Describe your life prior to diagnosis:
Before diagnosis I was in constant pain, mostly in my abdomen, joints and back. I was always fatigued and had low energy.
How did you come to know (or suspect) that you have celiac disease?
My parents were constantly taking me to doctors and trying to help me. It took years and finally at age 15, I went to another new gastroenterologist and he said, “Let’s get you in for an endoscopy right away.” It was then that they found out how damaged my villi were and diagnosed me with celiac disease.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
Oh my journey was very long. My whole life I had abdominal pain and was diagnosed with many different things. I am 17 years old now.
The challenges were so hard. I was tested for celiac disease when I was younger and it was negative. I missed many days of school. I tried to play many sports but I would get so exhausted and didn’t know why.
The hardest part was hearing from so many doctors that I looked fine and them never having answers. Just because you look healthy doesn’t mean your insides are healthy, too. It was hard to be told that as a kid because I felt like they thought I was exaggerating when I was suffering tremendously. The pain was so bad and sometimes my abdomen would get so distended that it was hard to do normal daily tasks. I knew something was very wrong when one night I couldn’t get up off the bathroom floor because the pain was excruciating. My mom couldn’t even pick me up or move me at all because it hurt so bad. I had to go to the hospital by ambulance.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Nothing could have sped up my diagnosis, but I think every gastroenterologist should be required to test patients who complain of abdominal pain, constipation or diarrhea for years for celiac disease. I had been to about 10 different gastroenterologists, all that time spent in pain and with heartache.
Describe your experience with living with celiac disease:
My pain, constipation and constant fatigue really took a toll on me while I was in school. I am a hardworking student, but keeping my grades up was the hardest challenge when I was so tired and in so much pain. I didn’t sleep well, which made it even harder.
I am so glad that I was finally diagnosed two years ago. I am happier and healthier. It is still quite challenging to navigate dating and hanging out with my teenage friends, and it’s stressful to constantly be aware of cross-contact, but I am a positive person; I feel like I’ve learned so much through this journey and I am very fortunate to have a lot of love and supportive family. I also believe I eat a healthier diet now.
The initial fear, shock and emotional adjustment to the diagnosis has worn off and now I can see that I’ve gained much insight from having celiac disease. I am made up of many parts and celiac is only one part of me; it doesn’t define who I am. I am healing everyday and excited for my future!
Is there anything else you’d like to add to your story?
Celiac disease is a very hard diagnosis to receive because it stays with you your whole life, but I am confident with more people spreading awareness and supporting fundraising, more research can be done and hopefully we’ll have a cure someday soon.
