My Story
The long road to feeling like “Steffanie” again.
In high school I had boundless energy and packed my schedule with everything I could possibly fit into it. I mention that because knowing who “Steffanie” really was — that bright, capable, full-of-life girl — is what kept me searching for answers later, when doctor after doctor handed me explanations that never actually helped.
The First Symptoms
It started at BYU. Out of nowhere I began to feel exhausted and foggy. I still remember sitting down on the steps south of campus and crying, realizing I couldn’t retain what I was studying — I was even struggling to remember my own choreography.
I served my mission in Osorno, Chile, and for most of it I was fine. But toward the end the fatigue crept back in. My Spanish faltered; some days even walking down the street felt like a mountain. I worked hard and stayed devoted — emotional in the process, yes — and strangely, those last few months were my most fruitful, maybe because it took such humility and faith just to put one foot in front of the other. I leaned on the Savior in a way I never had before.
I came home after a year and a half and tried to pick up right where I’d left off — working twenty hours a week and carrying a full course load. But my mind simply wouldn’t cooperate anymore. So, with my grandparents’ support and a good deal of swallowed pride, I made some hard choices. Instead of finishing my dance degree and chasing my dream of dancing professionally and earning a master’s, I shifted toward marketing communications. I stopped teaching Spanish at the MTC. I gave up performing with Deseret Dance Theatre. And I went from doctor to doctor, trying to find out what was wrong with me.
A Pile of Names, No Answers
The labels came one after another:
Epstein-Barr. Chronic fatigue. Fibromyalgia. Depression.
None of them sat right with me. My health kept sliding. I had to drop class after class until, with only two semesters left in my dance major, I couldn’t continue. My dad and brother came to pick me up at my apartment — I remember being carried to the car, and the tears as my room was packed up around me.
There were stretches where I felt like a hypocrite: a few good days, then two weeks flat on my back, bedridden. I looked sick. It went on like that for a long time — long enough that one day I overheard my parents quietly wondering whether they’d need to help me apply for welfare. That stopped me cold. I cut out every bit of physical activity that wasn’t strictly necessary just to hold onto a job — and even then, my on-again, off-again health made me afraid of being let go.
The labels came one after another:
Epstein-Barr. Chronic fatigue. Fibromyalgia. Depression.
None of them sat right with me. My health kept sliding. I had to drop class after class until, with only two semesters left in my dance major, I couldn’t continue. My dad and brother came to pick me up at my apartment — I remember being carried to the car, and the tears as my room was packed up around me.
There were stretches where I felt like a hypocrite: a few good days, then two weeks flat on my back, bedridden. I looked sick. It went on like that for a long time — long enough that one day I overheard my parents quietly wondering whether they’d need to help me apply for welfare. That stopped me cold. I cut out every bit of physical activity that wasn’t strictly necessary just to hold onto a job — and even then, my on-again, off-again health made me afraid of being let go.
An Answer to a Fast
One day, a friend’s dad suggested I fast and pray to find out what was wrong. It was such a new idea to me — I’d spent years searching for the right doctor when what I needed was a different kind of answer. So I did as he suggested. A couple of days after my fast, I met a woman who would change everything.
When she heard my history, she told me about her brother-in-law, who’d been through the exact same thing. His own father was a doctor, and even he had taken two years to discover the cause: an intolerance to gluten — celiac disease. She wrote to her brother-in-law, who kindly mailed me some celiac literature, and when I started avoiding the “bad foods,” I was fine. I got sick on the strangest things along the way — Postum, cottage cheese, soy sauce, chips, jerky, gum. Gluten was hiding everywhere.
I’ll never forget my doctor’s reaction when I told him what I’d figured out and how much better I felt. He threw his hands in the air and said, “Finally! We have an answer!” I’d started to fear he’d given up on me, that he thought it was all in my head — he was one of a dozen specialists I’d seen over the years. He offered to test me officially, but warned that I’d have to go back on gluten and make myself sick again to do it. (I’ll share more later about my road to an “official” diagnosis, and discovering celiac on both sides of my family.) For the first time in years, gluten-free, I finally felt like Steffanie again.
One day, a friend’s dad suggested I fast and pray to find out what was wrong. It was such a new idea to me — I’d spent years searching for the right doctor when what I needed was a different kind of answer. So I did as he suggested. A couple of days after my fast, I met a woman who would change everything.
When she heard my history, she told me about her brother-in-law, who’d been through the exact same thing. His own father was a doctor, and even he had taken two years to discover the cause: an intolerance to gluten — celiac disease. She wrote to her brother-in-law, who kindly mailed me some celiac literature, and when I started avoiding the “bad foods,” I was fine. I got sick on the strangest things along the way — Postum, cottage cheese, soy sauce, chips, jerky, gum. Gluten was hiding everywhere.
I’ll never forget my doctor’s reaction when I told him what I’d figured out and how much better I felt. He threw his hands in the air and said, “Finally! We have an answer!” I’d started to fear he’d given up on me, that he thought it was all in my head — he was one of a dozen specialists I’d seen over the years. He offered to test me officially, but warned that I’d have to go back on gluten and make myself sick again to do it. (I’ll share more later about my road to an “official” diagnosis, and discovering celiac on both sides of my family.) For the first time in years, gluten-free, I finally felt like Steffanie again.
Learning to Live Gluten-Free
Two months later I met my future husband, and with his help — and the support of his wonderful Grandmother Jean — I joined a celiac support group. That’s where I gathered the knowledge that gave me my life back. Gluten hides in pickles, condiments, yogurt, sour cream; conveyor belts get dusted with flour; even frozen juice cans can be floured. A package can list nothing alarming and still not be safe.
I learned to eliminate a food when I got sick, then slowly reintroduce things until I found the culprit. Once I was sick for two full weeks; I called the head of the Salt Lake City celiac support group, and she helped me trace it to my tortillas and cheese — the tortillas came off a wheat-floured conveyor belt, and the cheese coloring contained gluten.
It took about six years before I stopped getting sick by accident. A salad dressing kept me unwell for nearly six months before I caught it. Soy milk kept me out of church for almost two. Eventually I grew tired of living on “iffy” foods and losing weeks of my life to them, so I shifted to eating things that were naturally gluten-free, or certified — though even certification isn’t entirely foolproof.
A note: I eat only raw cheese now, and only sprouted, organic, non-GMO corn tortillas — both sparingly. And when I need to eliminate a suspect food, I keep it simple: fruits, vegetables, nuts, and seeds.
Two months later I met my future husband, and with his help — and the support of his wonderful Grandmother Jean — I joined a celiac support group. That’s where I gathered the knowledge that gave me my life back. Gluten hides in pickles, condiments, yogurt, sour cream; conveyor belts get dusted with flour; even frozen juice cans can be floured. A package can list nothing alarming and still not be safe.
I learned to eliminate a food when I got sick, then slowly reintroduce things until I found the culprit. Once I was sick for two full weeks; I called the head of the Salt Lake City celiac support group, and she helped me trace it to my tortillas and cheese — the tortillas came off a wheat-floured conveyor belt, and the cheese coloring contained gluten.
It took about six years before I stopped getting sick by accident. A salad dressing kept me unwell for nearly six months before I caught it. Soy milk kept me out of church for almost two. Eventually I grew tired of living on “iffy” foods and losing weeks of my life to them, so I shifted to eating things that were naturally gluten-free, or certified — though even certification isn’t entirely foolproof.
A note: I eat only raw cheese now, and only sprouted, organic, non-GMO corn tortillas — both sparingly. And when I need to eliminate a suspect food, I keep it simple: fruits, vegetables, nuts, and seeds.
Something Worse
After years of health — even dancing with Deseret Dance Theatre through three pregnancies and healthy births — I was expecting my fourth child when my strength began to slip again. I went from the gym every day, with a personal trainer twice a week, to less and less, until I had nothing left. This wasn’t gluten. This was something far more frightening.
The symptoms escalated: blindness in one eye, my face going numb, my right arm going numb. I was in and out of the emergency room. I’d suddenly lose all my strength, and my kids would have to call a neighbor to help me back into bed.
The most terrifying part was the paralysis — I couldn’t move, couldn’t speak, couldn’t hold a thought. One night it gripped me so completely that I couldn’t call out, couldn’t even cry. I knew I was in trouble, but I couldn’t form the thought of what to do. I could only wait. When it finally passed, I got to my knees and pleaded with the Lord — I told Him I’d learned humility, that I’d grown in compassion, and I begged for an answer. It came the very next day.
After years of health — even dancing with Deseret Dance Theatre through three pregnancies and healthy births — I was expecting my fourth child when my strength began to slip again. I went from the gym every day, with a personal trainer twice a week, to less and less, until I had nothing left. This wasn’t gluten. This was something far more frightening.
The symptoms escalated: blindness in one eye, my face going numb, my right arm going numb. I was in and out of the emergency room. I’d suddenly lose all my strength, and my kids would have to call a neighbor to help me back into bed.
The most terrifying part was the paralysis — I couldn’t move, couldn’t speak, couldn’t hold a thought. One night it gripped me so completely that I couldn’t call out, couldn’t even cry. I knew I was in trouble, but I couldn’t form the thought of what to do. I could only wait. When it finally passed, I got to my knees and pleaded with the Lord — I told Him I’d learned humility, that I’d grown in compassion, and I begged for an answer. It came the very next day.
The Day Everything Changed
I was driving with my two little ones — nervous to be behind the wheel at all, given everything — numb, not really sure where I was headed. Somehow I ended up on 800 North in Orem, in front of Real Foods Market. I recognized a familiar face inside, so I wandered in. The store looked almost empty — barely any food on the shelves, just a tiny library — and the woman I vaguely knew handed me a book: Nutrition and Physical Degeneration by Dr. Weston A. Price.
It felt surreal. I bought the book, read it in a few days, and knew my life had changed forever. A quiet resentment I’d carried toward God — about the suffering I’d witnessed in Chile, which I’d blamed on a lack of modern medicine — simply lifted. I understood it differently now: so much of it came down to food, and how far we’ve strayed from eating the way I believe we were meant to.
I read eleven of their books in two months. Then I boxed up every processed food in my house — big boxes of it — and called my brother to come take it, feeling almost guilty handing him what I now saw as the source of my sickness. I couldn’t stop learning. Book after book after book, until I eventually enrolled in school and became a nutritional herbalist.
I was driving with my two little ones — nervous to be behind the wheel at all, given everything — numb, not really sure where I was headed. Somehow I ended up on 800 North in Orem, in front of Real Foods Market. I recognized a familiar face inside, so I wandered in. The store looked almost empty — barely any food on the shelves, just a tiny library — and the woman I vaguely knew handed me a book: Nutrition and Physical Degeneration by Dr. Weston A. Price.
It felt surreal. I bought the book, read it in a few days, and knew my life had changed forever. A quiet resentment I’d carried toward God — about the suffering I’d witnessed in Chile, which I’d blamed on a lack of modern medicine — simply lifted. I understood it differently now: so much of it came down to food, and how far we’ve strayed from eating the way I believe we were meant to.
I read eleven of their books in two months. Then I boxed up every processed food in my house — big boxes of it — and called my brother to come take it, feeling almost guilty handing him what I now saw as the source of my sickness. I couldn’t stop learning. Book after book after book, until I eventually enrolled in school and became a nutritional herbalist.
Real Food, Real Healing
We traded our store-bought dairy for fresh milk and cheese, and I’ll never forget the cream that rose to the top — the first taste of it, my whole body seemed to respond, as if every cell were thanking me for real, nourishing fat. I was pregnant then, and more than anything I wanted to nourish the baby I was carrying. I swapped processed sugar for molasses, stevia, and raw honey. We learned to make butter, curd cheese, buttermilk, and yogurt ourselves. I cut scavenger meat and shellfish from our table (we eat pork and seafood only a couple of times a year now). We bought fresh organic produce, and I was stunned by how delicious it was — we cherished every meal, almost with reverence, making soups and dishes from real, whole food.
The change in my family undid me in the best way. My kids didn’t miss a single day of school that year. My husband — who used to complain of constant “food poisoning” from eating out for work, and looked pasty and worn — became symptom-free, his face glowing with health, living on the fresh salads and soups we loved.
And me? I had been on a four-month waiting list to see an MS specialist, because my symptoms looked so much like multiple sclerosis. I still have the neurologist’s bill — proof that within three months of eating this way, those symptoms were gone. I cancelled the appointment. I’ve stayed symptom-free ever since, as long as I keep processed food off my plate. I won’t pretend to be the one to explain the science of why; I only know what changed for me.
If there’s one thing I hope every celiac hears, it’s this: going gluten-free is only half the goal. The other half is eating real food. For years I leaned on highly processed gluten-free products, and I never felt truly well until I built my plate around whole, naturally gluten-free foods instead. That’s the difference I felt in my own body, and it’s the heart of everything I share here.
We traded our store-bought dairy for fresh milk and cheese, and I’ll never forget the cream that rose to the top — the first taste of it, my whole body seemed to respond, as if every cell were thanking me for real, nourishing fat. I was pregnant then, and more than anything I wanted to nourish the baby I was carrying. I swapped processed sugar for molasses, stevia, and raw honey. We learned to make butter, curd cheese, buttermilk, and yogurt ourselves. I cut scavenger meat and shellfish from our table (we eat pork and seafood only a couple of times a year now). We bought fresh organic produce, and I was stunned by how delicious it was — we cherished every meal, almost with reverence, making soups and dishes from real, whole food.
The change in my family undid me in the best way. My kids didn’t miss a single day of school that year. My husband — who used to complain of constant “food poisoning” from eating out for work, and looked pasty and worn — became symptom-free, his face glowing with health, living on the fresh salads and soups we loved.
And me? I had been on a four-month waiting list to see an MS specialist, because my symptoms looked so much like multiple sclerosis. I still have the neurologist’s bill — proof that within three months of eating this way, those symptoms were gone. I cancelled the appointment. I’ve stayed symptom-free ever since, as long as I keep processed food off my plate. I won’t pretend to be the one to explain the science of why; I only know what changed for me.
If there’s one thing I hope every celiac hears, it’s this: going gluten-free is only half the goal. The other half is eating real food. For years I leaned on highly processed gluten-free products, and I never felt truly well until I built my plate around whole, naturally gluten-free foods instead. That’s the difference I felt in my own body, and it’s the heart of everything I share here.
A Blessing I Didn’t Understand — Yet
I’ve come to see my illness as a strange and genuine blessing. Every time I’ve faced a health crisis, we’ve prayed for knowledge — and we’ve been given it. A leader once told me that one day I’d share the knowledge I was gaining with the world. At the time I could barely receive it. I thanked the Bishop, shook his hand, and watched my friends head off to Moab for an activity. When everyone had gone, I literally crawled up the stairs to my room, heartbroken at how much life I was missing.
It took me years — and a book called The Word of Wisdom: A Modern Interpretation — to realize I hadn’t been paying attention. I’d had to learn it the long way, through others. But now I understand it, I live it, and maybe — just maybe — that blessing is being fulfilled, one reader at a time. Perhaps someday I really will get to share Celiac Shack with the world. =)
With love,
— Steffanie
I’ve come to see my illness as a strange and genuine blessing. Every time I’ve faced a health crisis, we’ve prayed for knowledge — and we’ve been given it. A leader once told me that one day I’d share the knowledge I was gaining with the world. At the time I could barely receive it. I thanked the Bishop, shook his hand, and watched my friends head off to Moab for an activity. When everyone had gone, I literally crawled up the stairs to my room, heartbroken at how much life I was missing.
It took me years — and a book called The Word of Wisdom: A Modern Interpretation — to realize I hadn’t been paying attention. I’d had to learn it the long way, through others. But now I understand it, I live it, and maybe — just maybe — that blessing is being fulfilled, one reader at a time. Perhaps someday I really will get to share Celiac Shack with the world. =)
With love,
— Steffanie
Comments
Lorynn
It was amazing to hear about your struggles and triumphs with your little boy. I can't imagine what it would be like to see a child suffering so much and to be searching for answers for that child when the "experts" don't have answers that will heal and restore. You are amazing and I am so grateful for the knowledge you have shared with me. Here's to knowledge - the best support I've experienced.
Love ya!
Would love to hear more from you.
- Steffanie