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Autoimmune Stories:

Margaux's Story: When Food Sensitivities Catch You Off Guard

Margaux Thieme-Burdette January 26, 2020

Adverse reactions to various foods are quite common for people with autoimmune disease or related conditions. For many of us, it’s simply part of living with chronic illness.

Gluten, dairy, soy, eggs, and other sensitivities mean that nourishing ourselves is walking a tightrope. Even a previously “safe” food can trigger symptoms, depending on when and how it was eaten, what it was eaten with, the amount consumed, and undiscovered sensitivities. Diet and other lifestyle factors also play into this disorienting balancing act.

For Margaux, food sensitivities result in a frequent bombardment of symptoms like acid reflux, abdominal and joint pain, bloating, flu-like aches, nausea, migraines, and faintness. They are triggered by some foods and food additives as well as harsh chemicals and pollutants, and are more or less severe depending on factors like stress levels and sleep hygiene.

When Margaux is tempted to neglect mental health and her intuition, the scene below serves as a gentle reminder to listen to her body and act upon what it’s telling her.

Margaux's Story

The First Sign
It was a dark morning as I went into the kitchen for breakfast, groping the walls for a light switch. A cyclone of to-do lists and worries had jolted me out of a deep sleep, insisting that my brain was alert enough to take on the day.

I warmed my porridge on the stove, ignoring the waft of nausea that fluttered up my throat. I was used to this sickly feeling at mealtimes because of my chronic acid reflux, but after just waking up? This was odd. Still, I shrugged my shoulders and kept poking at the frozen, orange cylinder sizzling in the pot.

Using Food to Heal
A few weeks ago I’d made a large batch of “noatmeal” and stuffed my freezer full of single portions. It was a cozy breakfast porridge made with acorn squash instead of oats, plus coconut milk and a few spices. “Noatmeal” is a comforting, grain-free option for those of us on certain elimination and healing diets, like the Autoimmune Protocol (a.k.a. AIP).

The Autoimmune Protocol (AIP) has helped me pinpoint which foods are causing harm

The AIP approach excludes anything that could potentially cause inflammation or exacerbate intestinal dysbiosis like dairy, gluten, processed foods, nuts, nightshades, and sugar, while adding in more nutrient-dense foods. It involves a primary elimination period, followed by multiple reintroduction phases.

The Autoimmune Protocol has helped me pinpoint which foods are causing harm and triggering painful reactions. It has also alleviated many symptoms and allowed for more control over my illness. I’ve since combined it with a low-FODMAP diet and other adjustments, according to what my body can tolerate. If you’re considering elimination diets like these, I recommend working with a registered dietitian who can guide you through this very personal and challenging process.

Stress and Food Reactions
I was attempting to calmly stir my food, but a long list of to-do’s invaded my head-space, circling like vultures. Don’t forget to… Review that list before the call… Gotta write that down!

Thus commenced the studio apartment version of the hundred yard dash – kitchen to office to kitchen to office. Stirring pot. Writing on laptop. Stirring pot. Writing on paper. Adding raisins to pot. Writing on phone. You get the idea. My downstairs neighbors were probably wondering if I started a side gig running a kangaroo daycare.

Those crazed, 3am wake-ups were signaling a major problem

I was simply trying to generate a new superpower where you sprout an extra brain and a couple more limbs, and suddenly have the ability to cook, check email, write, and put on makeup all at the same time.

Just stop working by 4pm today, a voice echoed in my head, then you can relax.

Relax. This is code for spending two hours cooking dinner and eating while researching air purifiers. Speeding over to a coffee shop to meet a friend. Falling asleep while scrolling through articles about Candida overgrowth and estrogen mimickers.

In the middle of a restless sleep, I’d wake up at 3am with a fiery, burning throat and equally burning desire to write down all my brilliant ideas before they disappeared. I might fall asleep for another hour, before opening my bloodshot eyes to Instagram and emails. And then I’d dive out of bed (despite the lack of fire alarm or other emergency) to get back on that hamster wheel.

Those crazed, 3am wake-ups were signaling a major problem.

My cortisol (a hormone responsible for mediating metabolism, sleep cycles, and stress response) was spiking at the wrong time, and remaining active for much too long. Cortisol is meant to increase in the morning when we’re ready to start the day, and decrease at night as we wind down for bed.

This stress hormone – cortisol – also acts as the body’s alarm system, rising in the form of elevated heart rate, blood pressure, and blood glucose levels as the sympathetic nervous system (a.k.a. fight or flight mode) is activated. This enables appropriate responses when faced with threats. If the body stays in this state for extended periods of time or at inappropriate times, however, it can have negative effects. It is not normal or healthy for our bodies to be in a chronic, low-grade state of stress. The consequences can involve issues with the gut microbiome and endocrine, immune, digestive, and reproductive systems.

Deep down, the burden of my health condition weighed heavily on me

Those spikes in cortisol in the middle of the night, that perpetual state of frenzy I was living in – they were the result of my chronic conditions. But they were equally influenced by the choices I was making in my life and how I was reacting to external stressors.

My body has been a hodgepodge of hormonal imbalances and inflammation since 2013. It took six years (yes, SIX years!) to finally recognize the emotional component in healing. It didn’t matter how strong I was, or how well I felt I was handling my health issues. Deep down, the burden of my health condition – of trying to find a diagnosis, advocating for myself, budgeting for all the care that my insurance didn’t cover – weighed heavily on me.

Having a chronic condition is a stressor all on its own. This ball and chain I dragged around 24/7 came with a train of fluctuating emotions like frustration, overwhelm, shame, sorrow, disappointment, anger, fear, and hopelessness. I’m sure there’s many more. Once in a while, a deep grief for the life I’d lost would also settle in amidst the chaos.

I had been putting too much pressure on myself and neglecting my mental health

Add in a heaping spoonful of daily life and work challenges, plus the enormous amount of time and energy spent in the kitchen addressing food sensitivities and using nutrition to heal. I was left with this vicious cycle of chronic pain and symptoms fueling imbalanced stress responses to that pain, and vice versa.

It got so bad that, mentally, that I had nowhere to go. Years of my chronic illness life had been spent discounting the fact that living on-edge, in a constant state of worry and pressure, could exacerbate symptoms or contribute to my inability to heal.

Now it was time to acknowledge the power I possessed to influence my current circumstances. The only thing to do was tiptoe forward into the lukewarm embrace of acceptance. I had been putting too much pressure on myself and neglecting my mental health.

Step one was understanding that I needed to better manage my stress levels. Step two was finding the tools to properly address them – a phase I hadn’t yet entered as I rushed around my apartment that morning.

Pushing the Limit

I ate this the other day and I was fine…

I dug into my to-do list while slopping spoons of squash into my mouth. Creamy, nutty, easy fuel. There was no time to prep an elaborate meal, to sit and chew and relax. No time to notice that I was breathing through my mouth to avoid the smell of it.

About halfway through the bowl, I had the feeling that I should stop eating. It gradually started to taste – not just smell – like vomit.

That makes no sense. I ate this the other day, and I was fine…

As I continued, a low roar muffled deep within my gut. I nearly finished the bowl, forcing the spoon up to my mouth, when the pain shot into my torso. Oh no.. not again.

When this happens, I imagine a noxious little creature crouched inside my belly, slowly wringing out sections of my intestines like wet socks. The unwelcome resident then dries them with a bike pump, stretching the tissue so taught it almost pops.

I got up to rid myself of tight yoga pants and put a dress on, walking gingerly to my closet as if the floor was made of broken glass. Stomach acid was crawling up the walls of my esophagus, threatening to shoot out my mouth. Every object in front of me flickered like a hologram.

I lost my ability to focus or process clear thoughts. And I happened to be in the middle of a meeting

When I got back to my chair, I folded over my searing, swollen bump thinking, I don’t want to do this anymore.

WHY didn’t I just STOP eating it!?

But if you were to see me in that moment, you would’ve assumed that I’d had some iffy shrimp. Or that I’d gone a little overboard on wine Wednesday. The pain wasn’t written all over my face in streaky tears or a hot, bumpy rash. People might’ve  simply written off my reaction as an attention-getting tactic, or rolled their eyes and insisted that it wasn’t that bad, that I was being dramatic, or even “faking it.”

Part of what made me feel dysfunctional was the pain. Another part was the frustration of having an invisible illness, and the energy it takes to explain what no one else can see. But there was an additional, less familiar, element. As if my brain had been taken over by a 2-year-old playing with a Rubix cube. I lost my ability to focus or process clear thoughts. This was a new, alien symptom I would later find out is called “brain fog.” And I happened to be in the middle of a meeting.

Thankfully, the work I do is centered around autoimmune disease, and therefore, moments like this when I’m on a call and can barely put together a sentence, are greeted with compassion rather than judgement.

Many of us are not so lucky, as it’s all too common for autoimmune patients to lose their jobs because of their illnesses. Instead, my symptoms serve as a catalyst for the work we do, and a constant reminder that you never know what someone else may be going through.

I chalked it up to a perfect storm of high stress, an unhappy gut, and the wrong food at the wrong time

I stayed on the call and after about two hours, the pain, brain fog, and general malaise faded.

Running hot water over the rest of the frozen “noatmeal”, I barely felt a prick of guilt as I dumped it into the compost bin. Now I could pretend to be normal again – until the next time.

The next day or two it would be crucial to avoid all known trigger foods. But apart from a little extra bloating and stomach upset, I would go on as if nothing had happened.
Young woman with purple scarf smiling in redwood forest
It could’ve been a new sensitivity to acorn squash or maybe a cross-contamination. But in the end, I chalked it up to a perfect storm of high stress, an unhappy gut, and the wrong food at the wrong time for my challenged system.

After a six-month squash hiatus and healing my body a little more, I would go back to eating acorn squash without any reactions.

There’s still a long way to go, but through some deep internal work, compassionate practitioners, and lifestyle adjustments, these debilitating episodes have become less and less frequent.

-Margaux Thieme-Burdette

Tips for Dealing with
Unexpected Food Reactions

  • Listen to your senses. The subconscious mind is constantly giving you hints, which are important to distinguish from fear. Fear is emotionally-charged and based upon past experiences or future uncertainties, while intuition is a clear signal anchored in the present. I casually check in with myself if I’m unsure. Do I see, smell, hear, taste, or feel something that gives me pause? And I always have an ear out for that little voice.
  • Accept the unexpected. Sometimes, eating a food on the “yes” list will lead to a reaction. You may also accidentally (or intentionally) eat a food on the “no” list. Rather than creating fear and frustration around it, try to reframe the reaction. It’s not possible to turn back time. Instead, pay attention to the internal language rotating through your mind and repeat kind, comforting words like: It’s ok, it happens. Nothing is permanent. This is where I am now, but it’s only temporary. What can I do to move forward? How can I treat myself with kindness?
  • Enjoy meals in a calm state of mind. Sharing meals with others is a wonderful practice. But if you work from home like I do, you may be eating alone a lot. I like to read a fun book that helps me unwind and forget about the pressures of daily life. It’s also soothing to play some nature sounds in the background.
  • Eat at the table. Mealtime is a ritual for me, like my bedtime routine. I try not to pick at food while I’m cooking, snack at my desk (that’s a tough one!), or multitask during meals. Breakfast, lunch, and dinner are often eaten at an uncluttered, simply-set table with placemats and little bunch of flowers or small plant. It helps me stay mindful, and focused on nothing but relaxing, tasting, chewing slowly, and digesting.
  • Pay attention to stress. Becoming aware of unhealthy (and completely normal!) reactions to having a chronic illness can be extremely helpful. Chronic stress can impact the digestive, immune, and endocrine system, playing a role in imbalanced and unusual reactions to food as well as other things. It can also influence the ability to tap into what your subconscious mind is telling you.
  • Practice self-awareness and self-care. There are healthy ways to respond to stress or prevent it from taking control in the first place. I’m learning to say “no” to things that would make me feel overwhelmed, to wake up in the morning and journal instead of jumping down an internet rabbit hole, to practice deep breathing, and to listen to my needs and take action. I periodically check in with myself on a mental and emotional level, just as I do when exploring food reactions. What emotions am I feeling today? Am I experiencing physical signs of my emotional state like a tight chest or elevated heartrate? What is one small thing I can do to keep myself calm? Am I taking breaks from researching and thinking about my illness?

NOTE: If incorporating these kinds of practices into your life is causing more stress, if you are frustrated or disappointed with yourself for not “doing everything right” or sticking to certain lifestyle adjustments, the best thing you can do in those moments is show yourself compassion. It’s also highly recommended to seek counsel from a licensed therapist with experience in chronic illness or a practitioner specializing in food sensitivities
Global Autoimmune Institute Mini LogoThe views and opinions expressed in this article are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.

Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!

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