breath.”
The key is co-regulation using safe people as a model. Just those safe and trusted people being in a calm state can regulate our nervous systems without talking, without necessarily having to use any intervention.
Triggers and Glimmers
Another concept that we hear a lot about on social media and hear people talking about is the idea of triggers. “What triggers your anxiety? What triggered that reaction? These are my triggers.” It's important stuff to know. Triggers can be anything sets off this cascade of reaction in your body by the vagus nerve. Triggers can be these tiny micro moments for those with food allergies. For example, someone opens a lunch bag across the room and I find myself looking to see if it's a peanut butter sandwich that they're pulling out of their bag. I smell cheese in the air as someone eating Doritos, any little micro moment that can trigger our nervous system.
But, we can exert control over that and we can do the opposite. A glimmer is the opposite of a trigger. Glimmers are the micro-moments of safety that also appear all the time, everywhere, all around us in day- to-day life. We don't tend to notice because our bodies are wired to protect us and to be on guard all the time. With practice, instead of scanning for triggers, we can focus on identifying glimmers. We can seek out tiny things that signal safety such as a friendly face, a soothing sound, noticing something in the environment that makes you smile, something comforting, holding your warm cup of tea in your hands in the morning and feeling the warmth, or breathing in the smell and the steam, wearing your favorite sweater that feels so comfortable and soft when you put it on, hearing your kids laughing…
Glimmers are those little moments that remind you that everything is okay, and everybody is safe. We overlook them because we are programmed to pay more attention to negative events than to positive ones. Once we practice noticing glimmers, we find that they're all around us and we begin to look for more.
Action Steps
I have set the goal of wrapping up each podcast episode with three steps that you can take when we're done talking to implement and to utilize what we've talked about in that episode:
1. Start looking for glimmers. If you are interested in polyvagal theory and learning more about it my suggested starting point is the book Anchored by Deb Dana.
2. Watch the movie Inside Out. If you have already watched it, watch it again and then go out and watch Inside Out 2. Therapists are in love with these movies and the way that they demonstrate what happens in our bodies, in our minds, and our emotions. Watch them with all the kids in your life, but they're not just for kids, they're for adults too.
3. Subscribe to the Don’t Feed the Fear podcast or my newsletter if you like what you hear and this reaction that I'm talking about resonates with you.
Conclusion
I hope that this wasn't too much information for you. I don't want you to feel overwhelmed, but I do want you to know what's really important. Early in my food allergy mom journey, my mom gave me a little sign for my house. It said, “True story: Food allergy moms do better research than the FBI.” And I find that that's true.
I think we're a community of people who really want information. I've always been that way throughout my education and training and my PhD program, but it rolled right into food allergy life. Hopefully you feel the same way that I do about wanting enough information at your fingertips to understand what's going on.
Thanks for joining me. And until we chat again, remember: don't feed the fear!
(Please remember that this podcast and all iterations of it online are for educational purposes. Always seek the advice of your doctor with any questions about your own health and wellness. And please don't ever disregard or delay medical advice or attention because of something you've heard here.)