One of my favorite accessories is a bracelet, since they add personality to any look. However, for the past five, almost six, years I have been wearing a different kind of bracelet...a medical bracelet. If you have ever had any kind of procedure done or have had to go to the ER, you know the ones that I am talking about. They are paper strips that have your name, your birthday, and of course a barcode on them. I have never really shared anything about my health on my blog or Instagram, but I felt it fitting, since May is Celiac Disease Awareness Month. Yes, I have Celiac Disease.
FACTs AND FIGURES
Celiac Disease is a severe autoimmune disease that affects 1 in 133 people. 83% of people with Celiac Disease remain undiagnosed. Symptoms of this disease are constipation, immense bloating, severe stomach pain, hair loss, rapid and unexplainable weight loss or gain, migraines, and brain fog, among 300 other known symptoms. More severe problems Celiac Disease can cause are malnutrition, osteoporosis, infertility, and cancer.
While it is super important to know the various facts and figures about Celiac Disease, I am not here to write about all the medical terms associated with it. Rather, I am here to tell you my story in order for me to do whatever I can to help others with the disease feel not so alone.
I have been on my diagnosed journey with Celiac Disease for almost six years now. However, I knew something was wrong even before my diagnosis. It all started in middle school when I was extremely thin and then just kept losing weight as a Freshman in high school. For no reason I was dropping pounds and was 5'4 and 82 pounds. This was a scary number for not only me, but also, my family and doctors. However, instead of investigating exactly what could be a physical medical cause of the weight loss, my doctor immediately suspected that I was anorexic (as did several of my extended family members and even "friends" at the time). I wasn't anorexic, nor have I ever been, and my parents knew that. However, we were all puzzled as to why I was losing so much weight. I began eating chocolate cake 3 times a week and stopped working out, but the weight kept falling off.
As I was losing weight, I also noticed that I was having severe migraines that caused me to go to my room, turn off all the lights, and just lay there until my pain allowed me to fall asleep. On top of that, I had my very first job and went to work doubled over in constant stomach pain. I felt self conscious going to a beach or pool because, even though I was only 82 pounds, my stomach was incredibly bloated.
Eventually, I decided to have bloodwork done and my general practitioner's nurse told me that I had some kind of issue with gluten. However, I didn't think much about it because the nurse said she had no idea if my number from the blood test was high or not. So, I just cut out a little bit of bread here and there, but of course, the pain continued. Finally, my doctor recommended that I go see an endocrinologist. The first thing the endocrinologist said to me was, "Hi, I'm Dr. So and So and you have Celiac Disease."
I had no clue what this meant. All I heard was "disease," and that I was diseased. My endocrinologist sat down with my mom and I and showed us my test. The scale was out of 10, so if you were greater than 10, then you had some sort of gluten sensitivity. My number was greater than 100, which meant I had an incredibly severe case of Celiac Disease. We did a biopsy of my intestine to be 100% sure, but I in fact had this disease.
MY NEW NORMAL
That day changed my life forever. I not only had to change the way I had to eat, but also the way I interacted with friends and family. From that day on, going to the grocery store, going to high school, spending time with friends in a public place all became scary. I had to and still have to check every label, eat before any event, not participate in holiday dinners with my extended family, and of course rarely, if ever, eat at a restaurant. I didn't know that things like soy sauce had wheat in it, so I began to research day and night all about my disease.
Mind you, I was in high school when I was diagnosed, so I was teased and taunted about not only being into fashion and art, but also for the way I looked and for how I had to live my life due to this disease. Several of my extended family members and "friends" didn't understand, nor did they try to understand. "Can't you just have a little bit?" "Why are you acting anorexic by not eating anything?" "I could never do what you are doing. Eating gluten free is just too difficult." These were the constant questions and comments that I would get on a daily basis. I felt so unbelievably alone.
Holidays were the worst because everyone would be sitting together eating and I would have to make sure I was sitting away from the table, since I couldn't have a single crumb land on my food. Of course, people saw this as me not wanting to be involved and acting like I was "better" because I was eating salad versus pizza. All anyone saw me as was my disease. They didn't see Emily the girl that's into fashion and creating, rather they saw Emily the girl that has Celiac Disease.
While figuring out my gluten free lifestyle, I realized other foods like dairy, corn, some fruits and vegetables, red meat, and artificial flavors caused me pain and discomfort, so I cut those things out too, further limiting what I could eat. Now, I really couldn't eat anything. At least that's the way I felt and others made me feel.
Celiac Disease also wasn't and still isn't my only struggle. After constant bloodwork, biopsies, MRIs, and other procedures, I was diagnosed a few years later with Osteopenia, Raynaud's, Fibromyalgia, Irritable Bowel Syndrome, and Polycystic Ovarian Syndrome. So, I felt even more "diseased" and alone. However, I eventually realized all of these ailments are a part of me, but they don't define me. I am defined by the person I am and what I am passionate about, as well as my character.
TURNING MY STRUGGLES INTO STRENGTH
Rather than letting myself feel down about my issues, I made it my personal mission to help anyone I come across going through Celiac Disease, as well as anyone going through anything in life. My journey with Celiac Disease has definitely taught me to be a much more empathetic person and it has also taught me the importance of finding your true supporters in life. My mom, dad, and brother were there from the day I was diagnosed and my husband has been my biggest supporter since he met me four years ago. Together, these individuals are the ones I can always count on.
Everyone has something, some people have quite a few somethings like me. However, this post is not to for you to feel bad for me. Rather, it is to be eye-opening for those going through Celiac Disease and health problems in general. If you have Celiac Disease, then I strongly encourage you to know those people that are your supporters and be sure to be open with them because they are the ones that want to help you. Also, on the flip side, I challenge everyone to do their best not to judge people so quickly because you never know what a person is going through. I was going through and still go through a lot, yet I was bullied and still get judged for the way I look and the way I have to eat.
Be kind and considerate to those around you and be that person that is there for people. I hope this blog post (which I know was super long!!) gave you some insight into Celiac Disease and the struggles that go along with it. If you enjoyed this post and want me to share more about Celiac, please leave me a comment here or on my Instagram!
Know who you are and know you can overcome anything!