You know my nutrition success story, which I’ve shared in detail here. At age 18, doctors said surgery and medications were the only answer to my autoimmune disease. Faced with severe symptoms and forced to leave college, I returned home and began a grain-free, holistic lifestyle. And that birthed Empowered Sustenance.
But I’ve not yet shared the story where food didn’t work.
I originally titled this post “My Nutrition Failure Story” because I thought I didn’t get it right the first time. But in reality, this part of my story was essential to my healing. What we perceive as mistakes are, often, steps forward on our healing journey.
I. The first attempt
I remember receiving my diagnosis of ulcerative colitis lying on a hospital bed, a bleak surface which I would come to know well over the next few years. Weakened and confused from my severe symptoms, as well the ordeal of tests and IV infusions the preceding day, the doctor spoke my fate to my mom, rather than me. After all, I was young and traumatized from the experience.
In that moment, the physician understandably gave the responsibility of my health to my parents. But even though I was young, my life would be a different story if that responsibility was immediately placed on my shoulders. It took years before I understood the physiology behind my diagnosis, and years before I questioned the knowledge of my doctors. It took years before I decided to do change my lifestyle and diet…. a shift which, I was told, was too hard for a teenager, and likely would offer no results.
Months after my diagnosis, my mom took me to a highly recommended holistic practitioner. At this point, my symptoms were responding to my medications, although I was excruciatingly fatigued and felt crippled by the unpleasant pharmaceutical side effects. My doctor had presented the meds like a lifetime sentence, and I didn’t know I ever had an option to live without them. My mom, unversed in natural medicine but desperate to support her daughter, believed that some nutrition changes could help me feel better on the medication.
This experienced practitioner, in the first session, didn’t hesitate for a moment before she directed me to eliminate gluten, cow dairy, nightshades, sugar and eggs. Although she explained the concept of food re-introductions after a period of healing, that flicker of hope flew right back out of my spinning head. I couldn’t envision making this dietary shift. What was left to eat?
She further told me to eat fermented foods, some bizarre beverage called bone broth, a horrifying prospect called raw apple cider vinegar, and an equally foreign food called coconut oil. She further suggested the entire family make this dietary shift.
Staggered by the unfathomable requirement, we left that session with Nourishing Traditions and headed to the closest natural food co-op. We walked the isles in bewildered confusion, rotating cans and jars and boxes on the shelves to read the ingredient list. We mumbled our inner dialogue in the process. Does barley have gluten? What is brown rice syrup… is that sugar? This canned soup works! Oh wait, no, it has tomatoes.
Firsts stick in the mind. First dance recital, first kiss, first car. First time in the grocery store buying raw apple cider vinegar and himalayan salt. That sticks in my mind. The vinegar had a brown, cloudy sea creature swirling in the bottom of the jar. It turned my stomach. The salt was pink, not white. Salt was supposed to be white.
We made our way to the checkout lane with a cart filled, mostly, with seemingly preposterous renditions of familiar food. Ice cream made with coconut milk and agave nectar. A loaf of rice flour bread the weight of a bowling ball. Jam sweetened with fruit instead of sugar. Goat cheese instead of cow cheese. And, sequestered in one corner of the cart, those strange and startling food introductions like pink salt.
II. Avoiding Commitment
Commitment to taking my daily medication was one thing, because it gave me immediate results. Commitment to eating unfamiliar food and giving up gluten, when I saw no immediate result? That was another matter.
I was game for the easy changes. Gluten free toast is rather sandy, but it still offers the familiarity and comfort of toast. Goat cheese grew on me. And pink salt tasted just like white salt. But that vinegar? Gag. Then, my mom and I tried making fermented carrots with spoiled results. We gave homemade broth a try, spilled it during the straining process, and watched in horror as 24 hours of liquid gold went down the drain.
I cried. I said it was too hard. I said I could do this gluten-free thing but I needed other foods back in my day. Wanting to make me as comfortable as possible in the midst of my unpleasant symptoms (and now the side effects of medications), my mom asked the practitioner if we could take a “slower pace.” The practitioner replied, “No, I believe this is the only way to see results. It is crucial to commit.”
In the wisdom of her experience, she knew I needed to commit. She knew, as I know now, that my disease would only progress unless I made the full intention to heal my body. But I chose not to listen to her, and I didn’t maintain regular appointments with her.
And because I didn’t commit in that moment, my disease progressed for four more years before I reached the pivotal point.
I dabbled in dietary changes. I remained gluten free, but at the mercy of severe carb and chocolate cravings. I had no idea that replacing gluten grains with gluten-free grains still fostered my daily blood-sugar-rollercoaster. I didn’t understand that agave nectar was no better than white sugar. I didn’t know that each bite of my gluten-free toast was likely worsening my leaky gut.
Dabbling doesn’t work to stop the progression of a severe autoimmune disease. My symptoms worsened, my flare-ups became more frequent, and my physical strength declined each month. I marked each year, from age 14 to 18, by the increasing intensity of the pharmaceuticals prescribed to me.
Then, at 18, the medications all failed. For the fourth time, I lay ghost-white and skeletal, in the numb sterility of a hospital bed. A similarly numb and sterile doctor told me that my large intestine would need to be removed soon, and replaced with a colostomy bag.
IV. The Commitment
I can pinpoint the moment when I thought, “Okay. Now I’ll do anything to keep my intestines inside of me.” I had returned home, and was laying in my bed, feeling too weakened to even bathe myself. I thought, “With my body intact, I have the hope of dancing again. But I can never imagine taking another ballet class if I am wearing a colostomy bag.”
Ballet class may seem like a little matter when weighted against the other consequences of colon removal. But, until that point in my life, dancing had allowed me the closest contact with my soul. And I couldn’t bear to burn that bridge to my being.
And then comes the story you’ve heard already. The one where I do commit fully, and where I devote myself to digging for answers. I shared that story by clicking “Publish,” while my finger trembled in apprehension.
V. What I wish I had been told
Chronic disease progresses or heals. There is no neutral place. Autoimmunity, be it rheumatoid arthritis or MS or ulcerative colitis, is your body waving a red flag, desperately attempting to get your attention. Every day, with each bite of food you put into your mouth, and even with each thought you think, you either fuel or reverse a disease state. (If you have an autoimmune diagnosis, I encourage you to read the guidebook I wrote for you, which is completely free for download. Here is my Nutrition + Autoimmune Success Guide).
Nip autoimmunity in the bud. I had the opportunity to listen to my body, to prevent years of damage to my intestinal tissue. If I had began an autoimmune diet immediately after my diagnosis, I know I would have avoided the threat of surgery. The good news? Even at the severe stage of the disease, I was able to grab the steering wheel and change the course of my health. It just took more effort and time, that late in the game, to overcome the physical and mental inertia of illness.
In this world, gluten free is not enough. The accumulated affects of environmental toxins, chemicals, chronic stress, and pharmaceuticals create more deeply health-compromised children with each generation. Tragically, we often come into this toxic world with an impending disease diagnosis. When disease is in place, it requires seemingly drastic steps to bring the body to optimal health. Going gluten free isn’t going to cut it – lifestyle and other dietary changes must be observed.
It is not my fault I developed a chronic disease. But it is my responsibility, mine alone, to change the course of my health. Only when I dug my way to that comprehension could I take responsibility for transforming my health. Although genetic susceptibility and my environment paved the way for my diagnosis, I will never play the victim card. That prevents me from both empowering and sustaining my health. Victims never heal, heroes do.
Open your eyes to your choices. At first glance, the restriction of an autoimmune diet may knock the breath out of you. Here’s some tough love that I wish someone told me: Okay, mourn the loss for a minute, and now get over it. Look at the glut of choice in your first-world lifestyle – not just in your menu, but in your daily life. Even with a restricted diet, you eat luxuriously compared to 95% of the word’s population. Practice gratitude for the profundity of options in other areas of your life.
This will teach you a critical life skill: how to cook. When you restrict your menu, mealtime variety depends on your culinary skills. If you want this healing journey to be a delicious journey, you’d better learn how to make vegetables taste delicious. I certainly learned how, and quickly!
You make food a ritual or a chore. You choose to make your meal delicious, and not simply with your cooking skills. No matter how minimalist your menu, you make it a feast by garnishing it with gratitude and eating it with loved ones.
Have you had a similar nutrition story? Did it take a health crisis to lead you to make radical dietary changes?