People are misdiagnosed every single day. Why? Sharing from personal experience can be a really tricky thing to do. But, I believe it can be extremely helpful for certain circumstances. I want to share my story, and if I reach anyone out there in the meantime, I know it’ll be worth it.
The summer before my junior year of high school was one of the most horrific times of my life. It seemed that everything was crumbling before my eyes. I spent most summers volunteering at Wilson Hospital, working different units in the hospital. I was working in the nurse’s station in Ambulatory Surgery one day when I started to feel ill. I wasn’t looking at anything graphic, nor was I taking care of anyone at all. I was just sitting in a chair waiting for instruction on what to do. Just like that, my vision went blank. For a solid six minutes I could not see a thing. Everything was completely black. Along with this, I was in such a terrible sweat that I felt like I needed to change my clothes. I decided to get up, I know, stupidest decision of my life, and go find some water. Remind you I cannot see squat. I turned the corner, and that is the last thing I remember. I went straight into a metal cart, and then head first into the ground.
I was woken up by the nurses, and then heard over the PA system of the entire hospital that Medical First Response was needed in Ambulatory Surgery. Perfect. Exactly what I like, embarrassment. After this day, I was terrified that this was going to happen again. I decided to go back the next week, as embarrassed as I was, and ended up leaving within an hour, too afraid of the “what if”.
Ah, junior year of high school, I can remember it like it was yesterday. Awful. The first three days of junior year were supposed to be great. See all my friends again, excited to meet my teachers, and see who was in my classes. The three worst anxiety attacks of my life occurred on these three days. The second and third days of school, I went home at lunch, unable to stand being there. I was way too scared of what could happen, based off of that one scary experience over the summer.
I learned quickly to deal with this anxiety and worrying of what might happen, and focus on the importance of junior year. Besides, I had SATs, ACTs, and APs to be concerned about.
Fast forward a month and I got the same old fall sickness I get every year, a sinus infection. The only thing that was different was this sinus infection would last a week, then come back in about four days. This on and off of sinus infections and colds lasted until mid-December, when I got the flu. Never in my life had I gotten the flu… and oh man, I hope I never get it again. After missing a week of school, and still barely recovering, my parents and I decided to get some tests done. After visiting my doctor (and taking 10 vials of blood), we were hopeful that we would get some kind of answer as to why my immune system was so low. At this point, I had lost about 10 lbs, lost my appetite completely, lost a decent amount of my hair, was taking advil constantly for terrible joint paint, and Pepto alongside that for the persistant nausea.
Finally! The tests came back. Nothing. The doctor reminded us that this may be a good thing, I didn’t have anything seriously wrong with me. Let about a week pass, and it’s now January. Still looking gray as ever, clothes are not fitting, and I was looking very boney. We decided to get some more tests done… still nothing found.
A rheumatologist was actually the one to advise me to get more blood taken to test for Celiac Disease, something I have never heard about in my life. Doubting that I had whatever the heck this disease was, the results came back, positive.
I can remember walking to the cafeteria in my high school when I got a call from my mom saying I had Celiacs, and immediately welled up in tears. I had no idea what was to come, what this meant, or even if it was treatable.
After an endoscopy and biopsy of my stomach and small intestine, it was confirmed. Okay, pause. For those of you that know me, I am terrified of blood work, let alone surgeries. Now, granted an endoscopy is like two and a half minutes long, I was still absolutely hysterical. Oh…and I was back in Ambulatory Surgery (the dreaded scene of me passing out), blah still freaks me out. The only good thing to come out of that day was the priceless videos of me on Anesthesia after I came out of the procedure.
This is definitely one of the longest articles I’ve written, and it may have put some people to sleep, but if there’s someone out there that didn’t get tired reading this, and has a hunch that they might have Celiacs, or even something similar to that, and relate to my symptoms, I hope this helps you make that decision on whether or not to get tested. There are approximately three MILLION people in the U.S. that have Celiac Disease. But, get this, 97% of them are undiagnosed. 97%! I am considered lucky to have only waited 8 months to get diagnosed, because there are people out there that wait years, heck, half of their lives, to finally be diagnosed by a doctor.
Auto-Immune diseases ARE a big deal! Going undiagnosed can cause some major health problems later in your life. If you decide to not follow a gluten free diet, or never get tested at all, you can develop major heart issues, stomach or intestinal cancers, and so many more serious health issues.
Whether it’s for Celiacs or not, don’t let the little things go unnoticed, get checked out. It is way better to be safe than sorry.
