Celiac burnout is common and not talked about enough. This is a shame because it is eating away at so many in the gluten-free community.
In fact, many of my clients come to me burnt out on managing celiac, even if they can’t recognize it themselves. I see it in the way they take care of themselves and in how they talk about celiac.
Celiac exhausts you and no one sees it but I see it. I’m going to tell you why celiac makes you exhausted, the warning signs of celiac burnout, and what to do about it.
In order to understand celiac burnout, we need to understand celiac disease. As a refresher, celiac disease is an autoimmune disease. It’s when the immune system reacts to gluten by launching an attack on it and itself.
This reaction to gluten causes damage to the small intestine. It also leaves symptomatic celiacs with a wave of distressing symptoms.
This self-destructive nature of the immune system in the gut not only triggers pain in many celiacs but also disrupts many needed body processes.
All of this together causes celiacs to be always be “on” around food in order to prevent this reaction. And if a celiac does have a reaction, it often makes everything in life harder. From taking care of themselves to doing basic job functions at work.
The good news is that all of the symptoms related to celiac can be avoided with a gluten-free diet. In fact, a gluten-free diet, or a celiac diet, is the only treatment for celiac.
A celiac diet is not as easy as some like to say it is. It disrupts your entire way of living. Everything you knew or did before is changed. From how you cook and feed yourself to how you celebrate birthdays. Celiac is exhausting.
It might not sound like a big deal but it takes a lot to learn how to re-live your life. It takes a lot to figure out how food now fits not just at the dinner table but in your celebrations, traditions, culture, and more. It’s understandable that celiacs get burned out.
I briefly touched on it above, but celiac disease is not a piece of cake to manage.
In a 2014 study on the treatment burden of celiac disease, celiac disease was rated as having one of the highest treatment burdens of chronic diseases. In fact, it’s just second to end-stage renal disease. Study participants cited the cost of food, the stress of eating outside of the home, time to prepare food, and more as reasons behind the high burden of celiac.
In a 2005 study on the lived experiences of celiac, researchers interviewed participants with celiac on situations that caused confusion or discomfort in their disease management. Researchers found that there were 195 dilemmas experienced across working, grocery shopping, traveling, and both eating at home and outside the home. That’s 195 additional problems to deal with on top of everyday living.
But if you have celiac, you don’t need research to tell you what you already know. Living with celiac is hard. With as much as celiac impacts everyday life, you can see why celiac burnout is a thing. You can see why celiac exhausts people.
While there is no generally accepted definition of burnout, there are some general themes. Generally, all three themes must be present. These themes include feeling exhausted, alienated from everyday activities, and having reduced performance in those activities. Sound familiar?
With the general idea of what burnout is, celiac burnout is specific to all things celiac. It’s different from being fatigued by celiac or being exhausted by celiac as it includes other symptoms as well.
Symptoms like being alienated from everyday activities. For celiac, this might look like feeling left out at work when someone brings in donuts for everyone. Or very stressed over someone inviting you to a dinner party.
Burnout also differs from celiac exhaustion and fatigue as it also includes having reduced performance in everyday activities. Meaning, the way you act is impacted by the isolation and alienation you might feel.
For example, you may not be as social at a dinner party. You might even reject the invitation despite wanting to go to the dinner party. At work when people bring in donuts, you might find yourself trying to ignore your thoughts around it for minutes even hours after the fact.
Ultimately, celiac burnout is when celiac weighs on you so heavily that it’s impacted every part of your life. From feeding yourself, to doing everyday social things. You are tired, you feel isolated, and how you go about life is understandably impacted.
Taking a very actionable approach to this blog post, if you want to know if you have celiac burnout below are some signs you might have it:
In the book “Burnout: The Secret to Unlocking the Stress Cycle” by Emily Nagoski, they talk about addressing burnout through completing the stress cycle. The stress cycle is described as the cycle to which we experience stress, react to stress, and resolve stress.
In this book, they clarify the difference between stress (the body response that happens when you face a threat) and a stressor (which is the threat your body responds to).
Emily goes on to explain that as we’ve adapted over the years, our stress response has started to be activated to everyday things like stress at work, stress from classes or I would say, in the case of celiac, stress around food and food events.
In the past when our stress response activated, we would do something to physically remove ourselves and signal to ourselves that we were safe. Today, sometimes we get stuck in the stress cycle, never-ending it for the day of the event and we carry it with us. Over time, the unaddressed stress builds up and burns us out.
So to address burnout, we need to address the stress that’s gotten us there. Both by immediately addressing stress and better coping with stressors.
To address celiac burnout, we must end the stress cycles that have gotten us to a place of burnout. 9 times out of 10, food is what has gotten us to a place of burnout.
Often we find ourselves stressed and worried for our safety around food. This is natural, gluten is a harmful substance and we must take care to avoid it however, it’s important we don’t get stuck in the stress response.
In fact, getting stuck in the stress cycle around food is considered a self-care or attunement disruptor. It redirects the energy we’d use for digestion towards survival. Due to this, f we get stuck in it, it can trigger the very symptoms we are trying to avoid. Not only that but it can carry on to other meal-times as well if we never calm down.
So the importance here is to find things to do to end your stress cycle, if not for anything else but for stressful food events.
Below are things authors Emily and Amelia Nagoski say can help with this cycle include:
Most immediately, in addressing celiac burnout be sure to end the stress cycle when you experience stress. This requires some awareness of how you’re feeling but as you try to tune in more and more, this will become second nature.
On top of these immediately actionable steps, managing stress is also important by practicing self-care. Self-care is important with celiac and thus, it’s vital for you to have a solid self-care practice.
Now that we have a plan to address stress building up into burnout, we need a plan to minimize the stressors that are causing the stress in our life. Think of it like this: addressing stress is treating the symptom and addressing the stressor is like treating the cause.
So what’s causing you to stress with celiac? Take a moment and think about everything that stresses you out with living with celiac disease. For this blog post to be the most helpful, I’m going to need some participation from you *wink*.
Now that you have a list of things that stress you out, you have 2 options. Option 1 is to write down what you need to feel less stressed by those things. If that feels too hard, your second option is to journal on it.
Below is how I coach my clients to journal on these things.
Now, this is a self-help guide to burnout with celiac but sometimes it’s hard to pull yourself out. If you need help, if it feels too hard to do it by yourself, I’m here. I help clients with celiac burnout all of the time, and I’d be honored to help you.
Lastly, when it comes to celiac burnout, one of the things that can help the most is getting help. Whether this be asking for help from friends and family or getting the proper celiac safety training that will make celiac feel routine.
When it comes to stopping or preventing celiac burnout, making sure you have the right support is essential. Some things to consider are:
Ultimately, getting help is one of the most powerful ways to combat burnout with celiac. Whether it’s seeking professional guidance on celiac safety to help simplify your life or it’s teaching friends and family how to keep you safe, getting help is essential.
Want the help of a registered dietitian who’s been living with celiac for over 10 years? I cover all of the basics of celiac safety in the USA to help you make avoiding gluten feel routine in the Celiac Crash Course. Check it out here.