Monthly Archives: January 2014

Navigating the diabetic-celiac world – – literally!

People like to automatically think of Americans as the most obnoxious, annoying tourists. If that’s the case, I can only imagine what the waiter in the random café in France [a notoriously gluten-free unfriendly place to begin with] came over to me and I proceeded to hand him my laminated gluten free dining card in French (link below!). Now I’m officially the most difficult tourist.

Nonetheless, I absolutely LOVE travel. And never has the lack of gluten free/allergen-free options kept me from exploring, nor heat too high for test strips or insulin. Below is a compiled list, to the best of my memory, of all the places I’ve been, sunbutter, crackers, and Apple Pie flavor Larabars in a backpack alongside insulin on a mini “stomp-to-activate” ice pack:

                        -North America:

                                    -Atlanta, Georgia

                                    -Montgomery/Birmingham, Alabama

                                    -Memphis, Tennessee

                                    -Little Rock, Arkansas

                                    -Dallas, Texas

                                    -Oklahoma City, Oklahoma

                                    -Dodge City, Kansas

                                    -Denver/Boulder, Colorado

                                    -Zion National Park, Utah

                                    -Grand Canyon, Arizona

                                    -Las Vegas, Nevada

                                    -Los Angeles/San Diego/San Francisco, California

                                    -Boston [including many suburbs], Massachusetts

                                    -New York City [including several suburbs], New York

                                    -Newark [including suburbs], New Jersey

                                    -Indianapolis, Indiana

                                    -Philadelphia [including suburbs], Pennsylvania

                                    -Orlando/Ft. Lauderdale [including suburbs], Florida

                                    -Providence, Rhode Island

                                    -Hanover, New Hampshire

                                    -Ann Arbor, Michigan [+many, many suburbs]

                                                                ~ Home for 8 months/year: University of Michigan!

                                    -Chicago, Illinois [+many, many suburbs]

                                                                 ~This is real home.

                        -Central America/Caribbean

                                    -Costa Rica

                                    -Jamaica

                                    -St. Thomas

                                    -St. Martin

                                    -You get the point here…countless Caribbean islands

                                                ~[Cruises will be discussed later!]

                        -Europe:

                                    -Copenhagen, Denmark [Hi Daniel!]

                                    -Frankfurt, Germany

                                    -Paris/Nice/Southern Burgundy, France

                                    -Venice/Florence/Milan, Italy

-Monaco

                                    -Prague, Czech Republic

                                    -Dubrovnik, Croatia

                        -Middle East:

                                    -Jerusalem/Tel Aviv/Haifa/Netanya [+others], Israel

There’s a feeling of accomplishment that comes only from the compilation of a list of every you’ve travelled. And for a diabetic-celiac, who even did many of these trips alone, this sense is even greater. In the coming posts, I’m going to explore specific experiences in countries that stood out to me as a diabetic- celiac, as well as hopefully going to add particular restaurant names [if my memory serves me well!] that were memorable for me, and some photos. If there is a particular country/state you’d like featured in a post, let me know! I’d be happy to elaborate.

As you can, hopefully obviously, see: my somewhat whirlwind-like health existence does not stand in my way. I hope that the following posts inspire all of you to pack your backpack of necessities and hit the road. As a mentor of mine once said, “There’s nothing quite like standing where history happened. Get on the road, and change the world!” [Billy Planer, ETGAR 36]

Take it easy, but take it.

Brianna

The Diabetic-Celiac College Existence Tornado–and how to escape it.

I don’t like going to the “Student Disabilities Office” to get a form just because I may need a juice box during exams.

I promise you, test proctor, I did not in fact hide cheat notes in my water bottle, nor did I look up answers when I needed a bathroom break.

Yes, I know it’s just down the block, but today I’m going to need a taxi there. Yes, I’ll pay whatever the fee may be that you’re requiring of me.

Oh, you have a cabinet of gluten free products in the dorm dining halls? What’s that? You can’t do any better about the obvious cross-contamination issue? You want me to call the day before and tell you when I’ll be there for a “should be” gluten free lunch?  Mmmm, enticing, but no thanks.

Diabetic-celiac life in college sucks. It just does. I hope thus far I’ve convinced you of my optimism, and the importance of taking perspective, but there’s also a time to be blunt. For me, the time to be blunt with all of you is now.

As with every other part of my existence, there are ways to alleviate the difficulties, but by no means does it mean I’m left feeling like my existence in the college-sphere is fair, or equal to everyone else, but I can only try. And I don’t think that diabetic-celiac college students will feel that way for at least another 5-10 years, when universities finally recognize the need to catch up with the rest of the world that has jumped on the strictly gluten free bandwagon, and hopefully diabetes is cured [because I’d really trade any food intolerance in the world for a diabetes cure]. None of this “it should be okay” B.S. when I ask if my dinner is definitely 100% gluten and soy free.

Since my first day on campus, I’ve lived in an apartment. At first glance, this seems like a dream come true—a centrally located, new building. My own room, a clean shower. A kitchen, a gym in the building. No rules. As a freshman, at that. While, yes absolutely this is all true, and I have so much gratitude for my parents who worked so hard to make my difficult situation as easy as possible by putting me in a building right by my classes and the bus stop, getting me a Zipcar subscription to make groceries easier than taking the Ann Arbor Transit busses, and finding me a place [and furnishing it!] that I could feel at home in, as a freshman my world was, in yet another way, very different from my peers.

Apartment life is time consuming—part of the reason why I always want to share quick recipes. Saturdays I normally spend about 2 hours cleaning my apartment, and it’s just a small studio space. Every two weeks I have to schedule my Zipcar and brave whatever weather conditions hit me, and the added difficulties of my building now preventing me from unloading behind the building with my flashers on, to be sure I have enough to eat. And obviously, a diabetic-celiac college kid isn’t about to eat Easy Mac for a multitude of reasons.

Hopefully I’ve painted an accurate picture of my challenges. I think it’s important that I’m realistic about this topic, because I went into the whole “diabetic-celiac in college” life without any idea of what to expect. And hey, maybe there are other campuses that have more than one or two casual restaurants [that are centrally located!] for strictly gluten free food, like is the unfortunate case in Ann Arbor. Sure, I can always go for a great meal in the downtown area—about ¾ of a mile from my place—but as a college kid, I’m not about to go spend, spend, spend on a simple dinner with friends, and neither are they for that matter!

So here’s the deal. It’s tough. I never realized how much the rides to the doctor’s office or school from my mom alleviated my stress until I’d taken on making/driving to the doctors appointments, walking to pick up prescriptions from the CVS on the other end of Central Campus, trudging to class through the snow and ice of the arctic winter [or maybe a cab day here and there for those messy, dizzy blood sugar days], driving to the grocery store, unloading groceries and praying your raspberries didn’t get squished and that your ice cream didn’t melt, making time to study, doing research to bulk up that resume and determine what you’re going to do with your life…and WHOOSH. You’ve been sucked right into the diabetic-celiac college existence. At least as it is for me. Here. At the University of Michigan. As a sophomore biomedical engineering, pre-medicine major. Who chose to do research in the Neuromuscular Lab on technologies for bionic limbs in the future. And be vice president of the Jewish Engineering Association. And coordinate a Peer Mentor Program in the College of Engineering. And join the Ballroom Dance Team. And manage to have some crazy definition of a social life, with friends flying in and out of my apartment, grabbing a Hershey’s Kiss or Jolly Rancher from the glass bowl I blew in the hot shop over break on my living room table.

There will be a moment, hell there will be many moments, where you’ll probably feel like you’re destined to drown. It’s happened to me many a time. But, never, ever forget that you’re doing things for you. The extra five dollars for the cab means that you’ve chosen to prioritize your class over your intolerable diabetic mess. The late nights cramming a last minute allocations form for bagels you won’t even be able to eat at the next Jewish Engineering Association event means that you’ve chosen to take yourself outside of your diabetic-celiac bubble and involve yourself in things that are greater than the micro-existence. And that, right there, is how to survive as a diabetic-celiac in college.

Take it easy, but take it.

Brianna

First visit to Michigan!

First visit to Michigan!

First football Saturday!

First football Saturday!

All geared up for football!

All geared up for football!

It's true, nearly everyone wears Michigan stuff at least once a week. More often, it's daily.

It’s true, nearly everyone wears Michigan stuff at least once a week. More often, it’s daily.

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One of my “braving the weather” pictures I’ve sent home…

Waiting to watch the basketball championship game--sophomore year.

Waiting to watch the basketball championship game–sophomore year.

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First Michigan hockey game! Thanks for taking me, Nate!

{So, for someone who barely attends UM sports games…I realize I have quite the impressive photo lineup. I officially determined I can pretend to be that cool UM sports fan to my children someday.}

Wait, but you’re not fat!

No, I’m not fat. And you won’t find “track marks” either. But I do go to the gym 3-4 times a week, poke the tips of my sore fingers about 6 times a day, and put a needle under my skin 6-8 times a day. That’s a whopping total of around 160 gym visits, 2190 finger pricks, and 2555 injections in a single year. Now, while I manage to get quite a kick out of the sheer amazement new friends have when they hear I’m a diabetic, scan me up and down, and cannot figure out how someone who’s thin could possibly have diabetes, the heroine jokes have gotten old for me.
While I could sit here and re-hash every heroin joke I’ve heard, I think it is more important to narrow in on my feelings about people’s perceptions of others struggles—pretty much the theme of my blog. 20-some year old students hear even a snippet of my difficulties of my daily experience and the automatic response is either lightheartedness and jokes or a pity party lasting the rest of our friendship. I want neither. I didn’t particularly even ask for a response. It’s the awkward moment when someone tries to say, “Oh, I’m so sorry” to your diabetic-celiac existence and you look at him or her and wonder, “Sorry for what?”

Sometimes I wonder to what extent it would be distasteful for me to dress up as a heroin junkie for Halloween. Sure, everyone’s going to laugh, but am I being too light-hearted about the true severity of what I deal with day to day? I tend to lean towards it being funny enough that my group of friends could laugh at it, but hypocritically am sick of people making the joke to me. Diabetics, and diabetic-celiacs and any other variety of the clan, are a freestanding population. Meaning, we definitely fall into the category of being able to call each other something, behave a particular way, or use particular words with each other that others couldn’t do or use with us. A few examples:

            -If you’re not a diabetic, please don’t look over my shoulder at my meter. That’s obnoxious; it’s none of your business and I know it’ll end in endless questions that I probably won’t want to deal with if I’m high or low.

            -“Yo, can I get a hit?” Again, heroin jokes to diabetics are like twerking jokes to girls with bodacious booties–yes, it technically has correlation, but it’s old. Find a new hobby.

            -No, I won’t suddenly “grow up and lose my toes” like your grandfather did; it’s called modern medicine and the strength and determination to take care of yourself.

In very recent news, about three months ago I went on the newest Dexcom [continuous glucose monitor, for those newbies] and it was the biggest stress-reliever I’d ever found. Unfortunately, being the sensitive health person I am, two weeks later I developed a severe allergic reaction to the tape—hives and everything. However, after multiple allergist visits [and honestly some unnecessary testing] I have found a type of medical tape that I am not allergic to [3M Medipore H Tape, for those who have tape issues] After discussing the situation with Dexcom, a great customer service company by the way, I will cut a hole in the tape for the sensor needle to go through, and put a layer of it under the Dexcom receiver/sensor. They are sending my CGM back to me within the next few weeks and hopefully I’ll get that stress relief back, because goodness knows, a diabetic celiac college girl could use some. Please, if you have any experience with Dexcom or CGM or tape issues, share! I know everyone, including myself could benefit from your ideas.

Below, I’ve included the link to one of my lifesaver companies, GoPicnic, which sells packaged snacks/meals to go. I’ve fallen in love with the Sunbutter Cracker meals and have over 40 of them under my desk [bulk discounts!] for my long college days. [Note: They recently changed their cookie to a cookie that contains soy for this meal. I contacted them and they said they still have the old ones in stock, with the Enjoy Life cookie, and provided me a discount to buy more. Another company with fantastic customer support!]

Take it easy, but take it.

Brianna

Also, in case you’re interested:

A Silly Yak, and other animals people think I am.

Apparently, I am a silly yak. Oh wait, and I have diabeetus? Is that some kind of bug? I’m sorry, but it’s actually beyond my comprehension how people just cannot seem to get it straight. It’s like, no I don’t have celiacs- there aren’t multiple? You know you’re S.O.L. if a doctor comes into your appointment and starts reading the grocery list, as I so lovingly referred to it in a previous post, looks you in the face and asks, “How well is your celiacs managed? You been feeling alright?” Nah, I actually casually prefer the momentary satisfaction of an Oreo over the upright-edness of my villi of my small intestine. Yup, loving me some intestinal wall holes.

I want to give a little insight into my food allergen riddled life. I was diagnosed with celiac disease at age 5, one year after I was diagnosed with type 1 diabetes. And if it isn’t clear already, my intestines are actually guarded like an army guards international borders—not a single gluten molecule gets through there without being, quite literally, attacked. As time wore on, I determined that I am the proud owner of the weakest digestive tract on the planet—developing intolerances to straight milk [like cereal pouring/coffee altering—to which I am opposed anyhow. Coffee is meant to be bold and black.] by around age 10, peanuts around age 16, soy and shellfish at age 18, and the random smattering of “Oh, those make my tummy hurt, but no actually my intestines are spasming, where is the Nulev *frantically riffles through medicine box under counter and audibly sighs relief upon finding the stomach relaxant*?” foods including carrots, popcorn, and anything gummy.

What’s that? You “could never do that?” Funny, I think I’ve heard that one somewhere.

Below, there’s a photo of me and my sister, who is literally my rock, at the University of Chicago Celiac Disease Benefit last year, enjoying a ballroom filled with celiac and non-celiac individuals and 30+ gluten free restaurants from around the Chicagoland area. Mind you, my family has been attending these events since 15 years ago when we had one long table at Wildfire Restaurant and the most exciting research news was that someone was researching celiac disease at all.  Over the last few years, I’ve even been able to make my dent on the research, working with Dr. Bana Jabri in her lab [multiple important links below] and helping the University of Chicago obtain their first celiac disease mouse model.

Through the ups and downs of a diabetic-celiac existence, there has been no one as important or special to me as my sister. A junior in high school herself, she still finds the time in her busy schedule to find me, in my busy schedule, to be sure I’m alright. She’s been retrieving juice for lows since she was old enough to do the stairs, and sharing every crumbly piece of nasty gluten free bread ever discovered until we finally found one that was edible. As I mentioned in a previous post, there’s something unique in finding someone who shares your problems, but I am blessed to have someone who has none of them but nonetheless brings me the same comfort, happiness, acceptance, and strength. This blog post is in honor of my sister, the person who has, in her own way, made me the person I am today. Below is also a link to a great recipe for gluten free fruit tarts—her favorite.

As Woodie Guthrie says, “Take it easy, but take it.”

-Brianna

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Brianna and Ellory at Spring Flours 2013– University of Chicago’s Annual Celiac Disease Benefit

University of Chicago Celiac Disease Center:

University of Chicago CDC Website

Fruit Tart from Gluten- Free Baking with The Culinary Institute of America, 2008

Yield: Six 4 1/2″ tarts

One half recipe (7 oz.)        1-2-3 Cookie Dough*

1 1/4 cups (11.7 oz.)          Pastry Cream**

16 oz. (1lb.) (as needed)     Fresh Fruit, sliced

1/4 cup (2 oz.)                     Water

1/4 cup (2 oz.).                    Sugar

1/4 cup                                Apricot jam

1/4 cup (1.25 oz.)                Almonds, sliced, toasted

Preheat oven to 350* Roll out dough to 1/8 ” thick, place in greased tart pan, and dock. Bake for about 15-20 minutes or until golden brown. Let cool. Fill shell with pastry cream. Top with sliced fruit. Heat water, sugar, and jam together in a saucepan on the stove over medium heat until sugar is dissolved and jam is liquid. Bring to a boil, then simmer before brushing over fruit. Top edges with crushed toasted almonds.

*1-2-3 Cookie Dough (**I use GF All Purpose Flour instead!**)

Cut 1/2 cup (4 oz.) old butter into cubes. In a bowl combine, 1/4 cup (2 oz.) sugar, 1 1/4 cups Flour Blend #2 (1 3/4 cups white rice flour, 1 1/4 cups brown rice flour, 3/4 cup potato starch, 1cup tapioca starch. Total 4 3/4 cups), 1 egg room temperature. Mix with butter by hand or with paddle until thoroughly combined. Wrap dough in plastic or waxed paper. Refrigerate for at least one hour. Can be held in fridge for two weeks or frozen up to two months.

**Pastry Cream

Whisk together 3 egg yolks, 1/2 cup milk, 1/4 cup sugar, and 5 tablespoons cornstarch in a medium bowl. Set aside. Combine 1 1/2  cups milk and 1/4 cup sugar in saucepan and bring to boil over moderate heat. Add 1/4 of heated milk mixture to the egg mixture, adding it in four parts and whisking constantly to combine. Add the egg-milk mixture to the remaining simmering milk mixture in the saucepan on the stove all at once; continue whisking until it comes to a boil and begins to thicken. Remove the pan from heat. Stir in 3 tablespoons butter and 1/2 teaspoon vanilla extract. Pour the pastry cream into a wide shallow pan and cover surface with plastic wrap, pressing it to the surface of the cream to prevent the formation of a skin. Allow pastry cream to cool completely in the refrigerator before using as a filling for pastries. Stir or whisk cooled cream before using.