LizThe Voices of Celiac Disease

“I learned to compartmentalize the pain because I was taught that it was my fault. My pediatrician prescribed a ‘better diet,’ with lots of ibuprofen or Tylenol and tea as needed.”

A photo of Liz sitting outside.

Describe your life prior to diagnosis:

Growing up I had chronic pain, dealing with with pelvic pain, sore throats, an acidic stomach, gas pains, and the list goes on. I was exhausted all the time, and I could fall asleep within 5 minutes of eating a meal. But that pain was normalized, so I just lived with it.

I believed that I was doing something wrong—not eating well, not exercising enough, that there was something in my lifestyle I could control or change—but no matter what I changed the pain was there, so I learned to ignore it.

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

When I was in college, I had three friends who had gluten sensitivity. After talking with them about their experiences, I started to realize that my symptoms mirrored many of theirs. At that point, I didn’t know much about celiac disease and I didn’t know to see a gastroenterologist (GI) for these issues.

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 started experiencing symptoms of CD, IBS, and GERD many years ago, essentially from childhood. I learned to compartmentalize the pain because I was taught that it was my fault. My pediatrician constantly prescribed a “better diet,” with lots of ibuprofen or Tylenol and tea as needed.

Then, in my sophomore year of college, I kept getting sick with what I later learned was tonsilitis. I ended up having it six times within six months, again not being taken seriously or receiving the care I needed from my primary care physician or the ER staff when I stopped responding to medication. I finally saw an Ears, Nose, Throat doctor (ENT) who removed my tonsils in the summer.

After the surgery and recovery, I decided to listen to my body seriously and advocate for myself more. My OB/GYN looked into my chronic pelvic pain, but everything was normal from her side, so she recommended I see a GI.

After seeing a GI for the first time, I had two colonoscopies, several rounds of blood testing, and an endoscopy with biopsy before I was diagnosed with celiac disease. It took almost a year for the whole process to be completed.

Do you believe anything could have sped up your diagnosis? If so, please explain:

There are lots of misconceptions when we consider our own health. It can be rooted in bias, but in the end we tend to be very hard on ourselves and gaslight ourselves into thinking we are to blame for all our circumstances. But this is not the case and it’s destructive.

We need to find a healthy balance of listening to our bodies’ needs and being responsible for our health. If I had that sort of support from a younger age, we likely would have taken my symptoms more seriously and investigated the issue. What we need is a mentality shift, not just at home and in schools or work, but also in medicine.

Describe your experience with living with celiac disease:

It has been quite a life-changing adjustment. Learning I had CD was pretty surreal at first, especially since there’s a stereotype about it being a “White people disease.” Not to mention no one in my family had ever talked about CD or any sort of GI problems in the past.

Being a BIPOC in a predominantly White space can be very difficult, even if I have proximity to Whiteness as a Mixed-Race person. I hadn’t met any other Black people or POC who have celiac disease, so I decided to create an Instagram account that could be a resource and community for Celiacs of Color and all people who adhere to a GF lifestyle, regardless of the reasons why. CD is extremely underdiagnosed in the Black community (for many structural reasons), and I hope to help others become more aware so less folx go undiagnosed or misdiagnosed.

I also was an avid baker prior to my diagnosis and worked in the bakery at my college up until I was chronically ill with tonsillitis. Baking was not only a stress reliever, but it was my love language, a way for me to create something delicious for or with someone. I especially loved practicing pastry for its technical challenges and ability to create different flavor profiles. However, since my diagnosis, I have not mustered up the courage to continue baking at the same level that I used to. One of my goals this year is to overcome that fear and sadness to begin doing something I love, and to be okay with the trial and error that will come with learning to bake all over again. I also started my Instagram with this in mind, so I am very excited to share my process with everyone!

I love cultural foods because they connect me to others, not to mention they taste good. But I found that it was very easy for me to be excluded when GF alternatives were not available. So instead I decided that if I want to eat something, I’d find a way to adapt it. I enjoy the challenge of trying new recipes and new foods.

To me, food is life because it is literally what sustains us. Like music, it’s a universal form of expression. Everyone should be able to participate in it and I believe with a little creativity and patience, creating any allergen-safe food is possible. This was another one of my goals in creating my Instagram, and I have been successful so far in sharing methods for re-creating foods from different cultures so that they’re celiac-safe! If you’re curious to learn more, check out my GF Guide to Lunar New Year for an example!

What would a cure mean for you?

Even if there was a cure for CD, I would likely keep a mostly gluten-free lifestyle. But more than anything, a cure would mean having the freedom to explore the world and engage with other cultures with authenticity and without any barriers. That’s a dream I’ve had since childhood, and I still have hope that I will be able to fulfill it.

Is there anything else you’d like to add to your story?

It’s definitely possible to live and thrive with celiac disease, so don’t let it limit you from doing the things you love! If you’re interested in following along and joining this community I am building, my Instagram handle is @yeet.that.wheat I’d love to meet you and hear your story!