My Story

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 my knowing who “Steffanie" 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....I had difficulty remembering my own choreography...

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.

Upon returning home from Chile, after serving there for a year and a half, 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 master’s degree, I started taking communication classes towards a marketing communications major. I had to stop teaching spanish at the MTC and I had to give up performing with Deseret Dance Theatre while I went from Dr. to Dr. trying to figure out what was wrong with me.

Diagnosis....

Epsteinbarr....
Chronic Fatigue...
Fibromyalgia...
Depression...

But these diagnosis's didn't sound right to me.  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 until finally one day I overheard my parents talking about whether or not they would need to have me apply for welfare.  Oh no! I quickly 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.

One day, my friends dad made the suggestion to fast and pray so that I could figure out what was wrong with me. That was such a new concept for me to hear.  I had been searching for "the right Doctor" to find out what was "wrong with me".  I had plenty names to describe the symptoms, but no answers to HOW I could recover my health. So, I did as my friend's Dad suggested. A couple days after fasting I met a woman who would give me the answers I had been looking for.  She, upon learning my history, told of her brother-in-law who had the exact same experience as I had.  This individuals father 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! 

I'll never forget the response of my Dr. when I told him about what I had been doing and how I finally felt better.  He threw his hands up in the air with excitement and said "Finally! We have an answer!"  I had began thinking that the Dr. had given up on me and that he was beginning to think the illness was just made up in my mind. (He was one of a dozen other doctors / specialists I had seen throughout the years).  I remember him telling me "I could have you tested, but you would have to go back on gluten and it would make you sick again".  I'll talk later about my journey of trying to be officially 'diagnosed' and finding out we had a history of celiac disease on both sides of the family line later in this blog, but for the first time in several years, being on a gluten-free diet, I FINALLY felt like 'Steffanie' again.

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 may or 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. I called the head of the Salt Lake City Celiac Support group and she discovered it was the tortillas and cheese I was using that was making me sick.  The tortillas were from a company that floured conveyor belt with wheat flour and the cheese coloring had gluten in it.

Note:  I eat only raw cheese now and only sprouted organic, non-gmo corn tortillas.  I eat both very sparingly.  Now if I have to eliminate a suspecting food, fruits and veggies, nuts and seeds are what I eat only.

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, but this isn't entirely fool proof either.

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 lose 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... 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. There was hardly any food in it. There was 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 and I no longer had a hidden resentment 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 knew it was because they were not eating food 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 craved learning about natural health and continued to read other book after book after book, eventually enrolling in school and becoming a nutritional herbalist. 

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 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.  I replaced processed sugar for molasses, 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) to being symptom free.  He ate the fresh salads and soups from Real Foods Market and went from looking "pasty" in his face to having a "healthy glow".

Important note:  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 EVERY Celiac will pay attention to. It said CELIACS WHO CONTINUE TO EAT GLUTEN-FREE FOODS THAT ARE HIGHLY PROCESSED HAVE A TENDENCY TOWARDS MULTIPLE SCLEROSES. IT LISTED other diseases such as dementia, schizophrenia, diabetes, etc.....the list was long. In "Nourishing Traditions" by Sally Fallon she lists various scientific research that has proven this fact. 

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.  A leader once told me that one day the knowledge I gained, I would be able to share with the World. At the time, I reluctantly thanked the Bishop for his blessing, shook his hand and watched as my friends went to Moab on an Activity. When everyone left, I literally crawled up the stairs to my room. I was heartbroken. There was so much "life" I was missing. 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,

Steffanie

4 comments:

Anonymous said...

New studies at stanford university show that enzymes are the answer for gluten intolerance. Good to know that you are on the path of recovery through no processed foods. That is the way to go. I'm sure that you know this by now, but you were in a candida state and that is due to mostly digestion and colon health plus the foods that you were eating. After getting the colon cleansed, digestion back to normal and eating foods not processed one can get back to eating non-processed, non gmo, and organic grains that do contain gluten with proper enzymes stability. Many have done it and have seen fantastic results as you have. Processed foods are the killer. Fresh made foods are the key. Thank you for sharing

Lorynn said...

That is an amazing story. It is very similar to what I have learned and lived through with my son. What a road to travel. That is so wonderful that you had your families support. We now have a great advantage, knowledge!
Lorynn

Steffi said...

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!

Steffi said...

Anonymous, Some of the major changes to the way I ate had to do with getting foods that had their natural enzymes. Raw milk still has it's digestive enzyme, the vegetables are preserved using fermentation, the grains are sprouted etc. Beet kvass is an incredible blood cleanser and tonic. Sprouted breads, cultured dairy products like keifer, buttermillk, yogurt etc. When I travel, there is a digestive enzyme blend (not gluten free) that I use when someone serves me healthy food that I know has gluten in it. Years past I could have never done this, but it is so nice having a gut that is healed to the point that I can take a digestive enzyme and know that I will be able to still give the scheduled lecture without being bedridden. Thank you very much for your comment. Yes, processed foods and genetically modified foods are indeed the killers. Thank goodness we still have access to REAL foods. I hope more people educate themselves and support laws that give us more FOOD freedoms to keep it real.

Would love to hear more from you.

- Steffanie