Living with EoE
Being born into a family with a history of food allergies it was basically inevitable that I would have them. At the age of six months I was diagnosed with anaphylactic (life threatening) food allergies to peanuts, tree-nuts, milk, eggs, soy, beef, sesame, and green peas. Of course through my 17 years of life many have come and gone, but the preceding eight stayed the most consistent in my life, or for lack of a better term out of my life. I had always experienced the feeling that there was food lodged in my throat each time ate, or would randomly throw up after meals, but it wasn’t until the seventh grade that things got out of control.
My parents always told me stories of trading off who held me while I threw up, and who was on “clean up crew” while I was a young child, they took me to doctor after doctor and the issue was just blamed on food allergies.
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And it did get better for a while, until I reached middle school age. I can remember waking up in the middle of the night on many occasions with the most excruciating pain of my life. The feeling of multiple sharp pains would shooting down my abdomen, and spiral out into small circles just on the inside corners of my hip bones, theses pains so severe that my lower body felt paralyzed. After an hour or so of the pain I would throw up, and the pain would weaken and eventually fade away. If I didn’t have the pains, I had the feeling that I was constantly choking as I tried to eat, and then eventually throwing up later that day or evening.The problem was that there was no cause, no rhyme or reason, and no cure to the pain. After being sent to multiple specialists, I was finally seen by world renowned Dr. Wood at Johns Hopkins.He suspected a newly discovered disease called Eosinophilic Esophagitis. EoE is a build up of white blood cells called eosinophil cells in the tissues of your esophagus. It causes the esophagus to harden when food tries to pass through, and eventually there will be “craters” or legions all down the patient’s throat.
The first step was an upper endoscopy (scope) to take a biopsy of the cells in my throat, and an acid reflex test (just to rule it out). A person without EOE should have about 10-20 eosinophil cells in their biopsy; in my case the doctors got to 100 and stopped counting.
It was made very clear that I had EOE, but because the diagnosis had only been around for about 5 years when I was diagnosed, there was no long-term research or any plans on how to treat it. Dr. Wood wanted me to go on a diet of just formula with the daily nutrition I needed. Thankfully my parents wanted me to be able to go out to eat with my friends, and live a relatively normal life as I enter my teen years. We selected as a family to treat me off my symptoms, and not worry about the possibility of long-term damage since there was no research to go off of. I am the research. We restricted my diet even more and I began taking more medicines, and in six months we would do another scope to see where my cell count would be.
My second scope came back with improving results, along with my third, and my fourth. While the cell count was not normal, it was low enough that I had no symptoms; I even began the reintroduction of milk and egg into my diet. Things were under control and life was great! I started to notice towards the end of my junior year of high school I was starting to have trouble swallowing again, and the pain in my abdomen was making appearances every now and then. I thought if I ignored the problem that I would just go away. In this past June during my typical “check up” appointment my doctor ordered my fifth scope. The results did not come back good. My cell count had shot-gunned back up, due to the reintroduction of foods. I felt so angry when I got the results last month (August) bad news meant more restrictions to my diet.
I soon had a change of heart, my very wise mother reminded me of how these trials have built my character, and helped shaped who I am as a person. Without my food allergies, or my EoE my life would be much easier, but it wouldn’t be my life. All the negative energy I have gets turned into a positive thing when I mentor other young teens going through what I did, through the Food Allergy and Anaphylactic Connection Team’s teen advisory council. I have gotten to travel to different parts of the country and speak at national conferences to speak about my life and how I deal with the battles I face everyday. Thanks to my medical conditions I get amazing opportunities to help others, and meet other people just like me, all things that would not come to be without my allergies. EoE taught me that there is always light in even the darkest the of corners. I have chosen to fight this disease not only for myself, but the future teens who have to battle this disease in the years to come. The trials I have lived through with my food allergies and EOE have made me a more responsible and caring teen.