My Celiac Running Crew

Learning to live with celiac disease can be both challenging and frustrating, especially if you don’t have a great support group.  I totally lucked out, and hit the support group jackpot!  My sister introduced me to two of her friends that both have celiac disease, Liz and Amanda.  Though I had only met them a few times, I reconnected with Liz (her blog here) at the Leukemia & Lymphoma Society’s Light the Night walk.  I hadn’t been running seriously in years, but really wanted to get back into now that I felt my celiac disease was under control.  To refocus my running, Liz talked me into training with Team in Training (TNT), which supports the Leukemia & Lymphoma Society.  Although we didn’t always make it to the team runs, we put together a great group of girls that get together on the weekends for training and fun runs!  The best part is, four of us are living with celiac disease!  These runs have become something I truly look forward to on a weekly basis.  We gripe about the latest frustration or glutening (glutening explained here), talk about local restaurants that can safely prepare gluten free foods, and gush about new recipes we’ve found.  There is nothing better than a fifteen mile training run spent catching up with other celiacs that “get it,” and yes, I said fifteen miles (Liz’s blog about our run)!!

Thanks to the support of these girls, I am happy to say I finished my fourth half marathon last weekend.  I ran the Nike Women’s Half in DC with my TNT team, Out for Blood (check out my race recap here).  This was the first race I’d run in over two years, and truly shows how far I’ve come since my diagnosis.  I had such a blast that I’m joining TNT again for the Marine Corps Marathon this coming fall, which will be my first ever full marathon, and has been a goal of mine for a long time now!

So what’s the tie to celiac disease with this post? I’m glad you asked… celiac disease patients with ongoing intestinal damage have a higher risk for lymphoma than those with healed intestines.  Lymphoma is a type of blood cancer that begins in the lymph system, and can eventually spread to other parts of the body.  The following is an excerpt from a study published in the Annals of Internal Medicine.

“This study included more than 7,600 people with celiac disease who had follow-up intestinal biopsies six months to five years after their diagnosis, and were then followed for roughly nine years.

At the time of their follow-up biopsy, 57 percent of the patients had healed intestines while 43 percent had ongoing intestinal damage, according to the study, which was published in the Aug. 6 issue of the journal Annals of Internal Medicine.

Overall, the patients with celiac disease had an annual lymphoma risk of about 68 of 100,000 people, which is nearly three times higher than the general population’s risk rate of about 24 of 100,000.

Meanwhile, the annual risk for patients with ongoing intestinal damage was about 102 of 100,000 people, compared with 31.5 of 100,000 for those with healed intestines.”

That’s definitely a startling piece of information, and just one of the many risks that come along with having celiac disease.  In its 25 years, TNT has trained more than 570,000 participants for endurance sports, and investing more than $875 million in blood cancer research.  Help me declare that cancer ends with me!  Support my next run with TNT for the Marine Corps Marathon by donating to my fundraising page, linked in the TNT graphic below.

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Dropping the Allergy

I’ve had celiac disease for nearly three years now.  It’s been a long and sometimes very challenging road, but I am healthy and feeling great!  Over the years, I’ve gone through my fair share of hiccups…some making me swear off half the restaurants and fast food joints I know.  But I’m learning to live with the disease, and learning to live my life despite the restrictions it places in my path.  Recently I was out to dinner with a group and the most liberating words came out of my mouth…”I have celiac disease.”  I went on to explain the full story, I can’t eat gluten, I’m very sensitive to cross-contamination, please be sure to check with the chef.  For the past three years, I’ve had a habit of telling restaurants that I have a gluten allergy.  You and I both know that’s not the case, but allergies are taken seriously, and my health is not something worth risking.

Telling places and people that I have an allergy has started to bother me though, I’m doing myself and everyone a disservice by not telling them the truth.  My friends and family may know that I have celiac disease, but there are so many people that still don’t know what that is.  The month of May is celiac disease awareness month, so I’m making it my mission to never again tell that little white lie about my condition.  I have celiac disease.  I’ve been living with it for three years.  Ask me about it and I’d be happy to share my story with you!  If we can’t talk about it honestly ourselves, how can we expect others to understand?  Join me in promising to tell restaurants, servers and chefs from this point forward, “I have celiac disease!”

Stadiums

I love watching games as much, if not more, than the next person.  But nothing truly beats going to a game in person!  While visiting a good friend in Boston this past weekend, we had the incredible experience of visiting TD Garden to catch a Celtics game.  It struck me that a blog post on surviving a trip to stadiums and arenas would be the perfect topic for this week!  Part of the game experience is getting to indulge in foods you don’t normally get to eat.  Thankfully, many stadiums are making the effort now to offer some sort of gluten free options.

TD Garden

Celtics Game at TD Garden

Celtics Game at TD Garden

Enjoying the view from our seats!

Enjoying the view from our seats!

After searching around online, we figured out that there was at least one option for me.  Unfortunately, the TD Garden website wasn’t that much help, and I tracked down most information from comments and blogs online.  Relieved that I wouldn’t have to bring something with me, we tracked down Guest Services as soon as we were inside.  They were very helpful, and directed me to two separate concessions that could offer gluten free menu options.  I can’t speak to the second stand, but the stand closest to our seats had caesar salad or turkey wraps.  After grilling the staff behind the stand about where the wraps are made, whether or not the wraps were gluten free, and any question I could think of, I got myself a turkey wrap.  It was pretty expensive, but I guess that’s to be expected from any food at a special event.

Nationals Park

Game time at Nationals Park

Game time at Nationals Park

Although we haven’t been since early fall, Nationals Park is my favorite stadium to visit.  Not only do they have a completely gluten free concession stand, but they also offer gluten free soft pretzel sticks!!  I can not put into words how much I look forward to those pretzels each baseball season.  It’s always been a weakness of mine, and to find them gluten free was absolutely amazing!  The concession stand carries all the standard baseball favorites (hot dogs, chilli cheese dogs, nachos, and popcorn), plus they’ve even got Red Bridge Beer so you can enjoy your beer with everyone else 🙂

Lesson #1: Do the research before you go, make sure you’ll be okay if you don’t bring your own snacks to a game.  If the website doesn’t have gluten free options listed, call customer service.  If you still can’t figure out whether there are safe options, be prepared to bring your own food!

Lesson #2: Every stadium has some sort of guest services office, stop in to ask for help if you can’t find your way to a safe concession stand.  That’s what they’re there for!

Glutened

As I sat there writing my previous post, I was recovering from my latest glutening.  For anyone that hasn’t heard the term before, “glutening” or being “glutened” refers to any time I’ve accidentally eaten or had my food cross-contaminated with gluten.  I had gone almost a full month without any accidents, yet here I am laying in pain on the couch.  For those of you that are new to the disease, it happens to all of us!  It doesn’t matter how careful you are, or how long you’ve been doing this.  Sometimes things just work out for the worst.

How did I get glutened?  Believe it or not, by eating a gluten free lärabar!  Yesterday marked my first day training for a half marathon with Team in Training, and I’d made myself a delicious veggie omelet when I got home.  My lunch was a helping of leftover sauteed vegetables, and I’d packed two lärabars in my purse just in case.  My husband and I were out visiting the DC Auto Show when I started to get hungry.  Knowing I couldn’t last until dinner, I pulled out one of the lärabars to hold me over.  The last time we’d gone grocery shopping, I picked up the chocolate chip cookie dough flavor (labeled gluten free) because they just looked too good to resist.  I can’t remember the last time I was able to actually enjoy cookie dough!  I had never tried that flavor before, but eagerly opened it as we waited in line to ride a Jeep through an off road course.

About thirty minutes later as we wandered through the luxury car exhibits, some of my initial reactions started to show up.  We each have our own unique reactions which we’ve come to know and hate.  Immediately I knew I’d been glutened, and having not eaten anything else within four hours of the lärabar, it was the only explanation.  After a rough car ride home, I made myself comfortable on our couch for the long haul.  Problem is, I typically lose my appetite when I’m glutened, and I hadn’t had dinner yet.  Gluten makes me feel so awful that it takes a while to get my appetite back.  Knowing I won’t recover any faster if I starve myself, I usually try to find something that’s very bland and settles my stomach.

I’ve since sent an email to the company to find out what’s changed, or how they source their ingredients that could have caused my reaction.  So  far they’ve been responsive and are looking into the production of the bar.  I’ll certainly let you all know what I find out.  I’d like to open this up for comments and thoughts since I’m starting to get some regular readers.  What is the one food you crave or the only thing you can stomach when you’ve been glutened?

For me, it’s plain white rice. Nothing special, but to me it has the same stomach settling effect as plain toast when you were sick as a kid (pre-celiac of course!).

Local Flavor – Lincoln Restaurant Review

Here goes nothing!  I’m new to blogging, so we’ll keep this first entry simple.  This past week was restaurant week in Washington, DC and I love trying new places at a great price.  For those of you that have never heard of restaurant week, it’s essentially one week that local restaurants offer a three to four course dinner for $35.14 (or $20.14 for lunch).  My husband and I decide to venture somewhere new after a good friend told me about Lincoln’s gluten free menu.  This restaurant did not disappoint!  The service was incredible, the ambiance was so unique and patriotic in a glamorous way, and the food was absolutely delicious!

First of all, they had a specialized gluten free menu which was almost completely separate from their regular dishes to help the kitchen staff differentiate between gluten-sensitive guests.  Our waiter seemed very knowledgeable about cross-contamination, and assured us that the staff would be incredibly careful in making my dishes.  Overall I give them an 8 out of 10, definitely a restaurant I’ll return to!  Without further ado, here’s what I ordered.

Yellowfin Tuna - Poke Style Tuna, Coffee Bean Vinaigrette, Grapefruit Ponzu Jam, Honey Compressed Jalapeños, Candied Grapefruit, Smoked Crème Fraiche

Yellowfin Tuna – Poke Style Tuna, Coffee Bean Vinaigrette, Grapefruit Ponzu Jam, Honey Compressed Jalapeños, Candied Grapefruit, Smoked Crème Fraiche

Beet Salad - Grilled Baby Beets, Whipped Goat Cheese, Sunflower Sprouts, Candied Walnuts, Creamy Horseradish Dressing, Olive Soil

Beet Salad – Grilled Baby Beets, Whipped Goat Cheese, Sunflower Sprouts, Candied Walnuts, Creamy Horseradish Dressing, Olive Soil

NY Strip Steak - Black Garlic Gelée, Duck Fat Potatoes, Smoked Sea Salt

NY Strip Steak – Black Garlic Gelée, Duck Fat Potatoes, Smoked Sea Salt

Burnt Banana Sundae - Fudge, Stracciatella Ice Cream, Toffee Popcorn

Burnt Banana Sundae – Fudge, Stracciatella Ice Cream, Toffee Popcorn