I’m Twenty Years Old. Diagnosed With Celiac Disease

I was in denial.

I was in denial for several weeks. It couldn’t possibly be me. It had to be someone else. Yes, for me it became a reality. If I had the answer to my problem, shouldn’t I be happy? After all, it took almost eight-teen years to finally be diagnosed. I was one of the unfortunate ones, with over 10 different symptoms related to celiac disease. Joint pain, brain fog, moodiness, and depression. Were just a few on my list of symptoms. After the years of learning and educating myself. It is normal to feel rejected, to feel in denial. To feel completely lost and hopeless. I went through a grieving period of losing the food and activities that I loved!

I have celiac disease, diagnosed in 2010.

The reasons I am opening up about celiac disease, is because I want to educate individuals about celiac disease, because there are people in the world wandering around what is wrong with them. I hope to give some answers in the process.

I am encouraged to share my story, because I want others to feel they aren’t alone. You too deserve to find answers.

My Symptoms

• At age 2, I was taken to the emergency room with a fever over 103F / 39.4C, and welts all of the body.
• Between the ages of 2 and 5, my body would go into phases of my body temperatures spiking between 103-105 / 39.4C – 40.5C. My mother was a nurse, so she was there for me through all of it.
• Age 7 had my tonsils and adenoids removed, because I was getting strep throat left and right. My tonsils were so huge they were pressing against each other in my throat, blocking my airway.
• Developed ulcers inside of mouth continuously until diagnosis, as well as cavity issues. All of my molars and back teeth have fillings before the age of 10.
• Age 10-11 joint pain became unbearable and was bedridden. It upset me a lot because I couldn’t be outside playing with my brother and sister. I missed trick-or-treating this year, and had to stay in the car and watch my siblings go trick-or-treating(the last time I ever went trick-or-treating)
• Had to drop out of wrestling, track and field, and swimming (which I loved tremendously) because my joints hurt too much. We recently moved to a new home with lots of stairs. I wanted the top floor for my bedroom but had to go with a room on lower floor because my joints hurt too much
• Temperatures spiked again in the 103-104 / 39.4C – 40C range, and I had very strange lumps all over my body. They were red, and had purple centers. They were not itchy, they hurt when they were touched.
• Age 11-13 going to Children’s Hospital in Pittsburgh, PA. It was an hour and a half drive each way. My dad took me. Doctors were focused on Rheumatoid Arthritis, Lupus, and possibly Leukemia.
• I was put on steroids, anti inflammatory medications, as well as experimental drugs they were trying on children to help with rheumatoid-like symptoms.
• Nothing was helping. No diagnoses. Age 16 in a failed attempt one of the best known doctor that came from Pittsburgh was in our area. Specialized in Rheumatology. He basically had no idea why I was there. He suggested I might have Chronic Fatigue Syndrome.
• Age 16-17 from my elbow into my fingers started to go numb for several hours at a time, and also trigger finger in my pointer finger, and thumb. I was experiencing brain fog, and just feeling like a cloud was over my head unable to think clearly. This affected my school learning.
• Age 16-18 my stomach issues started more than normal, and was throwing up after every meal. My bladder was hurting constantly. On top of the previous symptoms.
• Age 20 my fevers were spiking again up to 103F / 39.4C, I started going in and out consciousness, I had blood in my urine, my skin was very pale. My heart rate was 130 range sitting still.
• My general practitioner thought I might have HIV, and had me tested. Negative.
• In a last attempt there was a surgeon in the area that my family heard that he was a good doctor. I sat with him for a few days, and he said, ‘No one can fake low white blood cell counts, and a high fever.” Lets get an antibody test done for celiac disease and see what the test results.
• Age 20 I was diagnosed with celiac disease.

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