Describe your life prior to diagnosis:
I was a Division I athlete in college, studying in an intensive STEM program to become a marine biologist while doing undergraduate research.
How did you come to know (or suspect) that you have celiac disease:
I started getting sick every day. I lost 20 pounds and couldn’t keep any food down. The scientist in me remembered that my mom, who has lupus, has a sensitivity to both gluten and milk. So I did an experiment, cutting out both gluten* and dairy for 2 weeks, and then I added dairy back in and I was fine. When I added gluten in I was extremely sick. I then told my parents and immediately went to multiple specialty doctors.
*This is not recommended, as you must be eating gluten to get tested for celiac disease. Cutting out gluten before you get tested can cause incorrect results. Continue to eat gluten until your doctor recommends a gluten-free diet.
If you were diagnosed, who made the diagnosis?
A gastroenterologist, after an endoscopy. Along with celiac disease, I was diagnosed with IBS, Barrett’s esophagus and Raynaud’s syndrome.
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?
I am a very persuasive person and was not going to take no for an answer. But I did have to deal with insurance and referrals and blood panels for about a month until my diagnosis. This was all happening while I was a student athlete in college. My schedule was nuts.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I could have focused more time on myself and taken better care of myself. I would have loved it if my doctors treated me more quickly as well.
Describe your experience with living with celiac disease:
Thankfully I have my celiac disease under control, but I live with the constant fear that I may acquire another autoimmune disease. My mom has lupus and I know that I have all the genes to get more autoimmune diseases. I try not to let that stop me though—I have my degree, and have continued to pursue my passion for swimming by becoming a professional free diver and marine biologist. However, my job is extremely physical and I do tend to get chronic fatigue.
What would a cure mean for you?
A cure would mean no more chronic fatigue—I could do everything I want! A cure would mean I get to travel and live my life without worrying if I will be poisoned by the next thing I eat.
Is there anything else you’d like to add to your story?
Yes, while celiac disease and autoimmune diseases are not easy to cope with, I hope my story can show that you can do anything with an autoimmune disease.
