Being diagnosed with Celiac Disease has been a huge life-changer for me. It not only changed how I eat, but how I live and look at the world. I am a gold standard, endoscopy diagnosed Celiac. Yeah, I got to join the ranks of the elite 1% of the population with CD in 2015. I use 2015 as the benchmark for my diagnosis because this is when the testing initially began. However, my endoscopy was performed in July of 2016. My diagnosis of Celiac Disease solved a nearly 20 year mystery!
My Early Symptoms
I started having symptoms in high school, but they were easily explained away so I didn’t pay much attention to them. As I got older, new symptoms emerged that were also misdiagnosed and/or ignored. My main symptoms were migraines, brain fog, fatigue, and joint pain. Arthritis at a young age is very prevalent in my family, therefore everyone assumed I had juvenile arthritis. Interestingly, I never regularly experienced GI issues. I would have the occasional episode, but nothing out of the norm or alarming.
As the years progressed, so did my symptoms. My migraines were debilitating at times. I had several MRIs and was even seeing a neurologist to monitor them. There were many difficult years due to the migraines, fatigue, and constant body pain. I was diagnosed with fibromyalgia at one point and placed on several medications. The meds didn’t help and the diagnosis never really felt right. I knew something was wrong, but doctor after doctor explained my symptoms away, misdiagnosed me, or simply dismissed me altogether. I was beginning to feel like I was crazy. Like maybe I wasn’t sick, and it was all in my head.
Infertility
As if living in constant physical pain wasn’t enough, I experienced infertility as well. We stated trying to conceive shortly after getting married in 2010. By the summer of 2011 we had not been successful and began infertility treatments using Clomid. I was able to get pregnant immediately, but the pregnancy wasn’t viable and I had a miscarriage and subsequent D&C at 12 weeks. This began the downward spiral of emotional wreckage for me. Over 2 years I had 3 miscarriages, one D&C, 9 cycles of fertility drugs, and countless lab tests before finally getting pregnant with my oldest daughter. Thankfully, Makelti was born healthy and full term in mid-2013, three years after we started trying for children.
Mystery Solved
Finally, after giving birth to my second daughter, the dam broke. I was seeing a rheumatologist at the time who was monitoring me for Rheumatoid Arthritis. For several years my labs were normal, but my physical exam was not. My rheumatologist was the first doctor to truly listen to me and try to find out what was going on. It was her diligence in checking my labs that finally turned up an abnormal result and led to my referral to a gastroenterologist. The GI doc ran further labs and eventually performed an endoscopy.
Incredibly, after almost two decades, I had an answer. I had Celiac Disease. And the treatment was simple enough, go gluten free. Sounds easy, right? Not so much, at least not at first. Frankly, it was overwhelming. I had no idea how many things contain gluten. After weeks of being gluten free I wasn’t feeling better, so I dug deeper. Turns out, my ibuprofen had gluten in it. That’s right folks, my anti-inflammatory was causing me to have an inflammatory response. Ponder that for a few… seems like they would cancel each other out, right!? Wrong again.
Going Gluten Free
One of the toughest things for me having to live gluten free is feeling safe to eat. I realize that sounds pretty dramatic, but it’s the truth. For all you non-Celiacs, try to image having to analyze the ingredients for everything you put in your mouth, as well as where and how it was harvested, processed, and prepared. This means food, medication, make-up, shampoo/soaps, lotions, and even toothpaste. Then think about going out to eat and having to explain to every server, in every restaurant, every time, that you can’t have gluten because you will get very sick. Can you imagine having to tell everyone a personal health problem you have every time you want to eat or have a cup of coffee? It’s exhausting and sometimes embarrassing. I finally got tired of trying to educate the masses and just tell servers that I have a severe allergy to gluten. Society as a whole can wrap their heads around food allergies, but understanding autoimmune diseases is pushing it.
So that pretty much sums up my journey to learning I have Celiac Disease. My house is a “Gluten Free Zone” so I can have at least one place to safely prepare food and nourish my body. Luckily, I have the most supportive husband a girl could ever ask for! I’ve learned what products are tasty, and which are not. And after spending a small fortune on GF products, I now know how to be a bit thriftier when I shop. Eating out is still a challenge but I’m learning to navigate that as well.
Accepting my New Reality
For the most part it’s about acceptance. I have finally accepted that all this is my new normal. Does it suck sometimes? Absolutely! I would love to grab a slice of pizza and have a beer like I used to. However, that’s not my life now. Truth be told, being diagnosed with Celiac Disease may have very well saved my life. Before my diagnosis, my diet was terrible and I simply did not take care of myself. I am now acutely aware of what I put into my body. And I listen to what it’s telling me because I have to. So having Celiac Disease is not the end of the world. In my case, it’s the beginning of a better, healthier life.
