As time passed, I developed into a tall, but thin child. My low weight didn’t make sense because I ate copious amounts of food. During family gatherings, my relatives would frequently comment about my appetite and my aunts marveled at my slim size. Everyone assumed that my slim build was due to my active lifestyle, growth spurts, and perhaps a high metabolism. No one suspected that it was due to a malabsorption issue, likely, because I didn’t have any gastrointestinal symptoms and I was tall. We now know that many people with celiac disease (CD) do not have gastrointestinal symptoms and many are tall, despite the malabsorption problems. Not everyone with CD has short stature.
In addition to the low weight, I would occasionally get pressure and tightness in my chest that was diagnosed as growing pains. Now, I know that this was likely indigestion, a symptom of CD. I also remember having problems with forgetfulness and sometimes it was difficult to think (I call this foggy brain).
With puberty, came anemia, canker sores, restless legs, leg cramps, brittle nails, low blood pressure, more foggy headed days, ovarian cysts, indigestion and I frequently felt an unusual heavy feeling in my abdomen after eating bread or pasta. The symptoms would exacerbate with any physiological or psychological stress. My mother experienced some of the same symptoms for years so I didn’t think it was that unusual. Our doctor prescribed iron pills for our anemia with no further investigations. I now have labeled this, “The Band Aide Treatment”, since it just addresses the symptoms without diagnosing the cause.
As more time passed, I went to university, graduated with honors (a real struggle on my foggy head days), and naturally started to avoid some of the foods (bread, pasta) that sat heavy in my stomach. This helped me to feel better and I didn’t question it further since I assumed that bread and pasta were very filling foods that made most people feel full and tired.
I married and shortly after I became pregnant with our first child. I had anemia and palpitations during the pregnancy. My daughter was born 3 weeks early due to my water breaking and, luckily, she appeared to be a healthy baby with no apparent health problems. My health problems continued. Three weeks postpartum, I started having loose stools multiple times a day and this lasted a few weeks. All tests were negative (a celiac screen was not included).
With my second pregnancy, I was hospitalized and put on bed rest, due to premature inter-uterine contractions and pain. I also had anemia with this pregnancy and delivered 2 weeks early. My second baby appeared to be healthy. My ill health continued, three weeks postpartum, the loose stools started again and I lost all my pregnancy weight. I was checked for parasites, had a colonoscopy, and investigations stopped there since the loose stools stopped after a few weeks. A upper endoscopy would have diagnosed celiac disease but it was not offered, instead the doctor diagnosed me with hormonal irritable bowel syndrome.
With my third pregnancy, I had inter-uterine fetal growth restriction and had to decrease my activity. I remember adding lots of pasta and bread into my diet to help increase weight (exactly the opposite of what I needed since the pasta and bread had a high gluten content). My third child was born 1 and 1/2 weeks early at 6 pounds, 6 ounces. Three weeks postpartum, the loose stools returned. Again, I was checked for parasites and had a colonoscopy. Since my results were negative, I was told that I conclusively had irritable bowel syndrome. With ongoing intermittent diarrhea, I was loosing nutrients and it was difficult to keep up my breast milk supply. I had to stop breast feeding my third child after six weeks due to poor quality and production. Due to diarrhea and malabsorption, I likely had multiple nutrient deficiencies
This time, my symptoms didn’t subside, only more were added. Muscle weakness, arthritis symptoms, weight loss, various nervous system symptoms, frequent lung infections, fatigue and skin rashes were more warning signs that I desperately needed help. During this time, I also had 3 little girls, ages 10 months, 2 years, and 4 years. It was a real struggle trying to be an energetic creative mother for my children. I remember my mom flew out to visit and she was in tears when she saw me. She said that I looked like I had terminal cancer. In many ways, she was right, my body was deteriorating, but not from cancer. Gluten toxicity was affecting every part of my body leading to inflammation and damage. During this period, I lost quality time with my family, my friends, and time at my work.
After a long undiagnosed journey with many symptoms, I managed to finally link my ill health to celiac disease. A gastroenterologist confirmed a celiac diagnosis and I have been living gluten-free for the last 6 years. Once diagnosed, I had my siblings, parents, and children screened. My mother and daughter also had positive results. My mother had canker sores, restless legs, leg cramps, brittle nails,and anemia. My daughter only presented with occasional stomach aches and pale skin. Finally, we were all able to heal.
My Mission To Increase AwarenessOnce I was diagnosed, I learned that only 3-5% of people with CD are diagnosed. This along with my personal experience, inspired me to fulfill a mission to do my part to increase awareness and diagnosis. Working with a variety of patients at the hospital has allowed me to identify potential Celiacs in the hospital population. Many undiagnosed Celiacs have frequent doctors visits and are admitted to the hospital with a variety of diagnosis. I have requested Celiac screening for many patients.
Once my youngest entered grade 1, I knew I could begin writing a blog about celiac disease and gluten intolerance. In addition to my blog, I also began increasing awareness as Celiac Nurse on Facebook, and CeliacNurse1 on Twitter.
As time passed, I began to seek other ways to use my 21 years of nursing (including 5 years of gastroenterology) and 6 years of living successfully with celiac disease to help others. Currently, I am a Celiac Nurse and Gluten Intolerance Consultant at Stuart Healthcare Solutions (my company) in British Columbia, Canada. With this position, I am able to provide support services to assist with diagnosis, education, health assessments, a new lifestyle and problem solving when complication arise. This professional focus has become my passion. Helping others navigate the maze associated with gluten toxicity has become a way of life.
I am an optimist and I believe that change is possible. Imagine, a future with everyone diagnosed, doctors and nurses who are knowledgeable about the full spectrum of gluten intolerance, and all the restaurants, companies, and grocery stores competently selling GF products and meals. This is what I visualize as I start each day. A better future for myself, my children, my future grandchildren, and others who are adversely affected by this little protein called gluten.
Shelly Stuart, R.N., B.Sc.N.
Celiac Nurse & Gluten Intolerance Consultant
Stuart Healthcare Solutions, BC, Canada
Twitter: CeliacNurse1, PaleolithicRN, GlutenToxicity
Facebook: Celiac Nurse and author page, Gluten Toxicity
Myspace: Shelly Stuart, Celiac Nurse