National Foundation for Celiac Awareness

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How Common Is Celiac Disease?

Lindsay Spencer
Intern




Until I was 19 years old I was your average teenager and college student. I was overall quite healthy, never having more than the common cold. The first year and half of college I was like any other college student; making new friends, getting used to classes with over 200 people in them, and adjusting to life away from home.  

My first memory of having health problems is one you don’t forget. I was 19 years old and I had just joined the rowing team. During my first rowing test I started to have extreme chest pain and I could barely breathe. Every time I took a breath in it felt like thousands of needles piercing my chest. After the test I went straight to the university health center. I remember the nurse say “We don’t think you had a heart attack because you are so young… but we are going to run some tests just in case”.  After testing my oxygen levels, running a full blood work up, taking chest x-rays, and my first of several to come EKGs they determined that I had a condition where my chest wall becomes inflamed and that is what caused the chest pains and inability to breathe. They sent me home with Vioxx (a heart medication now off the market due to the cases of heart attacks and strokes) and told me to rest. The doctor also had told me that I could possibly be having panic attacks or it was exercise- induced asthma. After mentioning to my primary doctor that I would sometimes get dizzy spells where my heart would race when I was not doing anything strenuous or exercise related he recommended that I see a cardiologist. He also noticed that my thyroid levels were elevated so he sent me to an endocrinologist as well. At the cardiologist I was diagnosed with Supraventricular Tachycardia (SVT) which is an arrhythmia of very fast heart rhythms. I had to wear a heart monitor for a month, which in college was not the most flattering thing a girl wanted to wear or to explain to everyone why she had cords coming out of her shirt into a beeper- like device.

 3 months after the doctor referred me I finally got into the endocrinologist. My thyroid was retested and I had an ultrasound on my thyroid glands. The ultrasound came back negative for cancer and the thyroid levels came back normal. I was diagnosed with thyrioditis, a temporary thyroid problem due to a virus.

During all this time I had also developed loose stool but had not considered it a problem for several months because I did not have any abdominal pain associated with it.  After 3 or 4 months of loose stool and diarrhea my primary doctor sent me to a gastroenterologist. I had all the work up and a flexible sigmoidoscopy which all came back normal. I was told that I had a virus that I picked up from rowing. Once again I was given medication and sent home.

A year after my first set of problems I had to quit rowing. The new heart medication I was on had also blocked the receptors in my muscles making me weaker. I could no longer keep up with my teammates and the rigorous workouts. I had been pushing myself too hard for many months and it had finally caught up with me. My body could no longer physically withstand the stress.

Every month it seemed I had something else wrong with me but none of them were related to each other. I went on to have both of my calves swell up and the scare of a possible blot clot. I had a herniated disk which put me into physical therapy for several months. I even had found a lump in my right breast but thankfully it ended up just being a small growth of cells around a duct that sometimes happens around menstruation.  

My cardiologist sent me to an auto-immune specialist worried that all of my problems were in fact related but the auto-immune specialist did not even run any blood work or any tests. All he did was say that if I felt fine day to day then I was health and said I was too young to have anything wrong with me. Looking back now I cannot believe that an auto-immune specialist never even thought about Celiac’s Disease!

The summer of 2006 was my all time low. I was dealing with personal stresses, had just moved into my own apartment and was adjusting to living by myself, working outside in the summer heat every afternoon, and was taking my hardest class, organic chemistry. I didn’t realize it but my body had deteriorated so much that I would be too tired to pick up a plate and walk it the 10 feet to the kitchen. I didn’t even realize that living like this was not normal because my mind had also become so clouded. I had fallen into depression and never realized it.

 At last, after 2 years of problems, I went to see an endocrinologist that my hairdresser had told me about. She had been diagnosed with thyroid cancer and associated with many of my symptoms. After telling the doctor my long list of problems, the first thing he told me was that I had Celiac’s Disease. I couldn’t believe that someone had just answered all my prayers. I was officially diagnosed after taking a DNA and fecal test. The diet transition was actually very easy for me. I remember cherishing my last piece of bread and promising myself to stick to the new diet. I only cheated once about 2 weeks into the diet to see how I would feel. Only 30 minutes later it felt like a wave had hit me. I was light- headed, dizzy, horrible stomach cramping, and mentally I couldn’t focus on anything. After that I have accepted my disease with open arms because it meant that I would no longer be sick. I would no longer have to worry about would happen to me next. Now that I am on my way to being healthy and strong again my goal is to help others so that they do not have to experience the problems I had or problems other people have gone through.