The aroma of breakfast burritos wafts through the air as I watch my friends eat, igniting the ever-familiar battle in my stomach.
“Oh, I ate before this,” I say to a concerned parent with a smile on my face as my stomach rumbles in disagreement.
Unfortunately, this used to be my reality: constantly dismissing my hunger to make others’ lives around me more convenient.
I have celiac disease, a chronic autoimmune disease where consuming gluten — a protein in wheat, barley and rye — triggers an immune system response that damages the lining of my small intestine. In other words, I have a severe gluten allergy, but instead of triggering anaphylactic shock that can be prevented with epinephrine, long-term gluten exposure can lead to malnutrition, osteoporosis, neurological issues and a higher risk of certain cancers. The only treatment is to maintain a strict, gluten-free lifestyle.
I was officially diagnosed early June, but my symptoms gripped my life for years as I struggled to raise my voice and advocate for myself to get tested. The process of navigating this diagnosis and new way of living transformed me: I learned to speak up about my preferences, whether it means explaining my dietary restrictions at social gatherings or educating friends and family about my condition. This journey, while challenging, ultimately made me more confident. I no longer shy away from vindicating requirements; instead, I embrace the opportunity to educate others without putting their comfort above my needs.
Stomach issues plagued my whole life; bloating, nausea and discomfort seemed to follow me no matter what I ate. When I was seven years old, I cut out dairy, self-diagnosing as lactose intolerant, but I was still facing symptoms with a dairy-free diet. I would pound back Lactaid, trying to convince myself that, maybe, if I took more, then I would finally feel okay.
I even went vegetarian for two years, thinking the root of my problems may be meat, but that was deemed ineffective when I continued to cry in pain after eating. I brought my pain up at every doctor’s appointment, but I was dismissed time and time again.
“Everyone feels like that after eating,” they would tell me.
As I grew older, I accepted my discomfort. It felt like there was no way out. After moving to San Diego, I ran through my basic lists of problems with my new doctor: migraines, stomach pain, knee pain, etc., just the rundown of ailments that had become a part of my life as my search for answers remained unsuccessful. When discussing my stomach pain, my doctor mentioned going lactose-free, trying an anti-inflammatory diet or including more fiber. Everything she listed was something I already tried. I begrudgingly brought up the possibility of celiac disease, assuming she would dismiss it like my previous doctors. But instead, she listened to my concerns about gluten triggering all of my symptoms. She explained that celiac disease is a genetic autoimmune condition that can be triggered by environmental factors rather than a disease present from birth.
It felt so alleviating to speak up for myself and actually be heard. Before I knew it, I was being poked and prodded for laboratory tests. I got blood work to detect specific antibodies that indicate immune system reaction to gluten. The results also revealed that I was genetically predisposed to having celiac disease. This prompted more testing, including an endoscopy to examine my intestines and take samples to make an official diagnosis.
Even with all this testing, no one listened to me. When I shared the news with my grandfather, a gastroenterologist, he doubted me, branding my concerns as dramatic. I often felt invisible, as though my pain was being diminished by others who could not see my struggle.
In early June, I woke up to a knock on my door. My mom came in and read a message from my doctor, stating my official results. I held my breath, caught between excitement and dread. Part of me was relieved to finally have an answer, to validate my intuition that something was wrong, while another part feared what this diagnosis would mean for my life. I felt a rush of relief as my mom read my diagnosis, but also an immense feeling of anxiety.
My lifestyle would need to completely change: every decision I made revolving around food would be deliberate and calculated. I would no longer be able to eat at my favorite restaurants or rejuvenate myself after a long, stressful day with a warm, gluten-filled comfort meal. Travelling would become 10 times as stressful and affording a gluten-free diet would be costly. But what intimidated me most of all was the prospect of speaking up and having to advocate for myself constantly in front of others.
Communicating my needs was never my forte. Even with the process diagnosis, I felt like my symptoms were not valid, which prevented me from speaking up to my parents and doctors in the first place. However, getting diagnosed was a pivotal moment for me, not only because it provided clarity about my symptoms, but also because it taught me the importance of advocating for myself.
Initially, I struggled to recognize my own preferences in favor of being convenient for others. This hesitation left me feeling unheard and isolated, even though it was my own need to people-please that I chose over eating comfortably. I would just watch silently as someone reached their hand into my chip bag after I repeatedly asked them to pour it, or give up on ordering food when a server told me an item was gluten-free but fried in a shared fryer. I was so afraid of being a bother; I never wanted to make someone go out of their way to accommodate me.
Keeping my frustration bottled up inside made me more anxious, feeding into my food anxieties, forming a cycle of dissatisfaction and self-doubt. Each time I stepped into a social situation, I felt a familiar knot of anxiety tighten in my stomach, overshadowing my enjoyment of the moment. The more I suppressed my needs for fear of causing inconvenience, the more my discomfort amplified, making it harder to advocate for myself in the future.
I realized that, by silencing my preferences, I was not only neglecting my own well-being but also missing out on authentic connections with others. The journey toward self-advocacy became essential, as I understood that my feelings and needs were valid; if respecting my restrictions is an inconvenience, then they do not respect me as a person. It was time to break the cycle and embrace the idea that taking care of myself did not mean being a burden to anyone else.
Living with celiac disease transformed my understanding of self-advocacy, turning a health challenge into a powerful journey of personal growth. Each day presents opportunities to express my needs and educate others, reinforcing the importance of prioritizing my health and comfort. While it can sometimes feel daunting to navigate social situations or restaurant menus, I approach these challenges with newfound confidence and resilience. This journey taught me that advocating for myself not only empowers me, but also provides a platform to raise awareness about celiac disease, helping others to understand the significance of different dietary needs. Ultimately, my experience is a testament to the strength that comes from embracing challenges and using them to inspire understanding and compassion. My path towards diagnosis pushed me to raise my voice, teaching me that my voice matters.
