Describe your life prior to diagnosis.
I would consider myself just an average teenage girl, but one who was unaware of just how sick I actually was.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I lost an outrageous amount of weight, my hair started falling out, I had red skin and rashes on my face, and I bloated incredibly after every meal. I had no idea when walking into my pediatrician’s office that celiac could have even been an option. I have no family history of celiac disease, which is also why it never crossed my mind.
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 wasn’t well for close to two years, but I also didn’t recognize that “feeling unwell” was actually a hidden autoimmune disease. I think the greatest challenges I faced was adapting to such a drastic lifestyle at the young age of 17. Being a high school student but also preparing to start my first year of college the following year with the additive of celiac disease was challenging. Wrapping my head around celiac disease somewhat controlling a lot of aspects of my life did not come easily at first.
It took a lot of patience, and I had to learn how to be kind to myself, giving myself more grace.
Describe your experience living with celiac disease.
Living with celiac disease doesn’t necessarily define me, but it absolutely helps shape who I am. My older brother was diagnosed with celiac disease about two years after I was, which has been fun as we get to share our favorite snacks and new gluten-free finds with each other. I have been blessed with not only a supportive family, but incredibly supportive friends. My friends take it upon themselves to educate themselves on celiac disease, providing safe spaces for me to eat, as well as include me the best way they can in all aspects regarding food and eating. Celiac disease has taught me to be a confident cook—I can prepare myself hearty, healthy meals. Cooking gluten-free food is a form of independence and control over something that can feel really uncontrollable sometimes—my food!
Is there anything else you’d like to add to your story?
My main advice to any teenager, one who feels lost or scared, going through a new celiac diagnosis, is do all the research, and find gluten-free instagrams and social media! Find someone to help you advocate for yourself, because at first it is very daunting!
