Progression of Illness

photo-1-progression-of-illnessMy name is Jana Smith. I offer this story of personal hope and recovery as a testimony to those who are struggling with their health. I had a growing list of health challenges when I found the concept of gluten intolerance in 2009. I believed that gluten was the missing piece in the puzzle, and that removing it would solve an assortment of issues. After I removed gluten and many other foods, and failed to fully recover, I concluded I must be super sensitive, and went to great lengths to avoid cross contamination of gluten in my diet and personal products. However, I still did not get well. Nothing offered hope until I found the Dynamic Neural Retraining System, an online instructional video program in 2013.

Photo1.2

Before DNRS, 2012

My full list of diagnoses made by medical professionals:
Hypoglycemia
Vitamin Deficiencies
Atopic Dermatitis
Sebhorreic Dermatitis
Dandruff
Environmental allergies (dogs, cats, pollen, mold, dust, etc.)
Tree nut allergies
Depression
Irritable Bowel Syndrome
Gastroesophageal Reflux Disease
Low Testosterone
Migraine Headaches
Chronic Pain
Gluten Intolerance
Small Intestine Bacterial Overgrowth

I also had Multiple Chemical Sensitivities and textile sensitivities but did not pursue diagnoses for these conditions. Praise to God and thanks to the tools from the Dynamic Neural Retraining System video program, I am now healthy, thriving and enjoying my life!

My health problems began early in life without a clear trigger. I had rashes, frequent ear infections and reactions to new foods before one year of age. At one and a half, I developed immediate hives from wearing a brand new, unwashed shirt. When I was four years old, my mom began to seek answers to my frequent unprovoked tantrums. She knew something was not quite right with me, but there was nothing obvious or specifically wrong. The tantrums began, as is common, around age two, but I did not grow out of them. She took me to a Naturopath, who diagnosed me with Hypoglycemia and vitamin deficiencies. The recommendation was to change my diet to exclude sugar and refined carbohydrates, and to include frequent small meals. My mom also tried removing peanut butter and dairy, but in the end, these went back into circulation.

From fairly early on, I recall feeling anxious from time to time, but did not understand or have the ability to describe my feelings. In anxiety, I acted out in anger or tried to control those around me and my environment. I presented with behavioral issues that would pop up seemingly out of nowhere, and vanish again. I worked hard to keep it together in public and was angelic outside of the home. I made friends easily and excelled in school. I would only act out or fall apart emotionally in the safety of our home.

I experienced intermittent intense heartburn as a very small child, but I did not know what it was and thought it meant I was hungry, so I would ask to eat. I developed reactions to a variety of tree nuts around age 6. I also dealt with occasional stomach aches. In junior high, this spiked and I began taking fiber supplements. This seemed to manage the issue adequately.

The occasional anxiety from early on continued at a low level as I grew and developed. My skills for managing and coping grew to include working hard to make sure my blood sugar didn’t drop and making sure I had enough sleep, and trying to be good at whatever I did. Adrenaline fueled my performance in school, and by my junior year in high school it began to wear thin and I felt depressed. All the hard work at school, on the debate team, on my competitive cheer leading team, and on the violin, just felt like pressure and I didn’t feel like doing anything anymore. I went to see a counselor and around the same time, my doctor prescribed anti-depressant medication. That year, I met my future husband, and that did more to cheer me up than anything else.

I continued on to college and really enjoyed this time in my life. I still felt the adrenaline-driven motivation to perform and worked hard in my classes. I wasn’t overwhelmed and I did not have too much work to do, but I felt the constant internal pressure and intensity about doing well in school. This began to present as digestive distress. My stomach hurt and I sometimes couldn’t eat. I tried removing dairy, and that changed nothing. My symptoms continued for several months. At age 21, I went to a gastroenterologist. He ran tests and diagnosed me with irritable bowel syndrome (IBS). His main advice was to reduce the stress in my life. This was ironic, because it was the best of times. I didn’t have a reason for feeling stressed. My class load was just right, I was a happy newlywed, and we lived near all of our wonderful college friends, so we had an engaging and satisfying social life. I just couldn’t shake the adrenaline.

The stomach issues led to weight loss and progressed to muscle loss, weakness, hair loss, tiredness and depression. My gynecologist checked my thyroid and it was normal. After some research, I asked her to check my testosterone level, and it was undetectable. She was very surprised and had not seen a level this low. She prescribed a supplement, and over the next several months I bounced back to health. I gained weight, strength and motivation. This was an extremely effective band aid.

I went on to complete my Masters in Teaching Health Education and pushed through two intense years of teaching high school. Being a new teacher is a challenge! I was on my feet, on my toes, and pushed to the very limit of my ability. I pressed on, and the success felt great!

We decided to move and start a family, so I resigned from my position and got pregnant with my first child. Before pregnancy, I had to stop taking the testosterone supplement. This was when everything began to catch up with me. Pregnancy was not easy. My blood sugar was low all of the time and I slept and ate around the clock. I thought things would get better when the baby came, but I did not bounce back this time. Anxiety and depression crept back and intensified after birth. When my daughter was 3 weeks old, she began to have severe digestive difficulty and she developed a full body rash. She was diagnosed with eczema. Online research and talking to other moms led me to pull foods from my diet that could be affecting my nursing baby. Taking out dairy cleared her rash, and that began a seven year process of elimination diets and exploration of food sensitivities.

When I tried introducing solid foods, my daughter had more rashes and more digestive problems. I was unsuccessful at finding something she could eat. She eventually flatly refused all solid food. I took her to two different gastroenterologists in search of a diagnosis and support. They had nothing to offer, and they encouraged me to keep trying to offer food until I found something tolerable. I found nothing. I eventually put her on a hypoallergenic elemental formula and she improved dramatically. She was okay, and I was okay, so my husband and I had another child. My second daughter followed the same progression, so I switched her to formula too. Once she weaned, my health crashed.

Jana kids

Here is a photo of me from 2008 when my health was declining rapidly

I began having migraines, then constant headaches with migraine episodes, then body aches, and then chronic pain. I began searching more earnestly for answers. I went to a neurologist for help with migraines, and she had me try three different preventative medications. Each one made the migraines more frequent, and the final medication gave me “brain zaps”, which felt like mild electric shocks. The drug they gave to halt migraines consistently caused a rebound the next day. I quit trying any more migraine medications when my migraines increased to once daily. The doctor offered pain medications. I tried these twice and turned down all medication after that.

When my daughters were one and three, I came to a possible solution for all three of us. I learned about Celiac and gluten sensitivity and pursued testing. The results showed that my three year old and I were both gluten intolerant. My one year old was too little to test. Research on the internet and support forums led me to believe that this was the cause of my various health issues. IBS, heartburn, vitamin deficiency, hormone imbalance, anxiety, depression, and trouble sleeping could all be explained by gluten intolerance! I could also conclude that gluten cross contamination kept my daughters from tolerating the foods I tried to introduce.  I gave full attention to learning about gluten and changing our lifestyle. My motivation surged as I found hope in this new focus. I tried to eliminate all sources of exposure and monitored our diet carefully.

During the first year of our gluten free journey, my health declined even more. Daily migraines increased to three episodes per day. I hired a college student to watch my girls three mornings a week. I paid someone to clean my house. My mom came two days a week to help with the girls and with food preparation. My husband came home early often, and began cooking for himself.

Photo3

I am smiling, but you can tell from my eyes that I am not well.

I looked to alternative providers for help with the chronic pain and migraines. A physical therapist and chiropractic team worked on my body for four years. This offered temporary relief, for a day or two after treatment, but it did not fix the root problem. I also went to a Doctor of Osteopathy, who worked on releasing tight areas in my muscles. I saw a Functional Medicine nurse practitioner and was diagnosed with Small Intestine Bacterial Overgrowth (SIBO). I followed the treatment protocol and saw a small improvement for a time.

During my attempts to figure out this seeming super sensitivity to gluten, I began to experience other sensitivities in my body. I developed MCS (multiple chemical sensitivity) and textile sensitivity. These limited where I could go and what I could wear. An exposure to fragrance would bring on a migraine, and an exposure to synthetic fabrics would make my skin break out into a rash. I stayed home whenever possible and purchased a mask to wear for required outings.

As I continued to press into the gluten intolerance concept, and various dietary offshoots (such as grain free, paleo, etc.) I came to the conclusion that I needed to have a clear way to test which foods were working for me because I was constantly ill. I pared my diet down to two foods, plus olive oil, with the intention of adding back one food at a time. This failed. I couldn’t add anything except salt, without symptoms. I didn’t know if it was the foods themselves or gluten contamination that was impacting me. Cross contamination is nebulous, and it can happen any time during the food production cycle (for example, potatoes can be stored in wheat straw). I thought that if I could control our food from farm to table, I would know which foods I could tolerate. We bought property, built a house, and began to grow our own food.

Before we moved to the farm, a friend from an online support forum forwarded an email about DNRS. This was the first time I heard about the program. I looked at it and thought it sounded too good to be true. I also felt compelled to try growing my own food so that I could know for sure whether or not this was at the root of our issues.

After we moved, my daughters were old enough to both be in full time school, so I had more time to rest and heal. I had a chemical and gluten free home. We lived on property, away from fragrances and other houses, so I could go outdoors freely. We were eating food exclusively from our own farm.

Photo4

I am learning to drive the tractor so I can help grow our food.

Photo4_2

Here is a handful of buckwheat we had just harvested. It is ready to be processed…a time consuming task!

Photo4_3

This is the seed cleaner that my husband designed and built himself so we could sort and process the buckwheat without sharing the equipment with wheat.

Photo4_4

I am watering the rows of potatoes to keep them alive until we can install a watering system.

All of my variables were finally under control. I was much improved from my days of daily migraines, but I was not well… still. The MCS was at its peak. We were eating a very limited diet, and I still experienced digestive struggles. I had chronic pain and frequent headaches. My time was spent trying to feel better and make it through the day. I wanted to know why I was not better.

photo5.1

Here is a photo of me in the kitchen, where I spent over five hours per day cleaning, processing, prepping and cooking food for myself and the girls.

Photo6.1

In this picture I am sorting millet to remove any stray gluten grains before washing, cooking and serving it. I am sitting on a gray plastic seat to help with hip pain and I am dressed in all cotton to avoid breaking out into a rash.

So far no doctor, specialist, counselor, wellness plan, elimination diet, chiropractor, naturopath, medication, supplement or any other resource I could find explained what was going on or offered effective treatment. We had spent over $30,000 out of pocket during the years 2010-2013 on my medical treatment. There was little hope if this was as good as it could get.

Continue on with My Healing Journey.