Persistence and Determination: Tori’s Story

Persistence and determination were two key factor that helped Tori Kenyon, a 20 year old student from Boston, Massachusetts, get diagnosed with celiac disease. Read below to see how Tori uses those two key factors again to help others with celiac disease.


My name is Tori Kenyon and I am 20 years old from Boston, Massachusetts. I am a rising junior at Connecticut College where I am studying Psychology and Mathematics. I am also a member of the Women’s Track and Field Team as a sprinter.  Giving back has always been my passion.  I love spending my time volunteering and have dedicated my time to a homeless shelter children’s program in New London, CT and last summer spent a month volunteering at the Boston Food Bank. One day I hope to have a career in Event Planning. However, I wouldn’t be where I am today, pursuing my dreams, if it weren’t for a blessing in disguise I like to call celiac disease.

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Tori’s smiling because she’s a member of Team Gluten-Free!

The months before my diagnosis of celiac disease were the roughest months of my life. I remember having intermittent stomach pains starting December 2008 and continuing through January 2009, but the pains were not severe enough to have to see a physician.  Things escalated quite quickly, however. It all started in February of 2009 when the right side of my back began to ache. My mother is a nurse so when I kept complaining, she took me to get an MRI, which was inconclusive. The pain in my back continued and I also began having severe abdominal pain. I followed up with a general surgeon in March of 2009 after having an abdominal ultrasound, which revealed an enlarged spleen.  Once again the doctors said it was nothing to worry about; I was probably just born with a large spleen. The pain continued so in May of 2009 I had a pelvic ultrasound which showed  an ovarian cyst, which doctors believed could be the reason for my abdominal pain.  After a consultation with a gynecologist, she also thought everything looked fine and it was just a follicle, not a cyst. Come June and July aside from the persistent abdominal pain, I now had decreased appetite, fatigue and severe leg pain.  Again my blood tests were normal, and I was starting to believe my doctor thought everything was “all in my head.” My doctor believed I had an eating disorder because I began to lose weight and would often refuse to eat to avoid the pain I would experience  after one bite. I felt alone and afraid, and the inability to find an accurate diagnosis hurt more than the physical symptoms.

After months of persistent pain and unanswered questions, I felt like I would never have an answer; worse, I felt no one was listening to me. I began to think my life would always consist of leg pain, abdominal pain and fatigue. I spent the entire summer having medical tests, while other “normal” teenagers spent their summers at the beach and in the pool. I was constantly curled up, sleeping, too tired and sick to train for my upcoming soccer season; I felt defeated. Thankfully, another trip back to my primary care physician solved everything. She saw my frustration, and saw how much pain I truly was in, so she decided to run a whole bunch of tests and blood work. Finally in August of 2009 one simple blood test changed my life forever. The blood work returned with my tTg level at 560, yet the normal level is below 5. I was told I had celiac disease, but I had no idea what celiac disease was. I distinctly remember that phone call from my mom. I was sitting in my basement with my two sisters, curled up on the couch sick as a dog, feeling like if I stood up I would pass out. Everything made sense; all of my symptoms finally had a diagnosis. The official diagnosis came on September 29, 2009 when I went in for an endoscopy, which revealed that my small intestine was very inflamed with absolutely no villi.

I have been living gluten-free for the past 5 years, and have had some ups and downs. I am often very sick from cross-contamination, and having a very sensitive digestive system. It can be very hard at times, but I have seen such an improvement in the accessibility of gluten-free foods in grocery stores and restaurants. I have come to accept my diagnosis as not something that makes me who I am, but merely, a small daily obstacle that I have to overcome for the rest of my life.

I decided to join Team Gluten-Free because I want to share my story and raise awareness and funds for Celiac Disease Foundation. I want to use my voice (and legs) to help out a community that helps me every day, and let others know that gluten-free is no “fad diet,” but rather a life-line for those of us with celiac disease. Racing the Boston Half Marathon resembles the journey I was on prior to my diagnosis – persistence and determination. You can’t just give up, and that is the message I hope to get across. Don’t ever accept the fact that your symptoms might be “in your head.” Had I believed that, I would still be suffering, and it’s scary to think of the condition I would be in; persistence is what drove my diagnosis and will now drive me in this half marathon!

If you wish to help Tori reach her goal you can donate here or if you want to join Tori on her journey by running  the half marathon with her you can click here.