Hello everyone. It’s good to be back. Vacation was awesome and quite medicinal. I’ll tell you all about it in a future post, but for now I am in catch-up mode with my life a bit.
So today I thought I’d share an unbelievable story about a woman’s amazing journey of living the life of an undiagnosed celiac.
A quick set up: I posted an article on my Facebook page yesterday from the Washington Post about a woman who needlessly suffered for years before finally being diagnosed will celiac disease. When I shared the article, I also posted a link to my Doctor Horror Stories page, where many of my fellow celiacs have posted their journeys.
Well, I got a few more submissions yesterday, two of which practically brought me to tears. It was either that or the raw onion I was eating, but I’m pretty sure it was the story.
Anyway, here’s her journey. It’s a bit long, but I promise it’s worth the read. It saddens me to no end that people have to needlessly suffer like this when a simple test can provide all of the answers. A cynic would say that since there is no money in it for the doctor, a celiac diagnosis isn’t profitable and therefore is not always checked. As I’ve said before, good thing I’m not a cynic.
Take it away my fellow celiac…
Since I was little, I was always sick, always having tummy aches, always throwing up or having diarrhea, always complaining of pain, injury or other unexplained illnesses. Every virus or bug, I caught it. The most common response I heard was to “stop being a baby” or that it was “growing pains” and it would by pass. I remember being about 10 years old and going shopping with my parents and crying the entire time because my feet, knees and legs hurt so badly. My father ended up carrying me on his back (a 10 year old is not easy to carry) to help relieve the pain. After being diagnosed as an adult, my mother commented that she thought I was just making it up all those years, trying to get attention, and apologized for not taking me more seriously sooner.
My worst period pre-diagnosis was between age 13 and age 22. By middle school, I had already had 12 fillings in my teeth even though I brushed twice daily and didn’t really drink soda. I had come to be known by my teachers and classmates as the girl who was chronically injured and chronically tardy. Only I wasn’t always late to school, I often was stuck in the bathroom praying to God it would stop before first class started so all I would miss was homeroom. I was sick constantly. Roughly 2 to 3 days a week I’d have an episode of sickness – usually diarrhea, sometimes vomiting, sometimes both – that would last anywhere for 1 to 8 hours. I had chronic migraines that I never told anyone about until I was going through celiac diagnostic tests. I thought no one would believe me and, like everything else, I would just have to learn to live with it.
My primary doctor had decided I had IBS (translation: she didn’t know what it was) and would just throw a different medication at me every time I’d land back in her office because I needed a doctor’s note, yet again. But no med she put me on for IBS ever worked and I just kept getting sicker and sicker. One example that sticks in my head was my senior year of high school when my bible quizzing team was headed to the national championships in Indiana. We were somewhere in Ohio and had to pull over at a hotel because I was sick. I spent 3 hours in the bathroom while my entire team waited in the parking lot. Everyone was upset with me. Several members wouldn’t talk to me. My mom kept checking on me and asking how I was. The hotel employee kept suggesting we call an ambulance. And we were late arriving to the championships, which prevented us from taking 1st place.
During that decade of my life, I was called “skinny fat” after I shocked the shit out of my classmates when I didn’t have a baby. I had skinny little arms and legs but a huge protruding belly from being constantly bloated and malnourished, so much so that everyone thought I was pregnant. When it turned out I wasn’t with child, they called me the skinny fat girl. I would wear baggy clothes to try and hide my gut and hated wearing dresses and NEVER went swimming because I was so embarrassed.
I spent my 4 years of high school in adaptive gym because I was always injured. I tore the same tendon, the plantar fascia, three times in each foot. I also broke the sesamoid bone (you’ve probably never heard of it, it’s the small bone in the ball of your foot) in both feet, and was diagnosed with tarcel tunnel – which is like carpul tunnel but in your feet. It is rare in teens. Needless to say, I am really good at ping pong and shuffle board because I spent 4 years playing those while everyone else ran track, played basketball or softball. By my senior year, I was told by my podiatrist that if I would likely not walk by age 40 because of the chronic issues in my lower extremities.
During those years, I was also a holy terror. I could not control my emotions, so I rarely spoke. Because I was so quiet, and because when I did speak was not nice, I had only a few “friends.” Of course, my parents and doctor chocked my attitude up to being a teen and having hormones. But I’m pretty sure my mom constantly wondered where she went wrong as a parent because she I would have weekly knock-down-drag-out fights, usually about nothing. Between the constant pain, the headaches, the sickness, the frustration, the stress from always being late or having to catch up, AND the hormones, I was a short fuse. But no matter what, I couldn’t’ control my fuse. Even birth control didn’t help. I would cry for no reason, become enraged over nothing at all and would often feel like I was watching this girl flip out only to realize it was me. I hated who and how I was but I felt helpless because I could do nothing to stop it.
Like the woman in the Post article, I was hopeful that college would be different. But based on my rough math, in the 5 years it took me to graduate, I missed about 30 percent of my classes because I was so sick. By my junior year, I had my own Americans with Disabilities coordinator who worked with me to get special accommodations that allowed me to miss classes due to my unknown-at-the-time illness without repercussions. The ADA order I obtained, signed by the VP of Student Affairs at my school, also required my professors to allow me to make up tests or anything I missed due to being sick. For the first time, it felt like someone believed me, someone listened.
My ADA coordinator was a blessing. He pushed me to keep seeing different doctors and identify what was plaguing me. He went to bat with the administration when they denied my request to move off campus early so I could live somewhere with a kitchen and prepare all of my own food. See, my college required all students live on campus through their junior year unless they lived at home with their parents. You also had to buy the meal plan whether you lived on or off campus. My parents lived too far away, and I didn’t eat the food. My mom was worried after she learned I spent an entire year living off canned green beans, carrots, pita and hummus because that made me less frequently sick. With my ADA coordinator’s help, I got my waiver and was able to both move off campus and not pay for the meal plan. Most of my professors were extremely sympathetic when I would miss class, run out halfway through or come in late looking like death washed over me. It was becoming clear to people that I was not faking it. That is because it was also getting worse.
The summer before my 5th year of college, I came to my mom in tears. I had just been reprimanded by my boss at work for being late and disappearing for hours at a time, and was told I had one more chance or I was fired. Shit was real. I told my mom I wanted to do whatever it took to make this stop and that I couldn’t live like this any more. I knew it would cost a fortune (and did) but she said yes. We spent that summer at various doctors until I landed at a gastroenterologist. He first tested me for just about everything under the sun – Crohns, Colitis, ulcers, gastroperesis, H.Plylori, Giardia, Ulcertive colitics, colon cancer, intestinal cancer, stomach cancer – and I drank more barium than is probably safe.
Then the doc said he was running another blood test. A week later, he called me in and said he needed to repeat it, because the number was too high and he thought it was an error on the lab’s part. When it came back the same, he said the test indicated I had Sprue, also known as Celiac disease, and he needed to do more tests to be sure. He went out of order, but regardless, after cutting out gluten and having the biopsy, he called and said “You have Celiac disease. The only treatment is to follow a strict gluten free diet. Follow the diet and come back and see me in a month.” In a month, I walked into his office, feeling better than I had in years, possibly my entire life. It took several years to truly feel well and to heal, but it was clear to me within days that we finally figured it out. I remember crying because I was so happy. It would stop.
Yes, the struggle of living with Celiac disease and eating gluten free is real, but it is nothing compared to the hell of living undiagnosed with this disease. I am so thankful that doctors are starting to learn how to ID this so hopefully people don’t have to live as long as I did with the pain and suffering this disease can cause.