Celiac Catalyst — Disney Bullies Gluten Free Child

18 May

What a day for Celiac Awareness!  The web is all a buzz with Gluten Dude’s latest post about a Disney television show plot line where a gluten free character is bullied, mocked and, in my opinion, assaulted.   The Disney Channel show “Jessie,” aired an episode guest starring JJ Totah who plays Stuart. Described as a”9-year-old smart wiz boy” by Wikipedia, Stuart encounters some rough moments in the episode because he is gluten free.

In the episode with the controversial scenes about gluten, Stuart is attending a sleepover at his friend’s house only to find that his dietary needs are mocked and undermined.  Here is the clip posted by Gluten Dude:

 

 

I think it should go without saying that these scenes are abhorrent; however, if things simply go without saying, then I am out of a job!  I cannot believe that Disney would target such an incredible community: the Celiac Kid community.

Anyone who has met a Celiac kid will surely have left with a strong and lasting impression.  When I led the Celiac Disease Foundation’s youth events at last year’s conference I was blown away by the maturity of these kids.  Celiac kids are articulate. They are persistent. They advocate for themselves. They read labels that took me years to master how to decipher.  They explain complicated things to grown ups on a regular basis!

Imagine being the one kid at the birthday party who can’t eat the cake. The one kid who is left out of the pizza party that his class won for selling the most magazine subscriptions. The one kid who reads labels on Halloween candy before trading with friends.  The one kid who had to ask the waitress questions about an order.  Celiac kids are constantly singled out and must learn adapt to complex social situations at a very early age.  We are talking about children who may have spent years sick, weak and tired who have finally discovered what it feels like to be strong and healthy but, the cost to their new found health is a brand new life that seems counter to what all their friends at school experience.

We know the Celiac Kid community is fantastic and it isn’t fair of Disney to target such an inspiring group; however, my criticism of Disney goes much further than simply targeting a great group of kids.

Disney is incredibly litigious. They do not care how big or how small you are, if you infringe upon their copyright they will get you.  Why? Because they care about what products, what people and what words have the Disney name. They care deeply about the quality of products that say “Disney.”  Given this fact, I take extra offense to the absurd display of ignorance and bigotry in their episode of Jessie. Someone at Disney brainstormed the concept, someone wrote the script, someone read the script, edited the script, practiced the script, recited the script, filmed the scripted being read and then edited the film and not once in this process did they stop to think that maybe there was something wrong with the idea of bullying a child with a gluten-related disorder.

A friend, playing devil’s advocate, asked me “Well, CC isn’t the allergy/nerd schtick pretty common for comedy?”

A) No. No it is not.

B) Find an episode of child’s television show post-1995 that has a plot-line where a child with a food allergy is attacked by bullies using the allergen.  I promise you, you will not find a show where some low-life bully spreads peanut butter on the peanut-allergy kid’s desk without his knowing. You know why? Because it isn’t funny. There is nothing funny about children being in pain.

The thing that gets to me the most is the part of the episode where a child throws glutinous pancakes at the gluten free character.  If someone threw anything glutinous at me on purpose, I would lose it.  Honestly, I think that should be considered assault.  Kids cannot think it is ok to play with allergens or bully kids using allergens when Celiac Disease or anaphylactic allergies are involved. If it seemed funny on the show, it will not seem funny once it happens at a real school, with real students and real health issues.  It is so incredibly irresponsible of Disney to treat food allergies and the like so flippantly.

Disney is a huge huge company. It is going to take more than Gluten Dude’s blog post and CC Gluten Freed’s post to make them truly listen.  There is a lot of buzz on Facebook and Twitter and there is an electronic petition going around to get the episode removed from the air but in order to get a reaction we need to make some more noise.

PLEASE SIGN THE PETITION by clicking on this link! If you are willing to put in the time, please contact the company directly by clicking this link. After all, it is Celiac Awareness Month and if none of the things on my list of how to best celebrate the month appealed to you, then this may be your way of contributing to the cause!

The Celiac/gluten free community is so connected and passionate. We need to act together to get a sort of Celiac catalyst effect going. May is Celiac Awareness Month and it is time we start spreading some especially given the nature of this issue. This episode is out there and our kids are watching it and forming opinions about the gluten free community and how they should relate to people who are gluten free (or have any other food-restriction, for that matter).

 

Readers, please don’t feel discouraged or blood-boilingly angry about this! We are so lucky to be a part of such a great community that advocates for itself.  We can support each other and, probably most importantly, support and protect our Celiac kids! I know a lot of gluten free moms, dads, aunts and uncles (mine included) that want awareness efforts that specifically  help the younger Celiacs live healthy and happy lives!

 

Please contact Disney about this issue! If you don’t have time to write a full comment then  just quote via copy and paste parts of this post or Gluten Dude’s post.

 

-CC

How To Make the Most of Celiac Awareness Month!

30 Apr

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This year I am taking Celiac Awareness Month a little more personally than years past! In March, I went to the Digestive Disease National Coalition and met with Senators to discuss Resolution 550 that officially makes May  National Celiac Awareness Month.

When talking with the Senate staff I explained that making May Celiac Awareness Month gives members of the gluten free community a great jumping off point for awareness campaigns and projects. For example, the Gluten Intolerance Group implements their Chef-To-Plate program every May that gets restaurants to display information about the gluten free diet at their establishments. NFCA’s Fuel the Family program will share family stories from the gluten free blogosphere, daily gluten free product spotlights and will be promoting a Wear Green Day! The Celiac Disease Foundation has their annual Gluten Free EXPO on the 4th and 5th of May in Pasadena, California.

We don’t need to leave all the work to the nonprofits though! There are plenty of small projects and actions you can take to promote Celiac awareness during the month of May.

I want to practice what I preach by using May as a jumping off point for my awareness efforts. Any increase in awareness, no matter how small, can make a big difference in the lives of people living gluten free. How many times have you been at a restaurant when the waiter happened to know all about the gluten free diet and cross-contamination because he knew someone who knew someone? Although there is no instant gratification when it comes to promoting awareness, our collective work really does make a difference!

I know we are all busy; however, below is a list of ideas that won’t take up too much of your time but can still help you promote awareness.  Items on this list should be able to fit into the busiest of schedules. For example, I am a first year teacher at a turnaround school in the DC Region, I am taking the MCAT on May 11 and I am applying to medical school in June but I will be doing the items on the list with asterisks* next to them.

1. **Facebook Banner – if you are a member of  any type of group that hosts events I am sure you have been asked to change your profile picture or banner to promote events.  When I was an undergraduate, my professional sorority used to make it a “sister-requirement” to change our profile pictures during Rush.  This is a simple yet super effective way to promote awareness and it only takes a few seconds! You can design your own banner or picture to display or go to this website for some pre-made banners promoting awareness!

On that note, remember to Like CC Gluten Freed on Facebook!

For the entire month of May, I am changing my banner to:

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2. **Buy a few Gluten Free shirts and wear them every Monday for the month of May (or any day, I just liked the alliteration) Here are some of the shirts I bought for May 2013. If you want to go the extra mile, buy some GF swag for family members too! I know it seems excessive but I really did order all of these items…there aren’t many perks to being gluten free, at least we have cute clothes!

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I also have the Gluten Freek shirt from Mariposa Bakery in Oakland, California amongst many others.

3. **Pinterest Challenge - I am going to post one picture to Pinterest every day for the month of May that will promote awareness.  This is my goal for Celiac Awareness Month.  I will keep you all posted with my updates!

4. Twitter - Commit to tweeting about gluten free experiences during the month of may. You can post about restaurants you go to, foods you make, people you meet, anything just keep the posts coming!

5. Blog - Last May Gluten Dude updated his blog every single day for the month of May.  This is way too big a time commitment for me but if you can do it then more power to you! It is great for boosting your creativity. In order to get ideas to write about you might end up doing some research and learn something new yourself!

6. Donate - Worried about the time commitment? The quickest way, though not cheapest, way to celebrate Celiac Awareness Month is to donate to your favorite GF nonprofit. National Foundation For Celiac Awareness, Gluten Intolerance Group and Celiac Disease Foundation are some of my favorites. They do great work to promote awareness across the country!

7. Make a basket for a friend – Reconnect with members of the gluten free community by sending them a basket! Maybe you met someone at the last gluten free expo you attended or maybe you exchanged business cards with a random gluten free person you met last week or maybe you attended a gluten free support group meeting a year ago and  still have some contacts. Follow up with these connections and send a little GF goodie basket!

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8. Go to an event - Check out this website that lists gluten free events going on around the country. Find one near you. You can also check out websites that list Celiac and/or gluten free support groups. Attend a meeting!  You can also go to http://www.meetup.com and find a MeetUp group in your area that connects gluten free locals.

9. Bake GF cupcakes for your coworkers – What better way to explain about the gluten free diet than by giving people delicious treats? This is a great way to get your coworkers to be more supportive of your lifestyle. If you can, make the frosting Green. Here is a great recipe for Tiramisu cupcakes.  Here is a review of a great GF all-purpose flour so you can convert fun recipes you find online.

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10. **Get friends and family involved  – The best way to really understand what it is like to live with Celiac Disease is to actually try being gluten free for a day.  Have a friend or family member order gluten free while dining out for a week even if they aren’t celiac.  When I first started to show signs that I was struggling with being gluten free, my uncle decided to try being gluten free to see what the problem was.  It then became clear to him how challenging it truly is. Cross-contamination issues, awareness issues, dining out, social problems that arise because of being gluten free are all among the list of challenges that people with Celiac Disease or gluten intolerance face. These issues are pretty invisible to the average Joe, so get your family or friends informed by teaching them how to live gluten free, even if just for a week. The only way to truly get it is to live it.

Happy Celiac Awareness Month!

-CC

The Gluten Free Professional: the gluten free diet and your career

20 Apr

Can being gluten free affect you professionally? The answer may surprise you!  The importance of networking is lost on few careers. From working your way up from server to management to making partner at a law firm, networking with colleagues and others in the biz, can play a big part in your professional success.  Where does networking happen? Where do most social encounters happen…while eating!  Food is social to the point where its purpose is probably more about connecting with others than it is about nutrition.  Come on, birthday cake has very low nutritional value yet has great cultural value. The role of food is social and, when you take that into the workplace, it becomes professional.

Let’s go through a few of the potentially problematic gluten free scenarios you may face in your professional life:

Meetings

The most common place you may find yourself in an awkward GF situation is during regular meetings or conferences at work. Of course, it depends on where you work and how meetings are run, but I am picturing a conference room with a big oval table and chairs squished really close together so all of your coworkers can fit.  Instead of a vase of flowers as a centerpiece you will see a box of donuts, a plate of danishes, or a stack of half-sandwiches from a local deli.  What should you do in these situations?

If you have been with the same job for a while most of your coworkers probably know that you are gluten free (why the lack of GF options then, I don’t know. Baby-steps, people!).   You have a few options:

Option 1: Bring a snack

This is my favorite of the three options for several reasons. It is a happy medium between not drawing too much unwanted attention with a big outside lunch while also not feeling deprived or left out.  Keep snack bars or chips in your desk drawer and bring them to the meeting.  Simple solution to what sometimes feels like a huge problem.

Option 2: Abstain

Plenty of people in your office will probably not partake in the provided refreshments.  Maybe you had a late or large breakfast. Maybe you don’t like whatever is provided. Maybe you have dinner plans later and don’t want to spoil your appetite. Maybe you are on a diet. There are plenty of reasons that people don’t eat food that has been set out before them, not just because it has gluten in it. Don’t feel pressured to partake but also don’t feel pressured to explain yourself.  You don’t have to justify not eating the food!  It is not outside the realm of normal to abstain, so don’t stress about it.

Option 3: Bring lunch

There is nothing wrong with bringing lunch from the outside world into a meeting if everyone is going to be eating anyways. This is my least favorite of the three options, though, mainly because of convenience.  You may not have time to run out of the office and get food before the meeting. Another issue is that bringing a big outside lunch draws a lot of attention to you and your food.  It will smell different, look different and be packaged differently.  I get plenty of attention from being GF and, in a setting like this, I do not want that attention.

The benefits of bringing in your own lunch are that you won’t be hungry and you get to eat with your coworkers! If you do choose this option, do so with pride (OWN IT!).  You don’t have to feel victimized because you can’t eat the deli sandwiches provided. Your lunch is probably fresher and more delicious anyways! Instead of focusing on what you cannot have, focus on the fact that your lunch is something that you chose and enjoy it.

Networking

This situation may be a little trickier than a conference room full of donuts.  If your job requires networking with clients, prospective employees, getting to know your executive team or your boss then you will likely find yourself in the position of dining out!  There are some steps you can take to reduce the GF stress you may feel building in you as you think about giving the gluten speech in front of your boss or prospective client!

Strategy 1: Control the Environment

Try suggesting a restaurant that you know is safe or a restaurant that you frequent (maybe the wait-staff knows you and your GF needs already).  I like to suggest a few diverse options in the hopes that the person in question will choose from my provided list!  If this fails, then move to Strategy 2.

Strategy 2: Benign Deception

Whenever I really don’t want to be a spectacle while ordering I engage in benign deception.  I know this may seem over-the-top but sometimes (often, actually) I just don’t feel like putting myself on display while ordering!  I will excuse myself from the table and say that I am going to wash up or use the restroom. In actuality, I am tracking down the hostess or server to discus GF options BEFORE she/he comes to take our order.  If I can’t find the server assigned to my table I ask the hostess for help.  I explain that I am gluten free and really don’t want to have to ask questions and put on a show in front of the person I am eating with. In my experience, the hostess usually gets it. Make sure you are transparent and honest though otherwise it comes off as really odd that you are going so far out of your way to put in an order!

Here are some potential questions you can ask:

  1. Can you ask the chef which items are gluten free on the menu?
  2. What modifications do I need to make to make ____________________ gluten free?
  3. Do you know which items are gluten free off the top of your head or can you grab someone who does?

Once I figure out what I can order I go back to my table.  When the server comes I can put in an order as smoothly as my non-GF lunch date!

Strategy 3: Order Simply

If you don’t want to implement Strategy 1 or 2 here is another alternative: order simply.  Once you have been gluten free for a while you start to get good at deciphering menus and figuring out what is likely to be gluten free. This is risky!! Not telling your server that you are gluten free can get you into trouble sometimes so use this strategy with care. I might order a salad and specify no croutons, bread or dressing (even if croutons aren’t listed in the description on the menu, say it anyways!). The last thing you want to do is send a dish back in front of a prospective client because you forgot to mention an important detail about what you wanted eg no croutons!

Happy Hours

Happy Hours are pretty common places for coworkers to socialize after work but can sometimes be tricky if you are gluten free.  Most bar food is horrible for the gluten free diet because the menu items are usually fried in contaminated oil (wings, French fries, calamari etc).  Avoid food at happy hour unless you have talked to the wait-staff or cook beforehand.  Since you are not eating make sure you limit your alcohol intake! You don’t want to be that coworker. Beer is super common at Happy Hours, especially because there are great deals on pitchers.  Take pride in not drinking the beer otherwise you are going to feel bummed out and excluded. You don’t have to tell people it is because you are gluten free if you don’t want to. Some people don’t like beer anyways! You can always go for a glass of wine or a mixed drink. Consult GF resources to make sure your drink of choice is gluten free. I keep things simple and order a glass of wine.  Avoid any weird mixed drinks unless the bartender is willing to tell you the ingredients. Check out Triumph Dining’s list of gluten free alcoholic beverages. 

The thing to remember about happy hour is that people are happy to be there! Work is over and I promise you that no one cares what you are eating or drinking so long as you are having a good time!

Holiday party/Retirement Party/Celebrations

A work party is no different than any other holiday event or dinner party you may have gone to in the past. Don’t overthink it! Use the same strategies you use for other parties. You can check out my posts on how to survive Easter dinner parties  for some tips.

One bit of advice: just bring something! Again, you don’t have to make everything about gluten. You can control the narrative so that you do not feel like a victim of Celiac Disease or gluten intolerance. Bring a dish to be nice/polite/for fun or to show off your cooking or baking skills.  You can bake these awesome Tiramisu cupcakes or bring this savory quinoa dish that will be sure to impress!  If you bring a dish you earn brownie points with the host and it guarantees that you have something to munch on during the party.

Traveling

Some jobs require traveling and this can make finding GF food challenging.  You will be in unfamiliar territory and may be traveling with a team from work.  Download the Find Me Gluten Free application on your smartphone before you head out to your travel destination. This app takes your GPS location and gives you a list of restaurants with GF options near you. You can easily make suggestions on where to dine to your work team. Tell them there is a Chipotle about a mile down the road and they will probably be impressed how well you know your way around the area!

If traveling alone you have more flexibility and the app should be enough to help you find food options. If you are having issues because the people you are traveling with want to go out for pizza remember you can probably order a salad but more importantly, if you are traveling with these people, you should probably just explain the gluten thing! You may be surprised how understanding they can be.  If a conflict arises you will have to just talk it out. Hopefully all parties involved will be professional about where to dine considering it is a work trip anyways and not a vacation!

If traveling, make sure you pack snacks to have on the road.  Pack protein bars or you can always buy Kind bars at Starbucks! Here is a post on traveling gluten free by air!

Being gluten free in the professional world may be an extra challenge but, let’s be honest, being gluten free makes almost all food-related situations more challenging. Why would work be the exception? It isn’t fair but we can make the best of every situation by being prepared and having a positive attitude.  Remember that you can control the narrative. A lot of people experience negative feelings like being victimized, excluded or simply anxious over situations that may arise but we can take steps to change that frame of mind.  By being proactive we can turn negative situations into positive ones like bringing cupcakes to the next work function. Yes you have to put in some extra work but you get to eat cupcakes and your coworkers will enjoy them too!

Enjoy the rest of your weekend and, come Monday, get ready to be gluten free professionally!

-CC

Gluten Free Tiramisu Cupcakes

7 Apr


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The national cupcake craze has not excluded those living gluten free.  In fact, as far as a flour-based food fad goes, the cupcake industry has been pretty inclusive.  Shows like Cupcake Wars have highlighted several gluten free bakers in the past few years. How many of you have grabbed a cupcake from Crave Bakeshop in Lake Oswego, Oregon?  If you have, then you have probably met Ms. Kyra Bussanich, the proud winner of Cupcake Wars and promoter of gluten free awareness!  For my neighbors in the DC Metro Region we can always stop by Sticky Fingers Bakery in Columbia Heights, another winner of cupcake wars, for a vegan gluten-free cupcake!  The big kahuna cupcakeries are also jumping on the gluten free bandwagon.  Bakeries like Sprinkles Cupcakes provide customers with a red velvet gluten free cupcake. You can tell it is gluten free because it is marked with a big red “G” on top!

From coast to coast you can find bakeries offering gluten free cupcakes but what about baking them yourself??  Cupcakes are a great home-made good to bring to a friend’s dinner party, they are simple to transport, easy to eat (don’t require utensils) and are sweetly delectable.  Baking gluten free though, is no walk in the park…or is it?

The days of trying to find the perfect ratio of garbanzo bean flour:qiunoa flour:amaranth flour are over!  You also don’t need to search to the ends of the cyber world for a “gluten free” recipe that is more interesting you’re your traditional vanilla or chocolate cupcakes.  I’ll be real; you will have a hard time finding a gluten free recipe for the “raspberry cream cheese chocolate swirl cupcake” that your friend posted on Pinterest but with products like Glutino’s Gluten Free Pantry’s All Purpose GF Flour and King Arthur Flour’s Multi Purpose GF Flour the days of questing for specific gluten free recipes are over. Whenever you find a recipe that calls for 1 cup of all-purpose flour, you simply grab your box of all-purpose gluten free flour and get started! You can check out my review of gluten free all purpose flour here!

I recently made gluten free tiramisu cupcakes that completely exceeded my expectations! I am not a baker and always thought that baking gluten free and from scratch was simply off limits given my lack of experience.  It turns out, anyone can be a gluten free baker if they want to be. Now, if you hate hearing things like “I can’t believe this is gluten free!!” then don’t make these cupcakes because I guarantee you that people who eat them will shout this while devouring your glorious gluten free goodies.  The trick to baking, especially baking gluten free, is following the recipe exactly. Minor deviations can really mess with the texture and denseness of the cake.

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For this recipe, and others like it, I suggest investing in 1-2 mini cupcake pans. They are great for desserts, snacks and are just a bit cuter than your average cupcake.  The cupcake recipe is for a basic (and delicious) vanilla cupcake based on the recipe by Vegan Cupcakes Take Over The World.  You can use this recipe for making a ton of different cupcake varieties. This post gives instructions for turning a simple vanilla cake into a tiramisu delight!

Step One: Bake Your Mini Cupcakes

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Before you get started, make sure you have mixing bowls, an electric mixer or hand mixer, cupcake liners and the like! You do not need a Kitchen Aid Mixer in order to bake this recipe; however, it is my absolute favorite tool in the kitchen! It makes baking so much easier!  If you have one stashed in a cupboard somewhere now is the time to use it!

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Ingredients: 1 cup soy milk

1 teaspoon apple cider vinegar

1/3 cup canola oil

2 tsp vanilla extract

1 1/4 cups all purpose flour

2 tbsp cornstarch

3/4 tsp baking powder

1/2 tsp baking soda

1/2 tsp salt

3/4 cup granulated sugar

  1. Combine soy milk and apple cider vinegar in a bowl and let sit for around 10 minutes (this allows the soy milk to curdle)
  2. Combine all dry ingredients in a bowl. Mix together using a fork
  3. Put all wet ingredients into a mixer and mix on low for a few minutes
  4. Add dry ingredients to the mixing bowl a little bit at a time until all ingredients are combined
  5. Pour batter into lined mini cupcake pan and bake at 350 degrees for 22 minutes

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Step Two: Make Your Tiramisu Frosting

Ingredients:

8 ounces mascarpone

1 cup heavy cream

½ cup powdered sugar (confectioner sugar)

cocoa powder and cinnamon (for dusting)

  1. Use electric mixer to whip the heavy cream. Set mixer on medium speed until you see stiff peaks form in the cream
  2. Combine the powdered sugar and mascarpone in a separate bowl
  3. Gently mix whipped cream and mascarpone mixture together until smooth
  4. Put frosting into plastic baggie and save in fridge until cupcakes are ready

**If you would like a vegan frosting combine ¼ cup margarine ¼ cup vegan cream cheese and 3 cups of powdered sugar in an electric mixer (I add cinnamon and nutmeg for an extra kick).

You will want to use a Ziploc bag so that you can cut the tip off, forming a makeshift pipette tool for frosting the cupcakes!

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Step Three: Assemble Your Cupcakes

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If you want to give your cupcakes that irresistible coffee flavor that people associate with tiramisu then you need to brew yourself a cup of Joe!  I use my Keurig to make a small cup of hazelnut coffee for my cupcakes, there is no need to brew a whole pot of coffee for this.  Once your cupcakes are finished baking you will need to cut out a small cone-shaped chunk from the center of each cake. You will drizzle a few drops of coffee into each cupcake. Be careful not to saturate the cake with coffee. You don’t want the cake to be mushy in the center.

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Once you have drizzled the coffee over the cakes it is time to get out your frosting. Cut the tip off of your Ziploc bag, forming a pipette and get to work! Once the cupcakes are frosted dust them with cocoa powder and/or cinnamon (I use both!).

Voila! You have now made interesting, delicious, gluten free cupcakes!

The next time you are invited to a dinner party and feel stressed about the dessert option just bring a batch of mini cupcakes! They are the perfect gift to a host because they are small enough that they don’t have to be the main or only dessert but substantial enough that you can feel included in the dessert course even if you can only have the cupcakes.  Mini cupcakes are simply a great addition to any event or meal.

Happy baking!

-CC

This Week On The Hill: Celiac Disease and Politics

4 Mar




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When I moved to Washington DC to teach 7th grade Science I never thought that I would end up in the offices of Senators and members of the House promoting legislation that will benefit the gluten free community. Advocating for the gluten free community is one of my greatest passions, it is why I started this blog, go to events and volunteer for many of the gluten free and/or Celiac nonprofits in the United States, but I never thought I would have the ear of the US government.

The Digestive Disease National Coalition held its annual public forum, uniting people from across the digestive disease spectrum for one cause: get our needs on Congress’s radar. DDNC held multiple informational lectures on Sunday preparing the volunteer advocates for our day on the Hill. Sunday night ended in an amazing Welcome Reception. I never expected to worry about over eating at a Digestive Disease event but the food was incredible and 100% gluten free despite the fact that Celiac Disease is only a small subset of the overall coalition. Katz provided the gluten free desserts as well as toast and muffins for breakfast the next day.

The Digestive Disease National Coalition unites people advocating for the treatment and prevention of conditions ranging from colorectal cancer to pancreatisis to gastro paresis to Celiac Disease to Chrons and much much more. The showing of volunteers was truly inspiring because we had policy makers, presidents of nonprofit organizations, patients and the families of patients all working together to promote legislation that will help cure, treat and prevent digestive diseases. I met cancer survivors who showed up to support people still fighting for their lives. I worked with people who were physically exhausted by the end of the day because they are living with serious chronic illnesses. The solidarity demonstrated by the digestive disease community is something to be revered.

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Although I am from California, I was representing the state of Maryland today, my current residence. I was happy to be with Team Maryland because Marilyn Geller, Chief Operating Officer of the Celiac Disease Foundation, was here representing the political needs of Californians living with Celiac Disease. Alice Bast, president of National Foundation for Celiac Awareness, was here representing Pennsylvania along with a small cohort of other members of NFCA. I was very proud to be a part of the Celiac cohort present at DDNC.

DDNC divided our coalition by state, forming teams of around six people. The teams were responsible for planning what would be pushed for during our meetings with Senators and Representatives and had to elect a team leader to facilitate the discussions. I was elected leader for Team Maryland which was both humbling, terrifying and exhilarating.

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I met with the offices of Senator Mikulsi, Senator Cardin, Representative Ruppersberger and Representative Van Hollen. The main goal of our visit was to push for an increase in National Institute of Health funding from $31 billion to $32 billion. Honestly, it was an easy sell given the fact that the people I met with were democrats, on various health committees and the NIH is located in Maryland so its funding directly impacts the state by increasing jobs in the health field.

You may be wondering what can Congress do for someone living with Celiac Disease. That is a fair question, unlike many diseases and conditions out there, Celiacs doesn’t have a very long or involved legislative agenda, something the gluten free community hopes to change in the next few years. However, there are a few issues that are pretty significant: 1. Gluten Free Labeling Laws 2. National Celiac Awareness Month (May)

Currently, the gluten free labeling bill is being reviewed in the Office of Management and Budget which is great. It should get sent back to the FDA soon for approval. The main issue I focused on in my Congressional visits was the declaration of May as Celiac Awareness Month.

In a time when budgets are tight and sequestration has broken the hearts of many members of Congress, pushing for meaningful legislation that doesn’t cost Congress a dime is pretty heart warming business. There is no reason for Congress not to proclaim May as National Celiac Awareness Month; however, there is a risk that this issue gets overlooked given the complicated political climate. My goal was to get this House and Senate Resolution on their radar.

I explained to the members of Congress that Celiac Awareness Month is incredibly important to our community. For one thing, the biggest challenge with living gluten free is the overall lack of awareness in the general population about the condition. Celiac Awareness Month helps get the word out because not only does the government get involved but it gives nonprofits like Celiac Disease Foundation, National Foundation for Celiac Awareness and the Gluten Intolerance Group a wonderful platform for awareness campaigns during the month of May. For example, last year GIG was able to reach over eight million people through their Chef to Plate program that has restaurants that currently offer gluten free menus promote Celiac and GF awareness for the month of May.

In addition to helping people currently diagnosed with Celiacs or gluten intolerance, declaring May as an official Celiac Awareness Month can help us increase the number of accurate diagnoses. This is where I got the attention of Congress: misdiagnosed Celiac patients are a drain on the economy. Before diagnosis, many Celiacs see close to ten physicians, racking up medical bills. Additionally, they are usually prescribed medications to treat symptoms that could be completely eradicated by following a gluten free diet. They undergo expensive procedures like endoscopies, blood tests, colonoscopies etc racking up more and more medical bills, potentially going into debt. Furthermore, undiagnosed people tend to be very sick, they may have to leave the workforce, start getting disability checks from the government or declare themselves as unemployed.

Personally, I feel like the quality of life arguments should be enough to tug at the heart strings of members of Congress but if not I am happy to make arguments that tug on the purse strings, and those arguments happen to quite plentiful.

I found overwhelming support for the Celiac Awareness Month Resolution. The staff aides asked me several follow up questions and even asked me for my contact information so they could get more information for their Senator on this issue.

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The Kennedy Caucus Room

I had such a wonderful time. Not only did I meet great people, true champions for their causes, but I got to spend time with NFCA and CDF as well as eat amazing food. I know the food is the least important part of the day but I have to admit it really was amazing to see gluten free accommodations made so efficiently and without error. The luncheon held in the Kennedy Caucus Room was a sandwich buffet that had gluten free and gluten-containing options but avoided cross contamination by separating and labeling the types of bread and providing condiments in packets instead of a common serving bowl and a knife to spread onto the bread.

The people I met today were so inspiring because many of them are patients who came out to represent the needs of people living with their conditions. These are people who took off work in order to promote a good cause, people who were willing to put themselves on the spot and speak to members of Congress about very personal matters. I have always said how much I love the gluten free community because it is such a supportive, connected and united group of people but what I didn’t know is that we have a host of brothers and sisters out there living with digestive diseases who are fighting the same battles for quality of life. I’m proud to be gluten free and proud to be a part of DDNC!

Consider signing up for the Digestive Disease National Coalition next year! It is an experience worth having!!

-CC

Flying Gluten Free: an experience of note

14 Feb

With the recent announcement of the merger between American Airlines and US Airways, it seemed a good time to discuss how to be gluten free while traveling.  Based on my customer service experience, it honestly might be preferable if US Airways didn’t save American from their financial crisis.  Being gluten free is challenging even with the many dining options we have on land. If one restaurant doesn’t work, you can always hop in your car and try another. Take us up 30,000 feet into the air and we may be in for what will feel like a very long trip with very few options, if any at all.


Does being gluten free change the way I travel? Absolutely.  There are some things you should take into consideration before hopping on your next 757 to make sure you are prepared. The lesson I learned from traveling with American Airlines? Pack some snacks or starve.

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I found that the flight attendants were inequpped to deal with gluten free needs.  Here was my experience with American Airlines on a flight from LAX to DCA on December 29, 2012:

I arrived at the airport at 6:30am. In an attempt to sleep as much as possible the day of the flight, I decided to forgo eating breakfast and sleep for an extra ten minutes instead.  I didn’t realize how hungry I was until I was on the plane and my stomach started to growl angrily at me.  When the flight attendant came around with the drink cart I knew this was my chance: “Excuse me, do you sell food on this flight?” The attendant responded by handing me a menu of overpriced items I could purchase. Over priced or not, it was still food and I was hungry. Every option had gluten. The one thing I saw that could potentially work was a bag of potato chips. All I needed was to read the ingredients and I might be in the clear. I asked if I could read the ingredients on the bag because I have food allergies (a colloquialism I adopt to avoid lengthy conversations about the immune system and molecular biology when trying to place a simple order). The attendant told me she was all out of chips. Plan B: ask if the fruit and cheese plate came with crackers wrapped separately or touching the food already.  When I asked the attendant about the crackers she starting laughing and rolling her eyes at me and said “Why would I know if the crackers are wrapped up?” I asked her if I could see the cheese plate and she said “Well, are you going to buy it?” while begrudgingly taking out the cheese plate from the cart drawers. The crackers were in separate packaging from the fruit and cheese (yay!).  I handed her my Visa card feeling torn about whether or not I should say something about her chair-side manner.

The last time I didn’t speak up for myself I ended up eating a bowl of spaghetti (gluten spaghetti). As someone who proudly wears a CC Gluten Freed bracelet stating “OWN IT” on the back, I reminded myself who I am and what my charge is: make this world more gluten free friendly. I knew I needed to say something. Not wanting to be overly confrontational (a common problem for an advocate) I added in a “ma’am” to show respect.

“Ma’am, in the future, please don’t make it hard for customers to ask questions about allergens because our interaction made me feel very uncomfortable about making sure the food was safe for me. It would be awful if someone stopped asking questions because of the way you react to them and wound up gttting sick or going into anaphylactic shock on your flight.”

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 The attendant seemed very offended by what I said and started arguing.“I didn’t say anything. There is nothing I can do about the fact that you have your allergies. You asked me a question and I didn’t know. I have people always tell me they are allergic to peanuts and try to get me to tell the person next to them not to eat peanuts and I always tell them there is nothing I can do about that. I can’t do anything about food allergies and you asked me something I couldn’t answer.”

Not to beat a dead horse because I know all of my readers would be appalled by this reaction, but I just want to point out a few things:

  1. Who said anything about asking other customers not to eat peanuts? More importantly, who said anything about peanuts??
  2. There IS something you can do if someone with a peanut allergy asks for assistance. Talk to the customer with the peanut product, protect the people on your flight and advocate for your customers (that is your job b.t.w.)!  How hard is it to say “Ma’am (or sir), I am sorry but is it possible to eat a different snack because we have a peanut allergy on board.”
  3. I did not ask her a question she couldn’t answer. In fact I didn’t even need an answer from her. I just wanted to see the cheese plate before purchasing it.

 

Anyways, back to the story: I told the flight attendant that I wasn’t accusing her of anything, I just wanted to help avoid a problem with future customers. By the end of the peanut-rant her voice was raised and I wanted to end the conversation with dignity. I said “I appreciate your work here and am glad we could spread awareness about this issue today. Good day!” For the record, “Good day!” sounded cooler and more dismissive in my head than it did when it awkwardly came out of my mouth, but what can you do?! 

Advocating for yourself is not easy.  I have never shied away from a good debate but, advocating for yourself can be so challenging. After that flight attendant walked away I felt all shaky and uncomfortable.  It didn’t help that planes are so confined that I had a built in audience for this encounter.   I think the uncomfortable feeling I was left with is much preferable to the gnawing sense of guilt I would have felt had I not spoken up about the issue. I think bloggers should absolutely practice what they preach!  I take promoting gluten free awareness so personally. This blog is a testament to my passion for helping us, all of us, be safe, healthy and as stress free as possible. 

Moral of the story? Always speak up for yourself because it isn’t just about you, it is about all people with food allergies (dairy, peanut, wheat, whatever), or intolerances or Celiac Disease.  At the very least, I hope my confrontation was uncomfortable enough for the attendant that she thinks twice about scoffing at people with food allergies, if not for the right reasons, then at least to avoid an uncomfortable conversation.   Other moral? If you pack snacks you won’t have to give the gluten speech, plus, your snacks are probably much tastier than what the airline carrier can offer.

And, of course, I will be sending a letter to American Airlines as I always encourage my readers to whenever they have a negative gluten free customer service experience.

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Let’s hope the merger with US Airways brings about financial success for both airlines, more flights for customers and much better customer service!

-CC

 

CC Gluten Freed’s Best of 2012

5 Jan

As the nation reviews the employment, or rather unemployment, data from December 2012, I too feel inclined to take a look at some numbers. CC Gluten Freed had a fantastic year when quantified in terms of hits and viewer traffic! Now, asking a blogger for the number of hits per year/day/whatever is similar to asking a woman her age: it is simply impolite. I will happily reveal some of my aggregate data and post CC Gluten Freed’s top hits of 2012! Just as NPR reviews the best podcasts, I will be reviewing my top posts of this year for you to share with friends or just enjoy for a second read through.

Best-of-2012

#1 Post of 2012

So you want to take a cooking class…

This post offers advice for taking mainstream cooking classes while being gluten free.  The cooking classes advertised as “gluten free” are usually special courses offered sporadically at cooking schools, local markets and local stores.  Gluten free people need to be able to cook for themselves since restaurants always pose a risk and bringing a dish to dinner parties is always a must.  How are we supposed to become master cooks when the only classes we attend teach gluten free baking and/or are hyper-specific classes eg a specific type of cuisine.

I wanted to take a cooking series that covered all the basics of cooking: knife skills, sauces, meats and poultry, baking, grains etc. Check out the top post of 2012 to find out how I managed to make my experience a gluten free on. 

#2 Post of 2012

The Domino’s Effect

Remember when Domino’s thought they were being gluten free? This post looks at the situation critically and examines both sides of the issue: was Domino’s position on gluten free pizza a valid one? Spoiler alert! I conclude that it was an absolutely abhorrent decision on Domino’s part.

In this post I applaud the NFCA for making sure that Domino’s did not falsely advertise their pizza. GREAT Kitchens was able to evaluate the kitchen practices that Domino’s intended to implement and concluded that their kitchen practices are not safe for Celiacs.

In addition, I point out the negative implications of such careless actions on Domino’s part.  Do the decisions of big companies have a domino effect?  Read to find out!

#3 Post of 2012

The Importance of Letters

The third favorite of 2012 is “The Importance of Letters.” I am glad that this post ranked so high in terms of traffic because this was one of my founding pieces for CC Gluten Freed.  The whole idea behind this blog is to spread awareness and teach my readers how to advocate for themselves and other people living with Celiac Disease.   This post discusses the what, when, where, why and how of writing letters to restaurants about gluten free customer experiences.

Check out how you can make a difference by spreading the word.

#4 Post of 2012

The Unsuspecting Celiac: Five Things That May Be Getting You

I am also glad that this post had so many views because it is a great resource for people who are gluten free but are still feeling symptomatic. In some cases, people let bits of gluten slip into their diet from some unexpected sources!  This post looks at five foods that a lot of gluten free people continue to eat even though they shouldn’t.

My favorite part of this post is the very end. I tell you five things you may be surprised to realize that you CAN eat!

#5 Post of 2012

Recipe: Quinoa with Cucumber and Mint – White Sea Bass with Orange-Tarragon Relish 

Coming in at #5 we have my recipe for cucumber mint quinoa!  This recipe is absolutely delicious!  It is a great dish to serve in the summer time because it is filling yet refreshing. I include little changes you can make to this recipe to keep things interesting. You can use this versatile recipe in so many contexts.

One tip: the Quinoa dish is perfect for bringing to a dinner party as a gift for the host.  It is filling enough so that if there isn’t anything you can eat your plate will still be full (as well as your stomach) but the dish is light enough that it won’t steal the show from whatever main entree your dinner host is serving.

Check out this post for the recipe!

 

 

Here’s to another year of great posts and many readers!

 

-CC

Gluten Free New Year’s Resolution 2013

30 Dec

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This is my second, and now annual, Celiac/gluten-free New Year’s Resolution post on CC Gluten Freed. The gluten free diet is so much more than a diet. In fact, I usually describe myself as “being gluten free” as opposed to following a gluten free diet. Semantics, yes, but an important point none-the-less. Being gluten free means adapting a whole new relationship to food, something that shapes our every day lives, holidays and traditions. Considering how complicated and challenging being gluten free can be, it seems appropriate to make our New Year’s Resolutions at least related to improving our health and gluten free lifestyle.

Last year I had a slue of NYRs all about improving my gluten free lifestyle. You can check out last year’s list here but in summary, I decided to:

1. Be (even more) gluten free – this means making smart, safe choices at restaurants like getting a salad instead of french fries due to risk of cross contamination.

2. Become informed — I vowed to start following GF blogs so that I can stay current on what other GF advocates are up to.

3. Get techy — there are many phone apps out there that make being gluten free much simpler. I decided to start using those applications including, my favorite, Find Me Gluten Free, an app that takes your GPS location and gives you a list of GFF (gluten free friendly) places nearby.

I wrote a follow-up last June about how I was doing with my NYRs and, I swear this to be true, I was pretty good about staying committed. In years past my new year convictions have always been more like token resolutions. “I will go to the gym every day!” or “I will eat salad at every single meal!” Though enthused, I never seemed to follow through with my generic resolutions. The problem? Conviction. I did not take the time to hash out the reasons why the resolutions were meaningful to me and, not surprisingly, they fell to the way side as the year started getting busy and hectic. I am proud to announce that for 2012 I successfully adopted all of my GF-NYRs and improved my gluten free life as a result.

My resolution this year is much simpler than my complex list of 2012 gluten free NYRs. This year has to do with defense and preparedness. The ability to absorb nutrients is often more limited in someone with Celiac Disease compared to the average Joe. Here’s why: the gluten free diet only works by completly eliminating gluten, not by merely limiting it. Many newly diagnosed believe that a low gluten diet will have close to the same benefits as being exclusively gluten free and that, my friends, is a misconception. When people think of a “diet’ they typically think of weight loss and we all know that if we limit our caloric intake we will lose weight. The more calories we restrict, the more weight that will be lost. Disclaimer: this is an over simplification of metabolism and weight loss but, in simplest terms, the relationship between caloric intake and weight loss is directly proportional whereas the relationship between nutrient absorption and gluten intake is more complicated and convoluted. Even trace amounts of gluten can trigger the production of counterproductive antibodies that will damage your small intestine. My point is that if you kind of diet, you will kind of lose weight whereas if you are kind of gluten free you will not be kind of symptom free, you will remain in the pain and state of malnutrition that originally provided hints for your diagnosis.

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Even compulsive Celiacs like myself (I say that in the most endearing way possible) cannot completely avoid gluten due to cross-contamination and accidents that will inevitably occur despite your best efforts. How can we prepare our bodies for such encounters? What can we do to compensate for the fact that we may not be absorbing nutrients as efficiently as a none Celiac?

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My NYR for 2013 is to take a daily vitamin, religiously, strictly and obligatorily. We have all heard doctors, moms and the like push us to take a daily vitamin but how many of you actually do it every day? I am super health conscious and still happily skip swallowing the disgusting smelling pellet of nutrients frequently. As a Celiac, I need all the nutrition I can get. If I don’t pay close attention to my diet, I cannot guarantee that I am getting all of the vitamins and minerals I need on a daily basis, deplting my body’s supplies and holding myself back from better health.

This year, starting January 1,2013 I will be taking my daily vitamin every morning, even if it is an unpleasant way to start the day. I have decided on taking Multi Vites Gummies. The benefit is that it is labeled as gluten free and the taste and texture of the vitamin but it does not have iron which means I will need to go the extra mile and buy an iron supplement as well. I advise not skipping out on the iron. Iron is essential to your body running properly, it is found in every cell of your body, helps with oxygenation and, if you don’t have enough iron in your body, you may experience fatigue.

Make sure the vitamin you pick is labeled gluten free!! I read through the ingredients on a gummy vitamin made by One-A-Day and concluded it was GF only to find that the allergen label said Contains Wheat! There are so many odd ingredients in vitamins that we may not recognize a potentially gluten containing ingredient so go for something with a GF label!

You may think I am being too picky, I mean come on, it is just a vitamin! Keep in mind that this is something that will start off my day for the next 365 days. The decision is not a small one! What I decide to take will impact my year and potentially my health. I want to make sure I make an informed decision.

If you are really interested in supplements and daily vitamins, another great choice for a Celiac is Fish Oil/omega 3s. The fish oil supplements work to combat inflammation in the body. Celiacs is an inflammatory condition: the antibodies we generate in response to consuming gluten cause a lot of inflammation in the body (thus the arthritis many experience prior to diagnose).

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I know it may not be enjoyable to have a regime of pills every morning but think of it this way: we have a disease where the treatment is not a pill cocktail but rather a diet. Even though being gluten free is challenging we are very lucky not to have to deal with side effects and financial expenses associated with prescription medications like the price of seeing the doctor to get your prescription followed by the actual price of the medication. As far as excuses go, we don’t have many with merit to not take a daily vitamin especially considering the nature of Celiac Disease in relation to absorption and nutrition.
Like last year, you can expect a follow up from me in June 2013! In the spirit of no-secrets-blogging, I will even post a copy of my blood work from 2012 compared to 2013 to see if the daily vitamin is making a difference!

Cheers to a new year and to preventative care and newly improved health!

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-CC

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Tweaking Tradition: Holidays

19 Dec


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It is that time of year again! We have shining lights on all the streets, the fire light of Menorahs shimmering through windows and stars twinkling atop 6-foot tall trees.  The winter holidays are by far my favorite despite the accompanied stress they tend to bring.  Personally, I love when the whole family gets together for the holidays. We don’t have any of the often satirized family drama you see on TV and in the movies about family gatherings during the holidays.  The holidays usually bring around a different type of stress for me: how to avoid gluten during all of the holiday dinner parties.  This year, however, this won’t be an issue because my family has figured out how we can tweak our Italian traditions to be totally gluten free.

If you have followed CC Gluten Freed since the beginning then you already know that my big Italian family has a big Italian Christmas Eve feast every year.  A couple days before the big dinner party a few of us would get together to make ravioli.  This isn’t any old ravioli either.  This is our family recipe that has been made for Christmas Eve dinner more Christmas Eves than I can count.  Growing up, it was fun. We would make the dough and fold each little bundle of goodness by hand, spilling flour all over the kitchen in the process (this was before my diagnosis with Celiac Disease).  After being diagnosed, we weren’t really sure what to do with our ravioli tradition. The first year we made our ravioli as usual but also tried making GF gnocchi which really did not work out. Our gnocchi tasted like mashed potatoes and egg!  My second Christmas as a Celiac we discovered the wonder of GF lasagna made with De Boles GF lasagna sheets. We could use the same meat mixture and sauce that we use for the ravioli just with a different starch-medium for it!  Instead of pining for the ravioli on everyone else’s plates, I was perfectly content with my personal lasagna. Year three and year four worked out the same way: ravioli for the gluten-eaters and lasagna for the gluten free guests.

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Close to five years after my diagnosis one very important thing in my family has changed: a good portion of us are now gluten free. My dad, brother, uncle, aunt and grandma. In fact, the only people who would be eating the ravioli would be our family friends at our Christmas Eve dinner party! So what do to? It seemed odd to spend 12 hours cooking a meal that not a single Bonaduce would eat.  How can we tweak this tradition to be gluten free but still please out guests who wait all year for Bonaduce ravioli?

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My Aunt came up with the answer: a modified ravioli-lasagna. Traditionally, lasagna is made with sheet-noodles, tomato sauce, ground beef, ricotta cheese and parmesan cheese (people add all sorts of other ingredients though to keep things interesting).  Also, traditionally, our ravioli is our secret-meat-mixture wrapped in dough. My Aunt realized that we could break down our lasagna until it is basically the exact same ingredients as the ravioli: noodles and meat mixture. We will serve it with the same sauce we serve with the ravioli.

This year we will have (1) GF traditional lasagna, (1) GF vegan lasagna, (1) ravioli-lasagna and a host of side dishes ranging from caprese salad to Italian brijole (all GF).

It is sometimes hard not to feel like the Gluten Free Grinch who stole christmas.  I mean, this was a family tradition for years and years and, I will be honest, I do feel like I ruined it (just a bit). But let me remind you of something very important: the Grinch ultimately saved Christmas and was invited by the Whos the dig in for the holiday festivities.  So yes, maybe I stole this tradition from my family but now we have an even more meaningful tradition. We came up with our own recipe for a hybrid ravioli-lasagna. We have all heard the saying “change for the sake of change is no good.” Well, along those lines tradition for the sake of tradition is also no good.

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I’m very lucky to have a family that is so supportive but I know there are a lot of people out there with Celiac Disease whose families have not yet realized what a fundamental life change the diagnosis represents.  All I can tell you is to hold on, advocate for yourself relentlessly and it will get better.  My first christmas after my diagnosis I didn’t even know how big of a deal being diagnosed with Celiacs was. I even helped my the ravioli that year and wound up feeling ill from all the air-borne gluten.  It takes time for people, yourself included, to get a hold of what it means to be truly gluten free.

My advice? Start the conversation about tweaking traditions now.  Maybe you can’t change things for this christmas but at least you can dialogue with your holiday guests about what to expect next year!

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-CC

FAQ: “So…what happens to you when you eat gluten?”

6 Dec

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One of the most frequently asked questions has got to be “What happens to you when you eat gluten?” This is a pretty reasonable question considering how serious and dire I sound when talking about being GF.  When I order, I double and sometimes triple check that the server understands my needs, I always bring a side dish to dinner parties just in case and many of my friends have seen the blood drain from my cheeks when I suspect I have just been cross-contaminated.  So what is all the fuss about? I mean, what happens to a Celiac who eats gluten?

For years I have given a textbook-perfect answer to this question. You know, the whole “the lining of my small intestines flattens and I can no longer absorb nutrients” speech. I do this partially because it makes it less personal but mostly because I have not had a significant amount of gluten sneak into my diet since becoming gluten free. I know what it was like before being gluten free.  I know how to describe what living with untreated Celiac Disease is like but I did not know what would happen to me if I, say…decided to eat a bowl of spaghetti out of the blue.

In short, I really didn’t know what would happen if I ate a significant amount of gluten, as opposed to the trace amounts I have been exposed to since my diagnosis.  

Unfortunately, I am now able to answer this question with more accuracy and detail than I’d like.  The memory of this Thanksgiving break is still very fresh in my mind. If you are wondering what happens to a highly compliant Celiac after eating a bowl of gluten, you are about to find out.

On Wednesday, November 21, I boarded a flight heading from Washington DC, my new home, to Los Angeles, California.  I had a plan: I wasn’t going to eat breakfast so that I could save room for my favorite food in Los Angeles: GF Spaghetti from Rosti in Encino.  The second I got off the plane I sent a text-message to my dad that read: “Landed! Can we go to Rosti????”

Once I got to the restaurant I ordered GF Spaghetti with Pink Sauce.  When the server brought me the bowl I noticed that the pasta looked different from the last time I was there, about three months ago. Rosti is pretty good about being gluten free. They know all about using fresh water to cook the pasta and designated-gluten free utensils to serve the dishes.  I was pretty confident in their GF protocol but, as an ever-vigiliant Celiac, I decided to double check anyways. I told the waiter that the pasta looked different to me and said “Are you sure this is the GF spaghetti?” He confirmed that it was and I dug in!

After the meal my stomach kind of hurt, nothing major.  As I got to the car, it started to really hurt. I pulled my mom aside and told her that my stomach was hurting and felt kind of crampy.  We decided that I probably upset my stomach by eating so and so much fast after not eating for almost 10 hours (what can I say? I’m Italian and I love my spaghetti!).

On Thanksgiving morning I sang at a tri-lingual Catholic mass with my family.  Halfway through the service I started to feel really woozy, then hot and then really nauseas.  My vision started to blur and black around the edges of my eyes.  I stumbled out of the church to get some air. I made sure I got some water since I thought I must be very dehydrated.

In the evening, while eating my turkey and mashed potatoes, I felt a weird pain in my chest. You know that sharp pain you get when you swallow wrong and it feels like you have gulped air?  I had a persistent pain at the top of my ribs between my chest and my back.  I thought I must have swallowed wrong and that the pain would go away.  When I got home, the exhaustion finally hit me and I collapsed into my bed.  I woke up at around 2:00am because of extreme nausea.  I got up and drank some water, once again, chalking my discomfort up to dehydration.  I woke up again at 4:00am nauseas again but this time frothing at the mouth (gross, I’m sorry but I got to keep it real).  I drank more water and went back to sleep.

The next day that weird pain in my chest had gotten even worse. I couldn’t eat, drink or breathe deeply without writhing in pain.  I had no idea what was wrong with me and had to make a tough decision: spend time with my family or spend the rest of my Thanksgiving holiday at the ER.  I decided to stay with my family. I figured that if something was really wrong with me I would have passed out by now.  At this point, I still do not know what is wrong with me. I definitely was not suspecting gluten.  I had never felt this way before!

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The only thing I wanted to do was get more spaghetti since I was leaving LA the next day. When we went back to Rosti the spaghetti that was put in front of me looked suspiciously different from the bowl I had eaten on Wednesday.  This is the moment when my mother and I started putting all the pieces together.  It wasn’t until the next day that I got my final clue and confirming evidence.

Three days after that first bowl of spaghetti at Rosti a blister, my final clue, appeared on my forearm.  It was the one symptom I could recognize as being from Celiac Disease.  The next thing I did was call Rosti to confirm my suspicions.  When I called I explained the situation which culminated in asking them “Do you have two brands of GF spaghetti?” The answer was no.  I had eaten an entire bowl of straight-up gluten.  I hate having to share this story about my favorite GF restaurant. They are the only place i have found that has GF spaghetti and I am definitely going back even though they really hurt me.

In the future, when people ask what happens to me when I eat gluten, I think I will stick with the short and sweet textbook answer.  The physical consequences I experienced after eating gluten were pretty terrifying and painful! The experience reminded me why I created this blog.  Living with Celiacs is so much more than just following a diet.  The stakes are really high.

When I don’t get contaminated for a while I sometimes lose focus, especially about the purpose of CC Gluten Freed. Sometimes I doubt myself and wonder why I thought it was necessary to start a blog that focuses on helping people comply with the gluten free diet. What’s a little gluten here and there?  It is at these moments that I slip up and wind up hurting myself. After truly finding out what happens to me when I eat gluten, I am even more committed to my charge: help the gluten free community stay happy and healthy by writing about how to deal with the inevitable social aspects of being gluten free.

The take away from my experience? 9 times out of 10 you will be the expert of gluten while dining at a restaurant. It does not matter if the chef went to the best Culinary school in the word or if your waiter’s cousin has Celiacs. You will be the expert and, consequently, you need to act that way. I had a gut feeling that something was wrong with the spaghetti.  I should have sent the waiter back to actually show the chef the pasta dish instead of just taking his word for it.

It has been a week since the glutening and I am still not fully well. I have been experiencing really extreme fatigue but my spirits are high and I know things will get better very soon! You can expect a How-To GF Holiday guide in the next week.  We have go to stick together during the Holidays, readers!  I will have some words of advice  on how to tweak traditions to make them gluten free and how to deal with Holiday dinner parties.

 

 

 

Happy December!

 

-CC

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