What It's Like to Have An Eating Disorder and Celiac Disease

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By: Valentine Esposito When I was initially diagnosed with Atypical Anorexia, I longingly looked at recovery as a destination: a point of utter finality that I aimed to reach. Instead, recovery has been a journey, and maintenance of recovery simply a continuation of it. I have come to believe that there is no destination, just more chapters to my story, many that have nonlinear and oftentimes comical plot lines.

After a ton of deliberate work with a therapist and nutritionist, I had reached the promised land of recovery steady(ish) state. I was finally eating intuitively and exercising in a healthy manner. Though, this pride in my ability to nourish myself and honor my body’s needs would quickly go flying out the window if I saw a picture of myself I didn’t like (which unfortunately, is most pictures). In the wake of having my distorted body image rattled, intuitive eating quickly felt like a lack of control and recklessness. But thanks to my support team, I was able to push past these bumps in my recovery and press onward with my healing.

As I was looking happily down my recovery maintenance road, I got metaphorically t-boned by a Mack truck. Despite my nutrition, exercise, and sleep habits being the healthiest of my life, I had felt impossibly fatigued for a few weeks. Being a medical student, I was intimately familiar with fatigue, but somehow this felt different. My body felt like it just didn’t have enough fuel: I wasn’t tired so much as I was out of energy. And I knew this wasn’t depression-fatigue either, because I also knew that phenomenon quite well, and in those instances, my body felt like lead. Something was wrong, and that something was new.

I went to my doctor and explained this foreign type of tired. After some bloodwork, they found I had low levels of B12, iron, and Vitamin D- all of which are responsible for giving us energy. The mystery was partly solved. These deficiencies can manifest for a variety of reasons, chiefly among them, insufficient nutrition. I took this explanation to heart for a moment before quickly disregarding it as untruthful. Had I been told these deficiencies were the product of my restrictive eating habits a year ago, I would have believed it. But I was well along my recovery journey, and these levels should have been trending up, not down.

I advocated for myself, pushed my care team to see my case beyond my history of an eating disorder. After some more bloodwork, we discovered that I had celiac disease. Unlike gluten intolerance, celiac disease means that my immune system attacks my body when it detects gluten. This extensive immune response has destroyed my small intestines, making it impossible for my body to absorb the nutrients it desperately needed.

So what did celiac disease mean for my recovery journey? I had to start meticulously dissecting food labels for gluten and gluten containing products. This was my version of hell on earth. I had worked so hard to learn to eat without obsessing over calories, to instead focus simply on giving my body the food it needed. I anticipated that I would start restricting my eating again given that I was forced to focus on food labels, one of my strongest eating disorder triggers.

But I didn’t. I have been gluten free for about a month now, and I genuinely underestimated myself and how far I had come in my eating disorder recovery. My recovery was more than just learning how to eat again. My recovery was about learning that I am worthy of taking care of my body, of doing the best I can by it. With celiac disease, that means reading food labels and finding ways to nourish myself with a gluten free diet.

Before my diagnosis with celiac disease, I don’t think I could fully appreciate how much I had grown and healed as a result of my treatment. So ask yourself, what challenges have you faced in your recovery? How have you persevered? If you have had a setback (or twelve, like me), how have you kept trying to heal? We need to start talking more about our challenges to better understand our limitless and immeasurable strength.