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My Gluten Free Journey

When I was diagnosed with Celiac Disease in 2002 it was one of the best things that ever happened to me!  I have suffered from the symptoms of Celiac disease since I was a child.  Unfortunately both my family and doctors did not know what was wrong with me. I knew that I had a problem with eating certain foods as early as elementary school.  By the time I reached the 5th grade I was labeled as a picky eater. I refused to eat oatmeal, cold cereals, grilled cheese, macaroni and cheese, toast and the lunch provided by my school.  I was also underweight and suffered from vitamin deficiencies, especially iron.  As my symptoms increased I expanded the list of foods that I refused to eat. This led me to stop eating breakfast and lunch.  I started substituting these meals with tea and other caffeine beverages, but glutens still represented a significant portion of my diet.  My doctors were baffled.  They did not understand why my health problems persisted, so they continued to unknowingly treat my symptoms without addressing their true cause.    

As an adult my symptoms increased and I learned to develop coping mechanisms. I continued to seek answers from the medical community.  It seemed as if I had taken thousands of blood tests and numerous prescriptions were issued to treat my symptoms, but there was no diagnosis.  So I lived in a constant state of alternating between feeling okay and extremely ill. After the birth of my second child in 1999 my condition began to worsen. I experienced headaches and numbness/tingling in my hands and feet on a daily basis. Abdominal distention (bloating) and constant bouts of either constipation or diarrhea were normal.  I also suffered from acid reflux and eating pizza, donuts, bagels, and pasta dishes resulted in violent vomiting episodes.  I was in a perpetual state of exhaustion trying to balance being a mother of two with an extremely demanding work schedule. 

In 2002, I scheduled an appointment with an internal medicine doctor with extensive experience in medical research.  He listened to my symptoms, ordered several blood tests and requested that I maintain a food diary.  My test results indicated that I had Celiac Disease.  He referred me to a Gastroenterologist for biopsy of my small intestine during an exam known as an endoscopy.  The test confirmed that I had inflammation of the small intestine and abnormal villi.  I was instructed to go on a gluten free diet.  I finally knew what was wrong with my body.  I finally had an answer to my problems. BUT my journey was about to begin.  I recall asking myself what is a gluten free diet? 

My relief quickly changed to anxiety.  In 2002 there were no celebrities endorsing a gluten free diet.  The popular food manufacturers were not producing gluten free products. Navigating the gluten free world was quite a mystery.  My first trip to the supermarket was a waste of time.  There was nothing for me.  With the exception of fruits, vegetables and unprepared meats all of other products contained glutens.  So I shifted gears and began shopping at a small local health food store.  This was my trial and error period.  I was unfamiliar with the product manufacturers.  I can recall leaving the store with two shopping bags and spending $70.  There were some products that I disliked instantly and trashed.  My food choices were very limited and I was fearful of leaving my food comfort zone after finding a few items that I liked.  Physically I noticed the positive effects of going gluten free instantly.  Emotionally and psychologically I had not learned to see the world of food through a gluten free eye.

Beginning a gluten free diet was only half the battle.  I was in complete control over the food in my kitchen. However, social and work functions where food was served was a big problem.  They were a great source of temptation and I felt like people were always judging me.  In 2002, most people did not know or understand the adverse effects of glutens on people with Celiac disease. I was either reduced to eating a salad (if there were no croutons or dressing on it) or not at all. It was also difficult to dine at restaurants or at the home of family and friends.  This difficulty stemmed from my inability to handle the issue of addressing gluten free food when outside of my home. My family and friends were willing to support me, but lacked knowledge about what it meant to be gluten free. To be honest, I was unable and/or uncomfortable with expressing the type of support I needed.  Eventually I was able to break through this great barrier.  I met with a nutritionist.  I researched products online.  I utilized the website of Celiac and gluten free organizations and I read every food label I encountered.  Eventually with the support of family and friends, I finally established my comfort zone.  I feel a million times better!  Maintaining a gluten free lifestyle has alleviated my symptoms. 

I no longer focus on what I can no longer eat.  My focus has shifted to feeling healthy and happy. Life is so wonderful when you learn to see the world of food through a gluten free eye!

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