Celiac’s Disease isis a member of the autoimmune disorder family (which means that when your body realizes that something – such as a cold or a tummy bug – is attacking, your body attacks itself instead of attacking the bad germs).
General symptoms of Celiac’s Disease include diarrhea, bloating, gas, swollen ankles, anemia, fatigue, Vitamin K deficiency and excessive bruising and bleeding. Sounds lovely, eh? And there are SO many more things that can be related to the disease – each person can react differently. And since Celiac Disease is an autoimmune disorder, persons with the disease are very susceptible to developing additional autoimmune disorders.
This is my story. It’s a story that most people don’t know, and that has always been very difficult to recount, until just recently. There is so much pain (physical and emotional) associated with this story for me, but I see it like this: if I can help just one person by telling this story…then I’ve been able to take a step in the right direction. Hopefully, I’ll just keep on taking those steps!
I was 18 years old, and had just finished my first semester away at college. Lee University in Cleveland, Tennessee, to be exact. I was flat out exhausted from the exams I had just gone through, not to mention the tour I had been on with the Ladies of Lee Choir. I hadn’t been home since I left in August, and I was thrilled to be back for Christmas break!
But about halfway through my break, I realized that I should have felt at least a LITTLE more rested. And I didn’t. And I couldn’t chalk up the constant sick-to-my-stomach feeling to the cafeteria food anymore. I was home, eating mom’s cooking and sleeping in my own bed – I should have been fine.
In fact, I distinctly remember that I had a friend come from out of state and stay with us for a few days during that break. She didn’t understand why I didn’t want to go out and have fun – and I remember telling her, “I just feel SICK.”
When it came time to go back to Lee, off I went. My roommate drove us back from Florida, and I slept the entire time. She was just as shocked as I was. And yet…I didn’t feel any better.
Within about a week of returning, I was so sick that I couldn’t even attend my classes. (Which was a HUGE deal for me – I loved school, and I enjoyed doing well. To be one week into a semester and have not even met some of my professors yet was NOT cutting it.) I was completely frustrated, and yet all I could do was lay in bed, saving my strength for when I needed to get up and run to the bathroom. To be perfectly honest, the majority of the time, I was crawling to the bathroom.
My roommate was sure I was dying. I cannot tell you the number of times I woke up in the night to see her hovering over me. “Just checking to make sure you’re still breathing,” she would tell me.
My friends knew something was seriously wrong. Our dorm room window was right on one of the main walkways, so most times our friends would stop at our window and knock (if we didn’t have it already open) and catch up throughout the day. One particular day, a friend stopped by, and as he leaned in the window to check on me, his eyes got wide and his mouth dropped open. “Good God,” he breathed, “You look horrible. I mean, I’ve never seen you look so awful!”
Looking back, these memories are kind of funny…but I assure you, they were NOT funny at the time. I felt horrible, and I was scared out of my mind.
About 2 weeks in, with a friend on either side of me to steady me, I went to the clinic on campus. The clinic folks had no idea what to do with me. All they could say was that I probably had a bad stomach bug, and that I should eat crackers and drink Gatorade until I felt better. My friends took me back to the room, put me to bed and left…then returned with every flavor of Gatorade they could find, and every kind of cracker known to man.
And I just kept getting worse. In fact, over those two weeks, I dropped 40 pounds. Yep, you read right.
At this point, my symptoms were:
- Extreme stomach pain
- Tightness in chest/inability to catch my breath
- Extreme fatigue
- Hair loss
(I pretty much told everyone that I had food poisoning. That about covered it.)
I had been on the phone with my parents quite a bit during this time, and had been doing lots of consultation with our family doctor. We all came to the general consensus that I needed to go home where my parents could care for me and I could see a specialist. I was so disappointed, but so sick. I was at the end of my rope.
I will never forget the relief I felt when my dad arrived at the door of our dorm room. I burst into tears and collapsed in his arms. Within the day, he had packed up all of my things and checked us into a hotel that night. He drove me home the next day. I was devastated. This was NOT how being a college student was supposed to be.
The next 6 months were a blur. The doctors were fairly sure I had some kind of an allergy, but they weren’t sure WHAT kind. They told me if they didn’t figure it out, I would die. Doctors and tests and hospitals and surgeries…for six solid months. To be 18 and dealing with all of that was not ideal, as far as I was concerned. I would start to feel better, and then suddenly I would become worse than before. It was horribly disheartening. And it was then that I battled serious depression.
My dad had this knife collection on the bookshelf in the living room. They were all different kinds, with the fancy ivory handles and the engravings, and the sharp, sharp blades. The pain I experienced normally came at night, for some reason. I would get up and pace through the house, trying to move around, hoping it would help to ease the awful pangs. I would stop at that bookshelf and handle knife after knife, thinking of how easy it would be to just end it. My stomach already hurt so badly, plunging a knife into it surely wouldn’t be much worse. There would be no more confusion, no more depression, and my parents would no longer be worried…I formulated all kinds of plans. But I was never able to make it happen.
When they finally gave me the diagnosis of Celiac’s Disease, no one knew what that was! It wasn’t a common thing like it is now, and “gluten-free” wasn’t a fad-diet that anyone with a brain could follow! We literally had to start from scratch.
Thank God for my mom, who did SO much research and experimented with SO many recipes for me. I have no idea how she pulled out of her hat everything that she did, but grateful doesn’t even begin to describe it. She was absolutely amazing!
And I started to feel better. I wasn’t thrilled at adjusting my diet, but hey – it was working! I started being able to keep food inside me after months of it washing right through my intestines. I started gaining strength. I could take showers again instead of having to lay in the tub for lack of strength. My hair started to grow thick again. And the pain. The pain eased to a level that I could actually bear.
After the better part of a year…life was started to get back to normal. Well, a new kind of normal. And I was okay with that! Currently, it has been 10 months since I have had a “bout” with my Celiac’s, and for that, I am SO grateful!
Looking back now, I remember all of that as being a horrible blur on the timeline of my life. I don’t wish it upon anyone – and I am VERY glad that it’s behind me. But I’ve chosen to use the experience as a way to help others.
Do you remember me mentioning at the beginning of this post that since Celiac Disease is an autoimmune disorder, persons with the disease are very susceptible to developing additional autoimmune disorders? Well, last year, I was diagnosed with Hypothyroidism, which is indeed another autoimmune disorder, so things are progressing along as cautiously expected. I’m thankful that this condition was caught very early, and has a very simple treatment: one pill with a glass of water every morning. It could have been so much worse.
I don’t know how many people will be helped from reading my story, or checking through the resources here on the blog, or asking me questions, or just talking and letting me listen. I hope many. But even if I can only help a handful of people…it will all have been worth it!
Due to the amount of comments from all of my wonderful readers, it is not always possible for me to respond to each one. However, I absolutely do read them all, and if you’d like to address something specific, or have a question for me, please don’t hesitate to email me at Kristen@theroadtodomestication.com. I will respond to your email as soon as possible! Thank you for visiting the blog!