2013. That’s the year it all began. I had no idea at the time that the next few years would be so hard. My whole life I’ve always been a sick healthy kid. By that I mean, I did not have a chronic illness or condition that affected my life on a daily basis, but, I did have a very weak immune system despite all the efforts my mother put forth to keep her children healthy. No amount of vitamins, sleep, hand washing or fruits and veggies could protect me from the “germs” that went around. I managed to catch every single flu bug, infection and cold that went around. Doctors told my mother that “it’s normal for children to get sick all the time, their immune systems are still developing and that she will grow out of it.” They were right, kind of, I did grow out of it a little, but I still managed to get sick more often than most kids.
Not only was my immune system a wreck, my digestive system wasn’t nice to me either. As a baby I had crazy bowels and threw up often. I know, I know, all babies are like that, what makes me any different? Well as I grew up, I threw up A LOT. Yep, the amount of vomit my parents had to clean up is too much to even think about. Looking back, I’m surprised they didn’t question why it was happening. I guess that’s because anytime my mother brought it up to a doctor they told her that it was normal for children to do that because they aren’t used to certain foods. A 5 year old, having constant tummy aches and throwing up is not what I would classify as “normal” but hey what did we really know about food sensitivities or intolerances back in the 90s?
Growing up I was a very busy kid, dancing roughly 20-25 hours a week, going to school & having a social life (lol kind of) I did not really have time for much else. I pretty much lived off of pre-packaged granola bars and snacks in between dance practices and never really knew I had a gluten problem. Heck, I didn’t even know what gluten was or that this type of grain protein would end up being the reason I needed to put my life on hold in the future.
Fast forward all the way to the age of 17 and that’s when it all began.
I ended up getting mono my senior year of high school. I eventually “got better” after about 6 weeks of what felt like death. By “got better” I mean I felt better, but I never really felt quite like myself again. It was not long after that, that my health started to spiral downward. I continued to live my busy life and started college, auditioned for and became a professional dancer and traveled around the country dancing (my childhood dream) all while working a part-time job. I wasn’t kidding when I said I was busy!
I was constantly exhausted but I always just attributed that to my busy schedule. A few years went by, and the fatigue just continued to get worse. In addition to steady tiredness, I developed a ton of crazy symptoms. My legs would start to go numb while I was at work or dance, my feet would tingle, I would get horrible headaches, my body would physically hurt to the touch, I lost about 20 pounds, my stomach always felt like I had swallowed a bowl of nails, I had trouble sleeping, I had a rash on my face, I always felt sick after eating, my fingers would turn into icicles, despite major fatigue I had insomnia, I was moody and crabby all the time (which is totally opposite of who I am, I am very bubbly and social), I had high levels of anxiety and the list can go on for days but I will not bore you with that.
Being the stubborn and overly dedicated person that I am, I refused to go to the doctor at first because it would interfere with my work, dance or school schedule and I was just not willing to sacrifice that to sit in a doctor’s office. At first, I decided to take matters into my own hands (because you know, I know everything – *insert rolling eye emoji*) and try to “fix” the problem myself. I eliminated all processed foods and chemicals from my diet and started to eat mostly organic as well. This carried on for a few months but nothing changed, in fact, everything just got worse.
The day finally came where I had reached my breaking point. There I was on the floor in tears clutching my stomach asking my mom what was happening to me. I honestly thought that I was dying. I had never experienced the level of pain I was experiencing before and it was scary. Concerned, she looked at me and told me I needed to go to the doctor ASAP. It was at that moment that we knew something was seriously wrong with me.
The next day, I called the doctor and made an appointment. They ran a bunch of typical tests on me and a few things came back abnormal, I had low platelets and some low levels of vitamins. I have had low platelets consistently since I was at least 17, so my doctor was not overly concerned about it, but I was. Like I mentioned earlier, I was 17 when I had mono and during that time my platelet levels were extremely low and the doctor assured me at the time that it was because of the virus and that they will go back up in time; so to see that they were still low (not as low as my mono days), had me worried that maybe my mono had returned (it’s not common, but it can happen). My doctor ran a mono screen on me and it came back negative, but I had high levels of Epstein-barr in my blood, indicating a history of mono (which we already knew). With that being ruled out, my year plus long journey of living with an (at the time) undiagnosed chronic illness began.
I did not realize what was in store for me when I began this journey, and I never realized that it would actually end up causing me to sacrifice some of the things that I loved the most in exchange for keeping my body functioning. There was a point in time where I would have at least 3 doctors appointments a week in addition to getting MRIs, Ultrasounds and multiple procedures done. Everything came back “normal” and a few of the specialists that I had gone to see took one look at me and said I was fine WITHOUT RUNNING ANY TESTS assuming that because I am a young, active female that must mean I’m healthy. I had to deal with being asked if I was depressed and even had a few doctors prescribe me strong pain medications and anti depressants WITHOUT actually running a test or evaluation that would require me to take them. I obviously never even got these prescriptions filled because I knew that they would not help what I was experiencing. What 20 year old girl would want to give up her social life to sit in a doctor’s office multiple times per week? None of them I am sure. Heck, the last thing anybody wants to do is let doctor’s visits and outpatient hospital procedures take over their life.
I was starting to lose hope and began to think that I must be going crazy. How come none of these doctors can figure out what is wrong with me? About six months in, I had dedicated every spare moment I had to research. I needed to figure out what was wrong with me, with or without a doctor. I believe that nothing is more powerful than knowledge. I spent hours upon hours trying to learn as much as I could about different diseases or illnesses that I could potentially have based off of my symptoms.
Finally, after seeing countless gastroenterologists, hematologists, rheumatologists, infectious disease specialists, neurologists, oncologists, pretty much every type of doctor that exists, I finally found myself in the office of a doctor that was able to solve this bizarre mystery. This doctor took the time to look through my overstuffed file of medical records to see if she could connect any dots. About 20 minutes into my appointment she looked at me and said, I want to run a few blood tests to look for some genetic markers, but honey I’m pretty sure you have Celiac Disease, do you know what that is?
Of course I knew what Celiac Disease was.
I had previously seen a gastroenterologist and got the typical blood test done that indicated I needed an endoscopy to confirm diagnosis. I got the endoscopy done, and the results came back unclear. I was completely baffled by these results, I did not understand how the results could be ‘unclear.’ I guess the doctor that did the procedure only took 4 biopsies (when you really need like 15) and they came back at a marsh level of 2. What this means is that there was significant damage to my intestines, but not quite enough to indicate Celiac Disease (however, it is possible). What I was unaware of at the time was that I needed to be on a gluten containing diet for accurate results and a week and a half before I had the endo done, I started eating gluten free. When someone with Celiac gets diagnosed and they stop eating gluten, the villi in the intestines begin to repair themselves, thus resulting in a lower Marsh level. (Full recovery of the villi typically takes a year or two for adults) After the results came back I told the doctor that I had been gluten free for a little over a week before the procedure and he said “oh that’s why you probably came back at Marsh 2, but I can’t confirm you have Celiac, sorry.” And there I was again, back at square one. (Sidenote: the gastro was able to confirm I was casein (milk protein) intolerant through one of the bajillion tests that was ran on me, so then I started eliminating dairy from my diet, however, I was not very strict with it at first).
Anyways, my Angel Doctor (the doctor that was able to confirm a diagnosis for me) scheduled the blood tests and when the results came back she delivered the news. She confirmed that I had Celiac Disease. I was relieved at first, to finally have an answer to my never ending list of symptoms that I dealt with on a daily basis for YEARS, but saddened at the same time because I knew that life as I knew it was over. I remember my first thoughts being “no more pizza? No more mac n’ cheese? Oh my goodness, NO MORE COOKIES!? (my favorite)” and bursting into tears. What do you mean I can’t eat any of my favorite foods anymore? Is this for real?
Making a lifestyle change is much easier said than done. I never really understood how difficult it would be for me to cut gluten (and dairy) out of my life forever. When it came down to knowing that my main enemy, gluten, and its trusty sidekick, dairy, were out to get me by slowly but surely destroying my body, the realization became clear to me that my life had just changed forever. I had gone my whole life consuming both of these things without even realizing the effect that they had on my body.
After finally having a name for the thing that completely disrupted my life for a few years, I began to drown myself in research. I spent hours learning everything I could about Celiac Disease and reading about other people’s experiences. It was the information from others that really helped me the most. Everyone’s story I stumbled upon seemed to be different from the other, truly showing all of the different struggles one had to go through to finally begin getting their life back on track. It made me realize that I need to share my story too because one day it may just help someone just how other’s helped me.