AlexisThe Voices of Celiac Disease

“As a struggling college student, my groceries are the second-most expensive bill every month next to my rent.”

A headshot of Alexis

Describe your life prior to diagnosis:

Prior to my diagnosis, I was constantly tired and struggling, and I always had joint pain, brain fog, nausea, and swelling. I grew up feeling this way and it took me until the end of high school to realize it wasn’t normal, nor was it from depression, anxiety or being burnt out. But I was on my own to figure out what was really going on.

I looked for any explanation for why I felt exhausted, and got blood test after blood test just for the doctors to tell me I was a perfectly healthy 18-year-old girl and send me home again and again. Finally, I stood up for myself and asked for a full panel blood test—that’s when I found out I had an autoimmune disease.

How did you come to know (or suspect) that you have celiac disease?

I had swelling, joint pain, stiffness, brain fog, constant fits of zoning out, fatigue, nausea, and bloating. Closer to the diagnosis I was having narcolepsy-like incidents where I could not keep myself awake for more than an hour.

Who made the diagnosis?

A rheumatologist.

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?

It took years for me to get diagnosed because no one took me seriously. My family thought I was picky and my doctor thought I was crazy. If I hadn’t fought for myself, I don’t know where or who I would be today—the symptoms were slowly killing me.

After the blood test, it took over six months for the rheumatologist to contact me and another six to get diagnosed. Two years later, I’m trying to adjust to the new lifestyle, but I’m finding out that Texas isn’t a gluten-free friendly place. I’m hoping that will change.

Describe your experience with living with celiac disease:

It is extremely hard living with celiac disease in Texas. No restaurants near me have gluten-free options. Stores have very, very limited options for most things. As a struggling college student, my groceries are the second-most expensive bill every month next to my rent.

It is hard to have an autoimmune disease and be constantly worried about maintaining vitamin levels, protein levels and intake of fresh foods, but adding on eating gluten-free with absolute certainty there is no cross contact is nearly impossible with a normal schedule.

Sometimes people around me roll their eyes when I say I can’t have gluten, or get upset when a group outing turns into a search for gluten-free options. I am hoping that with the rising amount of people unable to eat gluten, gluten-free options will rise, too.