How Autoimmune Disease and Food Allergies Changed My Life…For the Better
As audacious as this may sound, I have reached a place in my journey living with two Autoimmune Diseases and over 300 food allergies and intolerances to boldly proclaim — OK, actually to quietly whisper — a revelation I had on the side of a mountain. Autoimmune Disease and Food Allergies have changed my life for the better.
A friend and I hiked an area of the Olympic Peninsula in Washington State described as, “pristine” and “remote” trail. You can pretty much translate this to mean that there might be wild animals (bear canisters are required), and that you probably won’t see anyone else while you are there.
Indeed, at the Wilderness Information Center (WIC) in Port Angeles, WA, where you pay your fees for trail use and declare your known location and destination in case you need Search and Rescue, we were encouraged to try (yet we resisted!) a lesser hike with more comfortable, traditional camping grounds. After some deliberation, we firmed up our plans for a 15-mile roundtrip hike with our backpacks full of everything we needed for a safe night under the stars and vigorous hiking.
To help you get a better picture of what we were facing, I must share with you a few preliminary facts about myself. At the age of 50, I’m a 5 foot 3 inch Asian female weighing in at 114 pounds, with the majority of healthy fat eaten away by both my disease and my fitness training for long-distance triathlon and long-endurance trail running. My ribs stick out enough that I joke my friends that most wild animals would find me too bony to eat. Now, put a 20-pound pack on my narrow shoulders (the backpack was borrowed from my friend), point me up a mountain trail with an elevation change of about 6500 feet, and place a few beautiful but slippery creek crossings into that image. Finally, you have the visual for our adventurous weekend.
And for the final, and rather embarrassing reveal: this was my first overnight backpacking trip ever. I didn’t even have a proper pair of hiking boots, so I wore what I had — waterproof trail running shoes with no ankle support. I own a set of trekking poles, and I have fabulously wicking clothing and trail hiking pants.
Unfortunately, our trip was delayed by long lines for the Edmonds-Kingston Ferry to get us onto the peninsula. By the time we got to the trailhead near Lake Crescent, we had limited time to hike before darkness fell. The assistant at the WIC office had told us to be on the lookout for clearings off the trail about three and a half miles in, so we set an aggressive hiking pace and headed into the fading light in search of our non-marked campsite.
Managing my energy levels on a trip requires me to be aware of passing time, energy expenditure, and both the amount and type of food I eat. As a person with Celiac Disease and food allergies, it’s often too risky to eat processed foods or stop in a restaurant that I haven’t vetted for clean food preparation free of cross-contamination with my allergies. Everything that I will eat for the next 24 hours must come from the bag that I packed the day before. I can’t even eat most commercially-made food designed for campers, as they are often filled with corn, wheat gluten in the form of noodles, or use oils such as soybean, sunflower seed, or emulsifier that makes me ill. While friends can grab a Coke and a smile, I have to check to see if that Coke has high fructose corn syrup in it. And if it’s cane sugar, I have to limit how much I can consume, or risk an uncomfortable evening.
As the evening light dimmed, both of us quietly considered the possibility that we might not find the clearing to camp, or we might get too tired to continue on, even while prepared with headlamps for night hiking. And as we climbed, I reached into my pocket and rationed out a portion of the food I packed, simultaneously calculating calories in while subtracting calories from the food cache remaining.
When we finally reached a less-than-ideal yet suitable place to pitch a tent and cook dinner, we were both fatigued. I dumped my backpack on the ground with a satisfying thump. Reapplying bug spray to each others face, neck, and clothing, we wordlessly extracted our JetBoil camp stoves. Holding my water bladder like an IV bag, I released water into the JetBoil container and began boiling it for our late night meal.
What was for dinner? Maifun rice stick noodles, dehydrated bacon, dehydrated kale, and a handful of dehydrated strawberries (my friend had a Mountain House pre-prepared dehydrated meal). Two years before, I had invested in a Cabelas commercial-grade dehydrator and taught myself how to make my own jerky, vegetables, and even “instant rice”. I wanted to be able to travel the world and not allow food to be the limiter. Previously, I had used the dehydrator to help me create a variety of food options for travel and training for an Ironman. I can attest that beef jerky worked well to help get me across that finish line!
Within a few bites of our dinner, we were chatting and joking again. Satiating our growling tummies and fueling our hypoglycemic brain cells feels like some kind of horrible dark magic spell being lifted. We had the energy to brush our teeth, slip into our sleeping bags, and eventually take turns listening to the wild and sleeping until dawn.
Breakfast was more of the same for me, plus gluten free crackers and some cashews. I find a more protein and fat-laden breakfast helps prepare my body for endurance activities, and thus bacon was a great choice for this trip.
As we got back on the trail to complete the 15 mile out and back, my friend and I began to talk about the importance of food, and why America is caught in a culture of convenience that is contributing to an epidemic of preventable diseases such as Type II Diabetes, heart attack and stroke, and other complications of obesity. That’s when I found myself saying what you read in the headline.
My Autoimmune Diseases and over 300 Food Allergies and Intolerances have given me only two choices: 1) Change the way I choose and prepare food, or 2) Take my chances by eating out or eating processed and commercially made food. When I take the first option, I rarely if ever become ill. My guts function normally, I can absorb nutrients better, and I have more available energy to spend. If I take the second option, I can become ill within an hour or less, or worse, I can end up in the hospital, fighting for my life.
Which one would you choose? Is food ever so irresistible that you would risk eating it if there was more than a chance it could put you in the hospital? Would I ever be so lackadaisical as to grab something in front of me instead of planning my food carefully?
Over the past four years since I was diagnosed with Celiac Disease, I have been in the hospital for food-related reactions more times I have been in the hospital for anything all the previous years combined. I have had my guts scanned, my fecal sample analyzed, my trips researched for risk of parasites, and all low-processed food manufacturers called to verify allergen-free food lines and preparation techniques. Thus, I have learned that the weakest link in the whole process of trying to feed myself and keep myself safe is the moment when I’m most hungry AND my available options are limited.
I have learned that in those moments, the best thing for me to do is not eat. The way to not eat and yet remain upright is to become a “fat burner”. By training my body to prefer burning fat over burning carbohydrates, I can make my body burn the 70,000+ calories available instead of feeding it carbohydrates (essentially, sugars). While I do not try to eat a pure keto diet, my Celiac diet is naturally low in starches and absent of wheat, rye, barley, oats, and corn.
It would be easy for me to complain bitterly that I cannot stop into a cafe and buy myself a croissant with butter and a cafe au lait when I am hungry. I can wax eloquently about the loveliest three-cheese lasagne I baked for friends many years ago, which had us scraping the bottom of the dish for the last morsels of tomato-infused meat and a blanket of pasta. Yet, here I was, hauling my body up a steep trail at an average pace of 16 minutes per mile, and my body was asking me why I wouldn’t just start running. I burn fat; I have energy. Running can be easier than walking.
No, I realized on that mountain that I had very little to complain about. These diseases — more specifically Celiac Disease — and these food allergies have actually changed my life for the better. The combination has caused me to radically change the way I think about food. Food is Fuel, and Food is Medicine. It has become the way I heal myself so I can live another day to see this beautiful forest that I am chomping at the bit to run through. They have pointed me to the opportunity to become mindful of every single bit of food that enters my mouth, and as dull as this might sound, they have made me mindful of every moment of elimination as well.
Mindfulness allows me to tell if I’m teetering towards dehydration by the color and frequency of my urine because I actually measure how much fluid I’m taking and recall how many electrolyte tablets I’ve ingested. I have hard data on calories, and eat by the clock even when I’m not exercising. I can even tell you which medications might have been formulated with corn (one of my allergens), because I’ve had to call manufacturers to get information that isn’t required on the drug’s label. I know why your bars, gels, and race “cookies” make your stomach hurt.
To manage my health with these diseases and food allergies, I’ve chosen to wake up and understand that the food industry isn’t always doing me a favor by creating another processed food designed to save me time in the kitchen. Sometimes, the time you save in the kitchen will simply be spent crying over a toilet, or lying in bed with aching joints and fatigue. The added sugars in processed food cause me such bad nausea and diarrhea, I no longer crave candy and sweets; a serving of real fruit is sweet enough for me.
They have forced me to become more mindful, to be so incredibly in tune with my body and its responses, that I have learned how to take care of the most important real estate that I will ever own — this corporeal home. By being given no other realistic choice than to become aware of my energy expenditure, calories in, electrolyte balance, and gut microbiome health, I’ve become something more than I once had been.
I wonder sometimes if I’d be the triathlete and ultrarunner I am today if I didn’t have autoimmune diseases. It’s not that I am winning any awards for faster finish times. I’m not; in fact, I am a back-of-the-pack or middle-of-the-pack Age Group athlete. Yet I feel fortunate that I do not have to struggle against the same food option others have, the options that cause them such grief because it leads to long-term struggles with weight gain, GI upset, inflammation, gut dysbiosis, metabolic issues, and fluctuating mood. While I would never wish my disease on anyone, I can’t get away from the fact that my life is irrevocably changed… and I like the change.
Autoimmune diseases are debilitating. They often cause disability, forcing its host to remain at home, unable to work, and drained of energy to care for their children. So when I say that autoimmune disease and food allergies changed my life for the better, I’m not asking you to even consider projecting that thought onto anyone else’s condition, nor to flog yourself for not feeling the same way about it if you suffer from autoimmune disease. Neither am I concluding that every bad situation has a silver lining of glowing positivity hidden within it. We’re adult enough to realize that some situations are just tough, all around. If something sucks, it just sucks.
I am saying that I’ve come to understand that this horrible, awful, no-good, “sucky” gastrointestinal disease and so many food allergies that some restaurants will refuse to even try to serve me has changed my way of living and relating to a world of food and an onslaught of unlimited choice.
And I can’t stop feeling grateful for it.