Celiac & me. What I have learned from chronic illness…
Throughout this month, I have been taking the time to sit and reflect on the last four years. May is Celiac awareness month and I have wanted to write about my journey from diagnosis to now. There is so much to say… I could go on and on about the rollercoaster that comes with autoimmune diseases / chronic illnesses. The reality is that my personal experience with celiac disease thus far has been rocky (to say the least). No one really tells you when you are diagnosed that there is a huge learning curve when it comes to Celiac (especially if your doctors do not support you through diagnosis, which in talking to other people with celiac, I would say is the norm, unfortunately).
I have had to do extensive research on my own after the initial diagnosis. After my biopsy results came back positive, I was told to “go gluten free” and that was that… but, it is not that simple. In fact, it is more complicated than that in every way. Starting out, I wasn’t informed. I was very much in the dark about my newly diagnosed chronic illness. I hadn’t heard about cross-contamination, hidden sources of gluten, nutritional deficiencies, none of that. All I knew for sure was that I was gonna have to start to find gluten-free foods I enjoyed because Celiac wasn’t going away. With Celiac, a gluten-free diet is a forever thing – which is fairly daunting – and might I say, overwhelming?
advocate for yourself
What I learned very quickly is that you have to take your health into your own hands. You HAVE to advocate for yourself, educate yourself, support yourself & do your own research when it comes to living with Celiac. I wish I had known that when I was diagnosed. Rather, I learned to fully trust medical professionals (which unfortunately, is not a wise decision when dealing with the American health system). Looking back now, I was fed SO much misinformation about my own illness by countless doctors. In fact, my first attempt in being diagnosed resulted in a mis-diagnosis (& I found out they had done my biopsy wrong MONTHS later when a fellow Celiac, who is by no means a medical professional, was reading through my lab report and noticed the error).
I didn’t find the medical support I needed (& deserved) until I met with a holistic doctor in 2018 and then started going to see a doctor at the University of Chicago Celiac Disease Center in 2019. I FINALLY found doctors that I trust, but the fact that it took me nearly 3 years (& other people much longer) is not ok. The gap in medical support for anyone dealing with ANY autoimmune disease is very apparent. Unfortunately, these problems are very real and affect millions of people who live with mystery symptoms and chronic pain on a daily basis.
For me, it all started with trembling fingers. The doctors initially thought it was anemia but a blood test would later reveal elevated antibodies for celiac. This lead to a confirmed diagnosis after finally undergoing a second (correctly-done) biopsy.
when things are looking up
Four years later and one more biopsy later (3 biopsies in total + a whole lot of blood work), my doctor confirmed that I am, indeed, healing.
Four years. That is how long it has taken for my intestines to heal after years of damage… but it’s complicated. Yes, the villi in my small intestines have grown back and are functioning properly but I will always live with celiac disease (unless a cure is found). It is okay though. I have learned how to cope. I have learned the best ways to take care of myself, to advocate for myself, and to ask for help when I need it. Despite the challenges, Celiac has taught me many lessons: about healing, about life, about overcoming – and for THAT, I am grateful.
the bright side of Celiac
Going gluten-free, I have learned so much about food, nutrition, my own body and the world around me. My journey sparked a lot of deep questions about the US food system, the medial system, the government and generally, everything that holds our modern society together. A lot of the things I have been looking into are unsettling (to say the least), but I am seeking truth and that has made all the difference. When you start to realize the systems in place value money over the good of humanity, you realize how important it truly is to stand up for yourself.
Knowledge is power and my personal research has revealed that to be true on many levels. The truth will set you free and the more you learn about the world around you, the better decisions you will be able to make for yourself. I’ve been taking care of myself by prioritizing self care, eating cleaner (organic, natural, non-processed foods), spending more time in nature, moving my body and taking space to heal when my body needs it. I’ve learned to listen to my body and to practice being in tune with my body. It’s all about giving yourself space to give yourself what you need, when you need it.
my spiritual awakening
I wholeheartedly believe that Celiac played a huge role in my spiritual awakening. Seeking support for chronic illness is what brought me into my local holistic healing center and got me interested in holistic healing, my general wellness and emotional healing. I am very much still in the beginning of this new spiritual journey, but it has opened up my soul to new practices, new beliefs systems and an entire new way of approaching this world. I’ve learned the importance of personal healing (spiritual, physical, emotional, mental) and it has shifted my lifestyle choices dramatically.
broadening my (food) horizons
Once upon a time, I lived on chicken nuggets, mac n’ cheese and pizza. Those were the days… but time has changed and Celiac (+ now eating completely dairy-free) has forced me to try new things. I am grateful for this because I have since experienced so many new flavors, ingredients, cooking styles and even culture through food. Eating is complicated when your physical health is so closely tied to food but you quickly learn to get creative in the kitchen & I can honestly say that has been so fun. I’ve developed a newfound love for Latin American food, colorful smoothie bowls, and yes, even brussel sprouts.
Here are some photos of yummy gluten-free meals I have gotten to enjoy over the past four years & across many states and even some countries! I am so grateful for the many companies and restaurants that work so hard to provide safe foods for people with Celiac. It is because of their hard work that I can go order anything on the menu at Salt Creek Taco, try Columbian food in New Orleans or get a safe birthday cake from Sweet Ali’s. These special moments make me feel included again and not having to worry about a plate of food being harmful provides so much peace and normallcy that I (unknowingly) took for granted for so many years.
I have overcome so much. I am always experimenting with better ways to take care of myself and finding new ways to eat safe food. Like most things, living with an autoimmune disease is complicated but there is always a silver lining. There is always ways to find happiness in the darkness and finding the power to move forward and overcome, it is empowering. If I leave you with anything, it is this:
Healing is a process. Healing is not linear. Some days are good, some days not so good and then one day you find yourself years later, looking back, seeing how far you have come. That is growth.
peace & love -kendall
If you would like to learn more about Celiac, here are some great resources: