Tuesday, December 11, 2012

Why the University of Chicago is Made of Win, Part II


I must've written and deleted about a dozen versions of this post. For one thing, all medical stuff just sounds jargon-y and boring, and if you wanted legitimate scientific information, you probably wouldn't go looking for it from a blogger who is seriously considering getting this as a tattoo:
"Hi, I'm Stabby the Cupcake. Watch as I destroy your intestines with a smile. No sprinkles, no mercy."
 Another reason? While my visit to University of Chicago was informative and hopeful and awesome and all that, in a lot of ways, it's "To Be Continued ..."

Let me explain. Back in the early fall, I went from feeling pretty fantastic to feeling like a big ol' pile of yuck. So I did what any normal human being would do: visited my good friend Web, M.D. (he's not a doctor, but he plays one on the Internet). And because everything on the Interwebs is true, I immediately determined I had several new, incurable diseases. So I panicked. And by "panicked" I mean I followed the same routine every day: Drag self out of bed, go to work, drag self home, sleep for 11 hours, do it all again. And I never dreamed of doing something so base as consulting an actual physician. After all, I was eating gluten-free, taking ridiculous precautions at home and when we ventured out, and I swapped all my personal grooming products. So I figured, maybe this is as good as it gets.

My darling husband thought otherwise, and he, um, ever so gently encouraged me to schedule an appointment with the University of Chicago Celiac Disease Center. His reasoning was pretty sound - when you have the best hospital in the world for celiac research essentially in your back yard, it's just plain stupid to ignore that. Plus, I've had a special sort of love for University of Chicago since they sent me a delightful basket of goodies shortly after my diagnosis. As I can easily be convinced into just about anything with Chex and Ian's cookie buttons, I called the center to schedule an appointment ... and got an amazing opportunity.

 The fine folks at University of Chicago asked me to be a part of the preceptorship program the center does. As a librarian and former journalist, research is important to me. Plus, I will talk to whomever will listen (and most people who won't) about celiac disease. This was essentially an invitation to see some of the best CD professionals in the world while at the same time waxing poetic about the importance of advocacy and change. Heck yes, I'm there.

 Luke and I, being the consummate suburbanites that we are, both took the day off work to spend in the city. We figured we'd be in and out of the hospital, and planned on doing some shopping before grabbing dinner. What we didn't expect was a full afternoon of talking with medical professionals (and giving a few vats of blood, but more on that later).

My first appointment was with Dr. Sonia Kupfer and her team of preceptorshippers (sounds like a '60s doo-wop group, right?). I knew right away I was going to dig Dr. Kupfer. She let me do most of the talking for the first part of the appointment, and she just took notes and listened. Not in that "uh huh, uh huh," distracted sort of half-listeny way that I'm used to - she was working through all the things I was saying. Occasionally, she and one of the other professionals would share some knowing look, which I took to mean that what I was saying wasn't unheard of. The preceptorshippers all got to ask questions. I answered as best as I could. We talked for over an hour. It was comprehensive and amazing and I am no closer to having any answers than I was before I went. Well, I suppose that isn't entirely true. Dr. Kupfer ordered some more blood work (done on site. That day. Unprepared Alissa was unprepared). I have to have a DEXA scan done, to see if I really do have the bones of Betty White. And I get to go for the dynamic duo of excitement that is an endoscopy/colonoscopy double feature. We've narrowed my new symptoms down to a couple of things, from a possible secondary autoimmune disease to something as simple to fix as a vitamin deficiency. Hopefully when the blood work comes back in the next few days, I will know more.
The highlight of my visit with Dr. Kupfer wasn't so much getting any new information as it was helping to create new information. In addition to letting the preceptorshippers study me (and yes, I am a complicated, complicated woman), I donated some blood to a research study Dr. Kupfer is leading, as well as participating in another study the center is conducting. Seeing as I think my years of schoolin' are done, this is probably going to be my greatest contribution to science (unless someone wants a lab rat for a study involving chocolate and mood elevation. I am so there.)

I ended my day with dietician Lori Rowell and her team of preceptors(?). I was fully expecting a lecture on the dangers of Pepsi and Hershey's Kisses as meal replacements, but Lori seemed to have a firm grasp on reality. I told her about the horrible experience I had with the holistic nutritionist, and how I feel morally obligated to consume as many delicious animals as I can, while also emotionally eating my way through the gluten-free cookie offerings of Whole Foods. Other than some likely vitamin deficiencies (probably more the result of years of absorbing NO nutrients, rather than my current *ahem* diet), she didn't have too much to correct for me. Being slightly OCD, too smart for my own good and a professional information-gatherer has benefitted me, and I have a really good handle on eating gluten free, what to avoid and what passes for safe. Instead of getting lectured, I really feel like Lori and I had a two-way conversation where we both came away with some new information. 

While I really don't have any concrete answers on why I could medal at the napping Olympics, or why all of a sudden my joints have aged 90 or so years, I still consider it an incredibly successful visit. I laughed, I cried, I promoted the bejeesus out of my blog. I got to advocate for this zany community of food freaks. I met medical professionals who are genuinely interested in learning more about how to diagnose celiac, and more importantly, how to treat patients with the disease by doing more than telling them to "stop eating pasta, and you should be fine." And I got to see first-hand how invested in finding a cure (!) the folks at University of Chicago Celiac Disease Center are (pretty invested - their Web site is www.cureceliacdisease.org).

If you are interested in scheduling an appointment, and you live in Chicago, I highly suggest it. Or, if you are feeling pretty generous this time of year and looking for a good cause, visit their site and make a donation. If nothing else, follow them on Facebook for some great Q & A, and a chance to network with other wacky celiac-ies.

3 comments:

  1. I'm glad to hear you're finding a place that's listening to what you're feeling!

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  2. That is just amazing how they TRULY listen, because they care. Not to mention what an amazing place to be, where you felt like you belong. :)

    It is so comforting to know you and I both have similar symptoms still after going Gluten Free. My bones missed the memo that I am still 29. My rheumatologist appt is the 1st week of January. So we shall see if I have Betty White bones too.

    XOXO Your not alone!!

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  3. I have read your blog its very attractive and impressive. I like it your blog.

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