With 2014 quickly approaching, I can’t help but reflect upon the past year. I’ve experienced tremendous growth with my blog; I can’t believe it has over 800 follows and over 10,000 views! I wanted to thank everyone for the support you have shown as I aim to provide other celiacs with support, resources and encouragement!
I’ve also analyzed how much I’ve grown as an person with celiac disease, and during the past two weeks of winter break (finally time to relax and enjoy each day!), I’ve begun to look at how celiac disease has affected me psychologically. And as reluctant as I am to admit it, my journey with celiac disease has not been all rainbows and sunshine. Though my personality type tends to see ONLY the positive outcomes of each experience, I have, in some ways, been affected by celiac disease psychologically (not always in the most positive way). I think we all, in some way, are. However, because the gluten-free diet, in most cases, heals and changes our bodies in almost miraculous ways, most people assume that our medical diets solves all our problems!
What is not usually addressed, however, is the restrictions, trials and hardships associated with the gluten-free diet. I remember the first few months of my gluten-free life; my mother, scarred from the fact that she had, in her mind, been poisoning me for twelve years, restricted my diet pretty harshly. I was twelve, eating only meat and vegetables. Looking back, this doesn’t seem like a terrible thing, but for a twelve year old, thinking you’d never be able to eat a piece of chocolate, or a scoop of ice cream, was, a traumatizing thing. In eighth grade, I was kept from my middle school’s multiple day trip to Washington D.C. simply because my school could not accommodate my gluten-free diet. Thankfully, this led to a classification under the American Disability Act (you can read my blog post about it here), but nonetheless, left some mark on how I perceived my celiac lifestyle.
As I grew older, managing the gluten-free diet became easier; we visited a dietician at the Columbia University Medical Center (Anne Roland Lee, MSEd, RD, LD, who is now the Director of Nutritional Services for Schar USA), who left a lasting impact on my experience as a celiac by showing me how to manage the gluten-free diet, with my favorite treats! Still, my gluten-free lifestyle required numerous restrictions. Was I going on a trip with my marching band? If so, I had to pack extra snacks, meals and foods, as not every restaurant we stopped at, or hotel meal, was guaranteed to be gluten-free. Was I invited out to eat with friends? I could go out, but I had to eat beforehand since the restaurant we went to had no gluten-free options. I remember having to request a gluten-free meal at prom; was it fair that I had to eat broiled chicken and broccoli on such a special occasion, when everyone else was eating food a bit more gourmet?
The first day of college I had to approach the chef at my college cafeteria, by myself, and request gluten-free food. I have to burden my friends, when we go out to eat, by asking if we can go somewhere with gluten-free options. Dates need to be planned carefully, and I lose out on the casual, spontaneous experiences with friends and loved ones by having to calculate and predict (oftentimes unsuccessfully) where, when and what I will be eating.
While I am not one to complain, and I am incredibly thankful for the gluten-free diet (I’ve found something I’m passionate about and want to explore as a future gastroenterologist), being diagnosed with celiac disease at such a crucial age in my adolescence was, in some ways, a trauma. I’m not a newly diagnosed celiac, at an age when I can rationalize the disease (and especially during a time when there are gluten-free options everywhere). I was forced to grow up, as that childhood spontaneity and carefree attitude was shadowed by the restrictions on my lifestyle. There will always be some planning ahead associated with going out to eat, or hanging out with friends. Celiac disease, in some ways, is a trauma. Whether it be the diagnosis itself, the trials of managing the gluten-free diet without it harshly impacting our social lives, or even the fear that arises when we do accidentally eat gluten, the trauma and hardships do not simply go away once we receive the results of our biopsy and blood test.
The past week has been an incredibly impactful one; I finally recognized that over the years, I’ve tried to sugar-coat my disease. No one wants to admit that a change in their diet has affected their lives so much, but I’m finally starting to see that I have been psychologically affected by celiac disease. I overeat a lot, and this week, I realized that it’s not simply because I love food and grew up Italian. It’s because I’ve been much more restricted by my gluten-free diet than I previously thought. When I eat food, I overeat as a means of ‘proving’, in a way, that I am not controlled or restricted by my disease. Even though there are so many gluten-free options available, I’m still traumatized by the restrictions placed on my diet and social life during my formative years (in some ways, I wasn’t allowed to totally be a child). Is it fair that I have to take risks every time I go out to eat, or have to plan ahead, bring my own snacks, and ask others to change their plans to accommodate me? I’m eating gluten-free, but I’m eating too much as a means of ‘defeating’ my disease and showing that it can’t totally restrict me. 2014 is the year in which I am going to explore this psychological effect, and help myself realize that I can control my disease and don’t have to perceive the gluten-free diet as a restriction. Without acknowledging our struggles, our journey wouldn’t be as powerful or impactful to ourselves and others.
I don’t despise my disease; in fact, I’m incredibly thankful for my good health, ability to provide encouragement and support for others, and the ability to be more aware of what I am eating, nutritionally. But I wonder-how have YOU been psychologically affected by celiac disease or a gluten intolerance? What’s your story? Share it below, and let’s show that we are not controlled by our disease, but that we instead can embrace it and use it to help others!