Kayla Quock

Handling the Psychological Symptoms of Celiac Disease

Celiac Disease

This post is written by Erin Purnell, she is currently a Junior studying Marketing at Loyola Marymount University. She was diagnosed with Celiac Disease one year ago and recently became a Nima College Ambassador. You can read more about her in her Breaking Bread interview.

Celiac Disease

A decade of diabetes called for a celebration with celiac.

Translation?

I was diagnosed with celiac after living with type one diabetes for 10 years and in an attempt to laugh instead of cry, my marketing brain tried to make something snappy. You see, I have always identified as a positive force. I make it my mission to ensure the happiness of those around me and to be a happy person myself. So when a wave of depression hit me last year following my new diagnosis, I was absolutely leveled.

The weight of diagnosis

It was a mere three weeks until I had to go back to college and try to live my new gluten-free life. I had no kitchen, I had no privacy, my living situation was often hostile, and I felt as if I was drowning. Suddenly, a girl who had to fake that she was crying during The Perks of Being a Wallflower in ninth grade would cry inconceivably every single day. The sight of gluten made me sick, friends stopped inviting me to dinner, and I ate three meals a day alone in my room.  My medical ID now had two chronic illnesses engraved. I thought I’d had my share…

There were other external factors that were heavily impacting my mental health but it was the internal psychological distress caused by gluten that I couldn’t comprehend. You often hear about the physical symptoms that accompany celiac disease and truly, this isn’t surprising. Psychological symptoms are not easy to communicate and probably even harder to study. How can someone describe that they’re in a sort of brain fog until they’ve left it? People are resilient, especially those of us who deal with autoimmune disease. We are used to working twice as hard to push through, rather than realizing there may be a reason we’re working that hard in the first place.

Beyond Celiac has compiled some of the research that has been done so far concerning these intangible symptoms, citing that depression is almost 2 times as likely in people who have celiac. This may be linked to malabsorption and that doesn’t come as a shock. Before I was diagnosed with celiac, I was getting unimaginably painful cramps in my legs every night. My physical health was clearly suffering from my iron deficiency; why wouldn’t my mental health suffer as well?

In fact, I remember starting toxic fights with my family that I chalked up to a hot temper. Was I suffering from malabsorption? I used to take hours to do homework in high school that everyone else finished in minutes. Was I in an undiagnosed-celiac brain fog?

The celiac learning curve

During the first few months after my diagnosis last year, I needed recovery. But life doesn’t stop. All the usual obstacles that stare down a college girl glared at me too… but for me there were “glutened” symptoms and blood sugar problems to keep things even more interesting. These components of my life make for a lethal mix.

I had an endocrinologist appointment – diabetes doctor – two weeks after I’d been glutened. I kissed my then-boyfriend after he had a sip of beer (though he promised he wouldn’t drink), and a week of gnarly symptoms ensued: bloated stomach, mouth sores, five-hour body-shutdown, and yes, depression. Add to the mix that he was flirting with other girls in front of me – leading to an abrupt end to our relationship – you can see that I was not emotionally stable entering my appointment.

I have always prided myself on controlled blood sugars but the recent weeks’ events led to out-of-control results. My beloved endocrinologist had passed away earlier that year so I was seeing a new doctor. It didn’t take long for me to realize that Sarah lacked the key to relating to others: compassion. Despite my numerous explanations that the past two weeks’ blood sugars were an anomaly, she led an unceasing barrage of criticism that brought me to tears. I cried the entire appointment, hiding my face in sheer embarrassment. And yet, despite my tears and the explanation that I was in the throes of a powerful gluten reaction, Sarah did not stop. This was one of my low points.

But it is often those low points that guide you to where you need to go next. The next step in my celiac journey was to embrace my new normal. It wasn’t until this appointment with Sarah that I was able to realize that I had not yet come to terms with my diagnosis. I was reluctant and angry and fearful of this new chapter in my life, which made me unable to handle this type of situation that I used to manage gracefully. I realized in this moment that it was only by accepting celiac with open arms that I’d be able to truly heal.

Finding my gluten-free rhythm

I just needed a little time. Time was the best remedy.  It was time that made me comfortable in my celiac skin and it was time that allowed me to embrace my new normal.

It was months of removing that poison from my body and mind, learning the nuances of the celiac diet and improving my ability to adhere to it.

It was months of rebuilding my confidence and accepting all the different ways this major obstacle changed me as a person.

It took me seven months, but I finally started to eat out again, empowered by my Nima, and empowered to be my own advocate. I still experience small bouts of gluten-induced depression, but I know that I will recover every time, and feel even more powerful once I do. I am still a positive force; celiac has just made me cherish it even more.

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Love Erin’s post? Here are a few more empowering posts by Nima community members:

What Celiac Disease Taught Me About Fitness

How to Get Started with a Gluten-free Diet

What Do You Do If You Accidentally Get Glutened

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