Friday, May 9, 2014

Celiac Suitcase

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!

Follow Celiac Suitcase on Twitter!

And for #BackThatAzzUp Friday, Joanna's choice!
Summer of 69 by Bryan Adams on Grooveshark

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  1. So scary. I know 3-4 women in their mid-late 20s that have had their gallbladders removed very recently. I wonder if the doctor was just looking for a quick fix instead of doing an elimination diet.

    Is celiacs something you are born with or can it develop later in life?


  2. Hi Jackie, Joanna here :) Technically, you are born with celiac disease, or rather, the predisposition to develop it later in life. It is totally possible that these ladies could have either celiac disease, or a non-celiac gluten sensitivity. It would be imporant for them to know specifically why their gallbladders were removed (gall stones vs. biliary dyskenesia), as I don't believe gall stones are as closely linked to celiac. If they continue to experience intestinal discomfort and issues, I would suggest they talk to their doctors about the possibility. If they think they could have celiac, it's important they explore the testing options with their doctor BEFORE they cut gluten from their diet. Unfortunately both the blood test and biopsies will only give a conclusive result if the person has been eating gluten on a regular basis. Hope this helps!!

  3. What an empowering story. It's great to hear of someone really taking control of their condition and making the best of their life.

    1. Thank you Katie! Glad you enjoyed the post :-)

  4. I am really glad I found your blog. Your story sounds almost exactly like mine. I have been in the hospital numerous times over the last few years with gallbladder problems. The doctors couldn't tell me what was wrong only that my gallbladder was contracting. And that if my symptoms got worse I would have to get it out. But, after doing research I decided that was going to be a last resort. I haven't been diagnosed with celiac but I'm pretty sure I do have it. I try to stay away from gluten as much as possible. I do get bloated and feel lethargic after I eat gluten foods. I probably should give it up completely but sometimes it is hard to do so. My gallbladder has been doing better as of late since I found out some of the things that trigger the gallbladder to not digest fat. And am taking supplements for my gallbladder. I did a lot of research after it seemed the doctors couldn't do much for me. I hope you continue to stay well on your journey.

    1. I'm so glad you were able to explore other options before your gallbladder had to be removed!! I often wonder how things would have worked out if they'd figured out the celiac disease first. You'll actually find that most celiacs are very welcoming of stories like yours, and that many of us never get that official diagnosis confirming what we already know. Best of luck as you continue your journey as well!

  5. Hey kali! I just wanted to say a big thank you to you and your sister from another mr. for this post! My mum, two of my sisters, my aunty and two best friends suffer from gluten intolerance and I think it is so important for people to be clued up on this condition! I have lactose intolerance and mild gluten intolerance and I know how frustrating and emotionally crippling it can be. I have suffered for YEARS with the worst stomach issues, embarrassing dashes to the loo when out for a nice meal.. it really knocks your confidence. So thank you for spreading the word and for being so honest with it. Wishing you the best luck J! And great blog Kali :) cat xxx

    1. Thanks Cat! Glad you enjoyed the post :-)


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