Hey guys! I'm so excited for this post today because it's brought to you by one of my favorite ladies! Allow me to explain..
This goober here, is Danny, aka Dan the Man...
Danny is my cousin and we've always been really close. He grew up in New York, I grew up in Kentucky, but we've always had a special relationship. We just get each other. (Or rather, put up with each other.) He's a short, spunky Yankee who talks funny and I'm his younger, TALLER cousin who likes to give him crap. :)
Now Danny lives in DC and recently got married to Joanna! And boy, can he pick 'em! Because Joanna is awesome-sauce. It's possible we were sisters separated at birth. I hate that they still live so far away but I think they are going to visit us here sometime soon!!
Like I said, Joanna is awesome. How can I tell she's awesome? Among a bazillion other reasons...she has Celiac Disease and handles it like a pro! Last time we were all together, I bombarded her with questions because I was so curious! (Or I'm just nosey...) The point is.. this girl is a rock star because if I had to jump through all the hoops she does just to go out for dinner.. I would be a Miserable Martha. But J is great.. and here she is to tell you about her story... and her new blog!
First of all, thank you Kali for letting me share my story, and happy Celiac Awareness Month to everyone out there!! To be completely honest, I’m not exactly sure where my celiac story begins. If I had to guess, it’s sometime in the summer of 2007. They say on average it can take anywhere from 5 to 10 years to officially be diagnosed with celiac disease, and I was certainly no exception to that statistic. Shortly after graduating college, starting my first career, and moving out on my own I started experience extreme pain whenever I tried to eat. We’re talking a single bite of a saltine cracker had me doubled over in pain and running for the closest trash can or toilette. It took nearly a week and a half to finally get a test that could give me answers, I had biliary dyskinesia. That means my gallbladder had essentially stopped functioning; whenever I ate something, triggering my gallbladder to try to move bile to my digestive system, it couldn’t do it. They say they’ll remove a gallbladder if it’s functioning below 35-40%, and mine was below 17% functioning.
After the surgery I thought things would get back to normal. My doctors told me gallbladder removal had great success, and that I could eventually get back to eating whatever I wanted. I quickly found out they weren’t totally right. At the time, I had only ever heard of gallbladder failure and removal in elderly people, who probably didn’t have the rest of their lives ahead of them to find out long term side effects. Over the next four years, I learned to avoid fatty foods, large meals, and generally any time I felt uncomfortable after eating I automatically chalked it up to not having a gallbladder. A little bit about my diet at the time, I’ve always been very healthy. I ate a healthy breakfast every morning, brought salads to work at lunch, ate skinless chicken breasts most nights, and generally was active as well.
In 2011, I reached a complete breaking point. I’d been travelling frequently for work, which forced me to eat things I typically wouldn’t. Sandwiches for lunch, fast food stops, and eating out every single day for weeks on end. I started getting lethargic, I’d come home from work and immediately pass out for hours. After a meal I’d feel bloated, and at my worst, I was vomiting regularly after meals. Truth be told, I probably would’ve lived like this for a while had it not been for my husband. He’d watched this happen both in person, and over Skype while I was travelling. He forced me to go to my doctor, telling me it wasn’t normal, even though I’d been telling myself that for a while.
Since my symptoms read exactly the way I’d been feeling prior to my gallbladder surgery, the diagnosis for me took much less time the second go-around. My doctor immediately started exploring the possibility of celiac disease with me. Being told you have celiac disease doesn't sound very scary, neither does being told that you can’t eat gluten…the hard part comes when you sit down with your doctor and ask what gluten is. I was quickly informed that gluten includes wheat, barley, rye, and any derivative product of those grains. No pizza, pasta, beer, bread, fried foods, you name it, and I couldn't eat it.
The following weeks were difficult, my blood test came back inconclusive but I’d been having success on a gluten free diet. I had an endoscopy where they took a biopsy of my intestines, looking for the damage that would be a telltale sign of celiac disease. The problem was that I’d been eating gluten free, and needed to reintroduce gluten in order to get a diagnosis. Prior to the endoscopy, I went home and immediately planned a night of pizza and beer, two things I’d missed since trying the gluten free diet. Within 20 minutes, I was on the bathroom floor throwing up 2 pieces of pizza and 1 delicious Stella beer. I hadn’t overdone it, yet my body immediately rejected the gluten. My biopsy eventually came back inconclusive, but after talking with my primary doctor and the Gastroenterologist about my reactions, they were both convinced I had my answer.
I’ve been gluten free for almost three years now, and I’ve never felt better. My biggest concerns are eating in someone else’s house and eating out. The risk of cross contamination with my food is startling, something as simple as using a knife to spread butter on a regular roll makes the entire tub of butter unsafe for me. Although chefs are starting to understand how serious celiac disease is, I still find restaurants that don’t seem to get it. My health isn’t worth that risk, if I don’t get a great feeling from a restaurant while explaining my needs, I walk out. I’ve made it my mission to start a blog all about living my life to the fullest, despite my celiac disease. There are so many people out there that use their blogs to gripe about the misinformation, and connect with other celiacs. There’s nothing wrong with that, but for an avid traveler like me, holing up in my house for the rest of my life wasn’t an option. I’ve had some major challenges and frustrations along the way, but I’ve been to four continents since my diagnosis and I have no intensions of slowing down!
I don’t want to take up any more of your time, so if you’d like to learn more, please visit my page “What is Celiac?” If you know someone with celiac disease and you want to share my tips and tools, send them my way!