Sunday, December 6, 2009

My Story

I'm grateful that in High School I had TONS of energy and was involved in as much as I could possibly fit into my schedule. It was knowing "who Steff Schutz" really was that helped me keep seeking answers - when the doctors were giving me answers that didn't help me solve my health issues.

So...the problem began at BYU when I began to experience fatigue and difficulty thinking. I remember walking down the steps south of campus where I sat down and cried realizing I wasn't able to retain information....and knew there was something wrong with my mind...

To save time I'll skip ahead...

I served my Mission in Osorno, Chile - without much difficulty, but towards the end of my mission I REALLY began to experience fatigue. My ability to speak Spanish was effected as was my ability to even walk down the streets. Don't take me wrong - I worked HARD and was DEDICATED....just really emotional in the process. I had the most success those last few months - probably due to the humility and faith necessary just to simply walk or talk - I relied heavily on the Savior.

Anyway...upon returning home I attempted to work 20 hours and go to school full-time just like I did before the mission, but found for some reason I couldn't process and handle things mentally. So...gratefully with Grandparent support, and sucking in my pride I had to make some choices... instead of my dream of dancing professionally and finishing my dance degree, and on to my Masters Degree, I started taking Communication Classes (towards a Marketing Communications Major), I had to stop teaching at the MTC and I had to give up dancing with my dream dance company (Deseret Dance Theatre) while I went from Dr. to Dr. trying to figure out what was wrong with me.

Diagnosis....

Epstein Barr....
Chronic Fatigue...
Fibromyalgia...
Depression...

But there was something inside that told me this wasn't right...my health continued to decline to where I had to keep dropping classes until finally one day my Dad and Brother had to come pick me up at my apartment and I had to leave the University with only 2 semesters to go... as a Dance Major.... I remember being carried out to the car...and remember the tears shed as the things in my room were packed up.

At times I felt like a total hypocrite because I would have days where I'd feel fine....then two weeks at a time totally bed ridden....I looked sick...I had no energy and it went on like this for a long time.

My parents were debating putting me on welfare and I made the decision to do away with any type of physical exercise that wasn't necessary and focused on keeping a job. Unfortunately because of my off again on again days of health my job suffered and I worried about being fired. Then...one day a friend suggested I fasted and pray so that I could figure out what was wrong with me - and I did. A couple days later there was a daughter of that same friend who was visiting with her husband from out of the country. She, upon learning my history, told of her brother-in-law who had the exact same experience and his Dad was a Doctor, but it took them 2 years to figure out that he had developed an intolerance to Gluten....Celiac Disease. She wrote her brother in law and he graciously sent me some Celiac literature and when I started to avoid the "Bad Foods" I was fine. I remember getting sick accidentally on "Postum", on "Cottage Cheese", soy sauce, on Chips, Jerky....gum...it was crazy! There was gluten in everything!

Two months later I met my future husband and thanks to his help and the support of his wonderful Grandmother Jean....we enrolled me in a "Celiac Support Group" and it is there that I attained the information that got my life back. Gluten is in pickles, condiments, yogurt, sour cream, and conveyor belts are floured and frozen juice cans are floured so even if certain packages of food don't list any ingredients are bad - they are may not be on the safe list. There are websites, software, books, pamphlets all dedicated to helping the Celiac Navigate through the gluten filled stores.

I was taught to eliminate foods if I got sick and then slowly introduce foods until I found the cause. One time I was sick for two weeks and I was only eating corn tortillas and cheese. I called the head of the SLC support group and said through my tears "I don't have this stupid illness....all I'm eating is corn tortillas and cheese and I'm still sick." The kind woman had me look at the type of tortillas and cheese....come to find out both the cheese and the "Mama Maria Tortillas" had Gluten in them.

It took about 6 years before I wasn't getting sick on accident. A salad dressing had me sick for nearly 6 months before I figured that one out. Soy milk...kept me out of church for nearly 2 months until I discovered that one. So....to make a long story short - let's just say I tired of eating things that were "iffy"....and wasted my life. I began to eat foods that were "naturally gluten free" or had a gluten free certification on it. (This isn't entirely fool proof either - I'll explain later).

THE NEW SYMPTOMS

So after being healthy, dancing with Deseret Dance Theatre through 3 pregnancies and healthy births, I was pregnant with child number four and all of a sudden my being able to go to the gym everyday - and working with a personal trainer two of those days, I began to go less and less until I didn't have any strength at all. It wasn't gluten...this was something worse.

The symptoms worsened....

Blind in one eye....face would go numb...my right arm would go numb. I was in and out of the emergency room.

I would all of a sudden loose my strength and my kids would have to call a neighbor to help me back into bed.

The most terrifying experience was when I would go paralyzed. I couldn't move, couldn't communicate...couldn't process a thought.

One night as I lay in bed the paralyzing feeling was so severe that I couldn't call out for help. I couldn't cry....I was aware I was in trouble, but couldn't even process a thought to know what to do....I could only wait. When the paralyzing feeling left I quickly got to my knees and pleaded with the Lord that I had learned humility and had compassion for others and pleaded for an answer.....and that answer came the very next day.

I was driving with my two small kids - really apprehensive to do so given my past experiences going paralyzed or losing my vision and family had to come rescue me, but I drove none the less - I was numb....not really knowing where I was going. Somehow I ended up on 800 North in Orem, UT in front of Real Foods Market. There was a familiar face inside the store and so I wandered in. The woman, I knew vaguely, introduced me to the book "Nutritional and Physical Degeneration" by Dr. Price. It was somewhat surreal...the store looked so vacant...as there was hardly any food in it...and a tiny library....I purchased the book...walked out of the store and after reading the book in a few days I knew my life had changed forever as well as a hidden resentment I had towards God for the health issues I saw in the people in Chile...because of what I felt was because they didn't have modern medicine.....now I know it was because they were not eating as God intended.

To make another long story short....I read 11 of their books in two months and due to what I read I took absolutely everything considered "processed food" out of my house into large boxes and called my brother to come get the food - feeling guilty that he would be eating it when I considered it the cause of my sickness.

I would buy raw milk from the store and when I drank the cream that was on top of the milk I could feel my entire body shiver as if every cell were screaming "healthy fat!...Oh how we have needed healthy fat". I was pregnant and seriously would drink straight from the gallon jug....a cream mustache when I was done. I wasn't worried about gaining weight - only getting healthy and keeping my baby healthy. Later I would learn how a "lack of fat" and lack of proper vitamins and minerals was keeping weight on me and the processed starch sugar was the cause- not the healthy fat. A life of being a "wanna be" anorexic looking dancer had left me eating food deprived of fat and vitamins and minerals. I replaced processed sugar for molasses, Agave, Stevia and raw honey. We replaced our store bought milk products with fresh raw milk and cheese from Real Foods Market. I bought their whole wheat bread for my kids and husband and relished in all the products there that were "naturally gluten free". I eliminated scavenger meat and seafood from my diet. (We only eat pork and sea food a couple times a year now). We learned to make butter from the cream on the milk....we made curd cheese, buttermilk, yogurt....I felt so empowered and knowledgeable. We bought fresh organic produce and I was amazed at how delicious the fruits and vegetables were when they were organic. We cherished the food and ate it with an almost reverence. We made soups and meals from delicious organic foods.

My kids didn't miss a single day of school that year, my husband stopped coughing up his tonsil rocks (whatever they are called)...and suddenly he went from saying he had "food poisoning" all the time (from eating out while working)...he ate the fresh salads and soups from Real Foods Market and went from looking "pasty" in his face to having a "healthy glow".

Another summary.......

I had been on a 4 month waiting list to see the MS Expert - due to how similar my symptoms were to Multiple Sclerosis. I've got the bill from the Neurologist to prove that my symptoms went away after 3 months of eating the "Real Foods Way" and didn't need to go to the MS expert. I cancelled my appointment and have been symptom free as long as......I stay away from processed food.

In one of the books I read it talked about something very important that I hope ALL Celiacs will pay attention to. It said CELIACS WHO CONTINUE TO EAT GLUTEN-FREE FOODS THAT ARE HIGHLY PROCESSED HAVE A TENDENCY TOWARDS MULTIPLE SCLEROSES....AND IT LISTED other diseases such as dementia, schizophrenia, diabetes, etc.....the list was long. You can read this in "Nourishing Traditions" by Sally Fallon.

I'd like to say that I consider my getting sick a huge blessing. Each time I've faced a health problem, we've prayed for knowledge and have been greatly blessed with the knowledge gained. At one time, while living in BYU just east of Liberty Square, I was given a blessing from my Bishop. He said that I needed to understand the Word of Wisdom and said that the knowledge I gained I would be able to share with the World someday. At the time I reluctantly thanked the Bishop, shook his hand and watched as my friends went to Moab on an Activity while I crawled back in bed....I was heart broken. There was so much "Life" I was missing. That little girl who my Mom described as "the one she'd have to throw her leg over so that I'd take my nap", was so in love with life as a child would lay on the bed obediently with my eyes open until finally my Mom gave up on naps entirely. After reading "The Word of Wisdom - a Modern Interpretation" I realized that I hadn't paid attention...I hadn't listened...I had to read it from others, but now I understand and apply the knowledge gained and perhaps someday I'll be able to share Celiac Shack with the World. =)

With love and light,

Steff England

No comments: