SARAH MESSER KEENAN
Don’t get me wrong, the years leading up to and following my diagnosis of Celiac disease were a struggle; however, Celiac has brought the gift of awareness even deeper into my life. Had it not been for Celiac, I may never have stopped to think about exactly what kind of fuel I was putting into my body, mind, and spirit.
For the most part, I was a pretty average kid. Of course, there were days I was low energy, days I didn’t feel well, and many a times a mysterious batch of symptoms didn’t quite seem to have a cohesive answer. But for many years, nothing seemed too terribly off.
Then came college. It only took a few weeks of drinking watered down, highly-processed cheap beer and eating dining hall food for my health (and life) to take a dramatic turn.
Not only was my physical body starting to react in strange and uncomfortable ways, but emotionally and mentally, I was entering a dark and unknown territory. At first, I chalked it up to being away from my mom and my comfortable home environment. But it didn’t seem like any of my fellow students were suffering from the hours of hysterical tears and pain I was experiencing.
I became deeply depressed and ashamed. All day long, I walked around uncomfortable in my own body. I was sluggish and foggy every single day, and eating meant an immediate trip to the bathroom, which was not always convenient in crowded dining halls miles away from my dorm.
At first, I thought it must be some kind of unknown cancer slowly taking over my body from the inside out. I felt like I was going insane from a pain I did not have the words to describe. My joints hurt, my stomach was distended, my lymphnodes were permanently enlarged, migraines plagued my days and nights, I couldn’t sleep, and my hair was falling out by the handful.
I visited a number of doctor’s offices, emergency rooms, and specialists, but nobody seemed to have an answer. My tonsils were taken out; I was prescribed pills for acid reflux; I had a rare type of strep throat that lasted for 6 months; codeine was prescribed to help with the lack of sleep; more pills were handed to me for mood imbalance and depression; the muscles around my heart were so swollen that I felt shooting pains down the sides of my body that felt remnant of a heart attack; I was given an inhaler and told I had asthma; I was tested for lupus for the intermittent rashes covering my face. It was awful. I never wanted to get out of bed. Nobody seemed to be listening to what I was saying. Or maybe they were and I was just literally losing my mind.
The summer after my most excruciating first two years in college, I finally saw a specialist who took a biopsy of my stomach lining. Waking up strapped to a table with a tube down my throat was by far not my coolest life experience, but what the doctor was able to tell me after the results came in is one of the most significant moments of my life thus far.
The words “Celiac disease” were a blessing and a curse. Even though I had absolutely no idea what he was talking about, I felt a wave of gratitude and relief wash over me. It was all real. Everything I had felt in my body was not in my head after all; the pain was not phantom, but real. I was not insane. So I left the specialist’s office and went home to enjoy a piece of gluten-packed carrot cake. This moment of pleasure was followed by violent illness.
The specialist later told me my test results showed that the lining of my stomach and intestines no longer existed and that the villi lining my intestinal tract that were supposed to break down my food and absorb my nutrients had instead been destroyed by my own immune system.
I was completely clueless; it was not a word I had ever heard before. Papers and pamphlets were handed to me along with extensive lists of what not to eat. But nobody told me what I could eat, what I should eat to repair the damage to my digestive system. And it took me years to discover that food as a healing mechanism - as medicine - was even a thing.
The solution, as I was told, was to simply avoid gluten at all costs. So I had to memorize a list of foods (bread, cookies, cake, pizza, crackers, etc.) that I was not allowed to eat, paired with a list of long words that are secret code names for gluten. No eating out. No dining hall. College budget.
It all seemed impractical. But once I started down the path of eliminating gluten, it was easy to see how I was affected by this wheat protein. Less than an hour after accidental consumption and it would feel like someone was twisting my organs like spaghetti noodles on a fork. I would sit there rocking back and forth, doubled over in pain that I just had to wait out. I would be immobilized for days or weeks and the symptoms would return.
Dazed and disoriented about what was real anymore, the memory of what it felt like to be happy lost in the distance, I stumbled on through life, recklessly at best. I dropped out of school. I was still in a place in body and mind where I had no idea what was going on, no idea who to turn to, and no idea how to even find words to communicate. I felt defeated.
Finally, I woke up one day, two years after my diagnosis, ready to take responsibility for my life. I was tired of waking up feeling like shit, and tired of seeking answers from people outside of myself. I dove into holistic health head first: acupuncture, massage, yoga, crystal healing, sound healing, meditation, artistic expression, mindful eating, shamanic ceremonies, organic whole foods, ayurveda. I was determined to find my own answers.
Answers don’t always come overnight. Instead, they often come in a slow trickle. The more I knew, the better choices I could make, and the accumulation of those choices brought me closer and closer to more fully being able to embody the fullness of myself. I started waking up with energy, able to enjoy eating again, comfortable enough to move my body through a gentle yoga practice.
Ten years into my diagnosis, I am finally starting to get a handle on it. My diet is not perfect and there are still some days that don’t go so well for me. But research is now showing that Celiac can mean intolerance for all grains, and cutting all grains out of my diet entirely made all the difference. It’s a difficult diet to maintain when time is short. So: minimal grains, organic food, nothing processed, cooked vegetables, cold-pressed juice, lots of loving and healing energy.
Elimination. I stick to eating a diet of foods I know I can eat without experiencing physical pain afterwards. I choose high quality, organic ingredients free of words I do not recognize as edible. Our bathroom at home is filled with organic, natural skincare products. I pack my diet full of life-giving energy, and I maintain a physical exercise regimen that is easy going on my systems and keeps me moving. I surround myself with loving friendships, partnerships, my dog, and my family. With thoughtful planning, I can travel freely and not panic when it comes to finding food. I intentionally set myself up so that my entire life is integrated into and positive for my well-being.
I am not defined by a diagnosis, but I happily accept it as a factor of life that has shaped the woman I am growing into. Celiac opened my eyes, my heart, and my soul to experiencing life to its fullest. Years later, I am teaching yoga and aerial yoga while operating an organic juice bar with the love of my life. That little protein of gluten has revealed patience, forgiveness, and compassion to me on a whole new level.
This journey hasn’t always been graceful or easy. It has taken me years to get where I am and years more to get where I am going. I now know what it feels like to be truly alive and I couldn't be more grateful.