The diagnosis process for Celiac Disease can take anywhere from weeks to years, depending on the patient. Celiac is an autoimmune disorder that can present itself in a myriad of ways, making it particularly difficult to diagnose. My journey to a diagnosis was relatively short, though the process was still paved with frustration, disappointment, and uncertainty.
In February of 2018, I got sick. I was throwing up every single night, I had headaches, and was tired 100 percent of the time. My immune system had plummeted to the point if someone so much as sneezed near me, I knew I was in for a rough week. Not to mention, I was losing weight pretty rapidly. My first instinct? Take a pregnancy test. I had just gotten married the year before and, though I was on birth control, that just seemed like the most logical explanation – negative. So, I made an appointment with my OBGYN who was surprisingly dismissive. I explained all of my symptoms and the length of time I had been struggling. She did not want to hear any of it, the test was negative, she couldn’t help me. Little did I know, this would kick off a long battle with dismissive doctor after dismissive doctor.
Little did I know, this would kick off a long battle with dismissive doctor after dismissive doctor.
Next, I went to my primary care physician. His theory? I must be pregnant. Fast forward two weeks, I had undergone 4 different pregnancy tests and two series of blood tests. Everything was returning normal, so in my next meeting with my doctor I told him I had a college roommate who had been diagnosed with Celiac Disease and that I would like to be tested for that. I was instantly shut down. “We aren’t there yet. There’s no need to jump to conclusions. You aren’t exhibiting the normal symptoms for that.” I’m no doctor, so I blindly followed - trapped in this horrible cycle of getting sick, going to the doctor, blood tests, doing my own research, to being dismissed again – thus starting the cycle over. Finally, my primary care physician sat me down for a difficult conversation. He explained to me that he didn’t think there was anything else he could do for me. He referred me to a doctor who specializes in digestive diseases. Their waiting list was 1 month long, I expressed concern over this time as I was still losing weight and getting sick regularly but there was nothing to be done. So, I waited.
I made it to my first appointment with a gastroenterologist and the first thing they do is, wait for it, give me a pregnancy test. Now bare in mind, we are about 2 months in at this point and I have to pay for each one of these tests. So, my new husband and I, trying to field our early twenties, are also dealing with vast medical bills. When the test came back negative, they decided to run a number of blood tests and scheduled me for an ultrasound of my abdomen and an endoscopy. This gastroenterologist also explained to me that should all of these tests come back normal, they would need to consider referring me to an oncologist. Yes. You read that correctly. I asked about Celiac Disease again and told him I wanted to be tested for that, he said they could test the culture they take from my endoscopy for Celiac, but that he really didn’t feel that is what I have. I asked him why I couldn’t just undergo the simple blood test for Celiac now – “we aren’t there yet.” Okay.
I was given instructions to contact the surgical wing of the hospital to schedule my endoscopy. The wait? Nearly three months. This is where I lost it. For those who know me well, know my patience is fairly thin… particularly when I feel like I am getting the run around or am being taken advantage of. I told the woman on the other end, “I am currently marked a ‘medical mystery.’ I have lost almost twenty pounds, and am still throwing up every single night. I will not be taken advantage of due to my young age or gender. Now I know that my condition must be considered more critical than a three month wait period for a test that may or may not give me answers.” They fit me in that week. Ultrasound came back normal, and all tests came back normal on the endoscopy… except the Celiac test. They called and told me they believed I had Celiac Disease, but that I would need to come in for a blood test in order to confirm. Insert eye roll here.
Fast forward a couple weeks later, I was called in one last time to go over what to expect. I was handed a scary list of foods I was no longer allowed to eat. A male doctor sat across from me and told me how lucky I was that it was something I could manage with a simple diet change; however, he also added in the gentle reminder that many gluten free foods have extra sugar and I should look out for that lest I get fat. I asked what would happen if I didn’t follow a gluten free diet and he explained that my body had undergone a lot of damage in the 23 years I ate gluten and so I could experience seizures and, possibly, eventually, even death. The answer seemed obvious to me – cut out all gluten. The doctor further suggested I check all beauty products, all shampoos, conditioners, body washes, lotions, absolutely everything. As I walked out of that office, with a packet of instructions for my new normal, I felt…. Angry. Angry at the doctors for making me wait so long for this answer, angry at my body for failing me, angry at the universe for yet another hurdle.
As I battled through getting to know new products, and throwing out anything wooden in my kitchen that may have come in contact with gluten, and checking every piece of make up I had, and offering my friends and family the remnants of my pantry, I found a lot of the same dismissiveness I had been experiencing for months but from everyone around me. Telling me being gluten free is nothing more than a fad. There’s no such thing as a gluten allergy. It’s all in your head. You’re just being high maintenance. Every single time, I had to muster up the strength to ignore them, to explain the diagnosis and hope they would keep their opinions to themselves, because I didn’t feel strong enough yet to stand up for myself. I had been doing nothing but stand up for myself for months and to be completely honest, I was tired. And still pretty angry. I never imagined how isolating it would feel to sit at a table with all of my co-workers and watch them eat a birthday cake while I can’t. Or to go to dinner with my family and not be able to order anything but a salad… with no croutons… We live in a world that is very food centered. Many social gatherings involve food, celebrations often include something sweet, holidays all come with large family gatherings over a nice meal and coming into these things with food limitations can be really difficult. Don’t get me wrong, these feelings aren’t anyone’s fault, I am in no way insinuating that it is anyone's responsibility to change the way they celebrate or live in order to make me feel included, but even with this understanding it is easy to feel resentful… not of anyone else necessarily, but just of the situation itself.
I was really lucky, though, because my entire family did everything they could to make this transition easier. My mom even went gluten free with me in solidarity and ended up feeling better than she had in years. My in-laws did their own research and found gluten free recipes to share with me that I had never even considered. My husband and I did insane amounts of research on what products are best and how to convert favorite recipes into gluten free recipes. He stuck by me through every experiment and every taste test and today I would say I am a fairly competent gluten free cook. The constant reassurance my family provided allowed me to grow comfortable in my diagnosis… maybe even a little excited. Had I never been diagnosed with Celiac Disease, I never would have found this passion I have for gluten free cooking. With every passing week, it gets easier and easier. Of course, I still have rough days, I still have moments of uncertainty, and after two years I even still get “glutened” from time to time. But it is important to take those days and moments in stride and come out stronger on the other side. I promise, it is possible to persist, even if it feels impossible right now.
Now, I know what you’re thinking. Why would I want to take pointers from someone who considers themselves “fairly competent?” Here’s the thing, I am not a professional chef by any means. I am a law student and likely the least domestic woman you’ll ever run across (just ask my husband). I aim to cook things that are simple but still delicious. Simplicity is a luxury gluten free cooking often does not afford, but my laziness is far more powerful than the traditional ins and outs of gluten free cooking. This blog should prove to you that if I can do this, so can you. Gluten free cooking is a skill, absolutely, but one that you can master if you want to. If your journey looks anything like mine and you are feeling overwhelmed, angry, uncertain, I have been right where you are standing. It can be really difficult to get through all of the physical and emotional tolls the diagnosis process puts you through, but I promise it does get easier and you, too, will persist. Tune in to the blog, Instagram, and TikTok for some of my family’s favorite recipes and products and more on my Celiac journey.