Archive | Advocate RSS feed for this section

CDF Education Conference!

30 Apr

What a successful conference!  I am sure all who attended will agree that the day of feasting and learning could not have been better.  The Celiac Disease Foundation pulled out all the stops for this year’s Annual Education Conference and Food Faire.

I had a table promoting CC Gluten Freed and got some great feedback from the gluten free community.  I am so pleased to report that many people have found the site very helpful and even inspiring!

I was lucky enough to be considered a speaker at an event where such prominent figures as Dr. Stefano Guandalini of University of Chicago Celiac Disease Center, Dr. Peter Green of Columbia University Celiac Disease Center and Dr. Gregory Harmon of the UCLA Celiac Disease Center were speaking.  I lead the Young Adult, Teen and Tween session, designing activities and giving a speech about the surprising social benefits of being gluten free, a silver lining, if you will. At the end of the session I raffled off three Kraft Mac N’s Cheese Powder bottles!  This is one of the only foods I have not found a perfect GF substitute for.  I quested for the powder (sold separately from the glutinous pasta) for days and days and am so glad I found it.  You should have seen the kids’ faces when they won the ingredients for the best Mac N’ Cheese in US history.

In addition to the great speakers and educational lectures at this event, attendees had access to over a hundred food vendors providing samples of delicious GF products.  I, personally, could not help but go back for a second serving of pizza at the Udi’s table!

I learned a lot not only from the speakers but from the gf people who stopped by my table.  For example, I met a ton of people who were diagnosed with Celiacs only after their children or grandchildren were diagnosed!  I wonder if this is because of the involvement of parents in children’s health, the quality of pediatric care in the US compared to adult care or if there is some other explanation!  I also received a lot for requests to purchase CC Gluten Freed wristbands for family members, support groups or gluten free clubs and organizations.  In response, I have made the bracelets available here! I, personally, always wear 3 of them so I can give them away if I meet a GF person on the road!  The bracelets are very fun and meaningful.  Check out the meaning behind OWN IT.

For those of you who are just joining ccglutenfreed.com after meeting me at the conference: WELCOME!  I hope you enjoy the blog.  I had such a great time at the conference.  It was a day I will never forget.

drawing a crowd at the CC Gluten Freed table!

CC Gluten Freed was located next to the University of Chicago Celiac Disease Center table!

vendor exhibits



-CC

Public Health 198: Changing the Restaurant Industry

8 Mar

UC Berkeley, one of the world’s finest public universities, allows undergraduate students to design and teach their own courses offered for academic credit.  I took advantage of this incredible opportunity offered by the university to promote Celiac Disease awareness and make an impact on both my campus and local communities.

Public Health 198 is a course offered for 2 academic units called Changing the Restaurant Industry.  The course focuses on how the restaurant industry accommodates customers with restricted diets.  By thinking of the restaurant’s ability to accommodate restricted diets as a public health issue, I was able to design an intervention strategy based on public health theories to improve the quality of food service in the Bay Area.

Public Health 198 is a series of 14 lectures all focused on promoting allergy awareness in the restaurant industry.  We covered the theory of Community-Based Public health Initiatives, concluding that the best way to improve our community is to have community-members take action.  The course requires that all students (40 students enrolled) recruit at least one restaurant to undergo a training program designed by the students.

Some well known members of the gluten free community have guest lectured for my class including Dr. Emily Nock of Walnut Creek Kaiser, Tom Herndon, the Executive Chef at Hipp Kitchen and owner of Full Fridge and Beckee Moreland from NFCA and GREAT Kitchens amongst many other speakers!

Topics of the course include: community-based public health initiatives, law and liability, peanut, egg, shellfish, corn, soy and dairy allergies, the gluten free diet, veganism, Diabetes Management and an introduction to entrepreneurship in the context of public health and the restaurant industry.

Check out this lecture given by Dr. Emily Nock about Celiac Disease.

Celiac Disease Lecture Part 1

Celiac Disease Lecture Part 2

Check out this lecture by CC about safe kitchen practices and restaurant concerns for gluten free food preparation.

Restaurants: Gluten Free Preparation Part 1

Restaurants: Gluten Free Preparation part 2

Please note these videos were made for students to review, not for professional purposes so please excuse the poor editing

The most important takeaway point from my experience creating this class is the importance of, what I like to call, contextual activism.  It is important to take ownership of your health and your gluten free diet.  One way to do this is to engage in awareness promotion and activism.  Contextual activism is where you base your actions on your personal life context.  I am currently a college student so I used campus resources to create a class to promote gluten free awareness.  You can do this too!  If you are a mom of a Celiac kid, create a play group for kids with allergies.  If you are a lawyer, consider guest blogging on a gluten free blog about law and liability in the context of “being glutened” at a restaurant.  There are countless examples of ways to get involved with awareness promotion: the trick is, creativity!

Take ownership of your life and your health.  Engage in contextual activism to promote Celiac Disease awareness.

-CC

Gluten Free Sandwich…from a Deli!

13 Feb

I have a hard time trusting non-gluten free restaurants, specifically pizza and sandwich places, that try and serve gluten free foods.  The risk of cross-contamination is so great that the uncertainty drives me nuts.  Not only is there an excessive amount of gluten ingredients floating around but also, I can’t watch the kitchen staff handle my order.  Honestly, it feels like a sick form of gambling, a Celiac version of Russian roulette, if you will.

Don’t get me wrong, I appreciate the effort that restaurants are making to provide food to GF customers, but I feel that they are targeting the gluten intolerant as opposed to Celiacs, which can be confusing and dangerous for consumers.

Despite my hesitations, I recently dined at a sandwich shop that offered gluten free bread.  Luckily, the sandwiches at this establishment are assembled within view of the customers so I had the opportunity to watch how they handled making a gluten free sandwich amongst a sea of gluten sandwiches!

As a UC Berkeley Bear, it is much to my dismay that my fabulous experience at the sandwich shop happened at Stanford University’s CoHo Cafe.  Here is what I observed:

First, when I ordered the sandwich, I told the cashier that my reaction to gluten is severe and that my sandwich “could not come into contact with any utensils or products that have been touching wheat.”  Similarly to how I sometimes describe a Celiac as being “functionally allergic to gluten,” I did not use the phrase “cross-contamination” so as to avoid confusion over jargon.

You should always remind waitstaff and/or chefs at restaurants offering GF products about cross-contamination.  Some places start offering GF products before they do the necessary research about safe kitchen practices.

After placing my order I watched as the person constructing the sandwiches read my order.  She promptly removed her gloves and took a few knives and a cutting board to a sink to wash them with soap and water. Next, she put on a new pair of gloves and grabbed a package of Udi’s bread from a cabinet.  Interestingly, these were the largest slices of Udi’s bread I have ever seen, they must have been special ordered.

The woman toasted the bread in a designated panini press.  While they were toasting, she went into a back room and brought out a small assortment of condiments that had never been used on wheat products.  She assembled the sandwich on the clean cutting board and cut it in half with the newly washed knife.

It was so great to watch such efficient and proper protocol!  I think Subway could learn a lot from this tiny sandwich shop!  Check out this youtube video of a gluten free customer at Subway checking for cross-contamination.  I also think that college campuses should try to catch up with Stanford’s quality service (I am cringing while typing this).  I had  a meal plan at UC Berkeley for a year and the sandwich station in the dining hall was 100% off limits for me.  Not only was there an unreliable supply of gluten free bread but the staff was simply unaware about cross-contamination and how to avoid it. You know someone has fantastic service when a Bear is willing to compliment the actions of anyone or anything even remotely related to Stanford, let alone a Cafe on their campus.

My sandwich was delicious.  Since my diagnosis with Celiac Disease, I have been craving a deli-made sandwich.  I don’t know why, but there is something special about a sandwich made by a deli…for some reason my sandwiches at home simply aren’t the same.

It is important that restaurants offering GF meals are aware about cross contamination!  Next time you dine out, try talking to your server or the chef about how the food is prepared. California Pizza Kitchen had trouble with cross contamination when they tried to offer  a GF pizza crust. How did they figure out there was a problem?  A pro-active Celiac spoke up.  Now, CPK is working with GIG to develop safe kitchen protocol for their GF products.

Cross-contamination is a serious issue.  You do not have to be an expert, you simply need to advocate for yourself, in order to help a restaurant improve their GF service.

-CC

Friends or Foes?

16 Jan

“We have to be careful that [the diet’s growing popularity] doesn’t negate the seriousness of the situation for people with celiac disease.”

Carol Shilson, executive director of the Celiac Disease Research Center at the University of Chicago

People who follow the gluten free diet but are not gluten intolerant, gluten sensitive or Celiac are a double edged swords when it comes to awareness.  As a Celiac, I both greatly appreciate and yet resent the people who jumped on the gluten free fad diet band wagon.  So, gluten free fad dieters…friends or foes?

Friends

Despite great improvements in the past ten years, awareness efforts have a long way to go.  Nonprofits have a natural audience consisting of Celiac patients and the medical community but do not have easy access to the general population.  Typically, people are not interested in things that do not specifically concern them.  Why would the average Joe care about an autoimmune disease that he did not have?  Awareness efforts are challenged by the fact that a substantial amount of people do not relate to the issue at hand: gluten intolerance and Celiac Disease.

Fortunately, the gluten free diet eventually caught the attention of health experts and dieters across the nation, sparking a new “fad diet.”  Consumers started asking more and more about gluten free options.  The word “gluten,” usually missing from the vocabulary of your average diner, is now becoming quite common.

When experts and dietitians started remarking about the health benefits of the gluten free diet, it made the gluten free diet relatable and relevant to the general population. The unintended consequence was a huge increase in the level of awareness in the general population, maybe not about Celiac Disease, but certainly about what gluten is.

Foes

Although the fad dieters made “gluten” a much more common utterance in restaurants, they have also morphed the reputation of gluten free people.  I tell people at restaurants to think of my gluten free diet like a nut allergy: even a trace will be terrible for my health.  I want people to group Celiacs with the anaphylactic allergies because, despite their physiological and definitional differences, it is a way for chefs and waiters to understand the seriousness of cross-contamination and double checking ingredients.

Now many people think of being gluten free  as simply a dietary preference or fad diet which changes the perception people have of those on a GF diet.  This means that chefs at restaurants are way less likely to avoid cross-contamination because they think of the GF diner as someone on Atkins or Weight Watchers.

I am grateful that so many people now know what gluten is but I am also very frustrated that the gluten free diet is being viewed as a weight loss tool or dietary preference instead of a medical treatment plan.

Implications?

I went to the Farmers Market in Santa Monica last weekend and witnessed the difference between catering to a gluten free dieter and catering to a Celiac.  One food stand advertised that they made “Buttermilk Pancakes” and “Buckwheat Pancakes.”  They did not say “gluten free” anywhere on the menu or on their stand’s sign.  The Buckwheat pancake ingredients are gluten free but they are cooked on the same griddle as the buttermilk pancakes.  They were catering to people who wanted gluten free food but did not need to be gluten free.

There is a difference between following a gluten free diet and being gluten free.

The stand adjacent to this one advertised breakfast burritos with etiher a whole wheat tortilla or a “Gluten-Free Brown Rice Wrap.”  Despite using the phrase “gluten free,” the wraps were heated and cut on the same surfaces as the whole wheat tortillas.  The cross-contamination was blatantly apparent!  I asked the cook if he used the same knives and cutting board for the GF option and he said “Ya..why?”

**I have already written a letter to this restaurant company explaining the problem with calling their menu item “gluten free.”  Check out the importance of letters and how you can make a difference!

Despite the knowledge of gluten in food, issues like cross-contamination still remain a barrier to health for people with Celiacs.  Make sure you are ever diligent in restaurants.  Ask your questions!  Just because a menu says “gluten free” doesn’t mean it is safe. There may cross-contamination issues that can be easily averted if you make sure to speak up for yourself while ordering.

While I appreciate the way gluten free dieters have contributed to the widespread promotion of information about  what gluten is, I am disappointed that the nuances of Celiac Disease and the gluten free diet have been muddled.  The point is…let go of any resentment you may feel towards people who consider the GF diet a fad and simply be grateful that they know what gluten is.  It isn’t perfect and it isn’t our desired endpoint but it is a step in the right direction. I hope that a deeper understanding of its importance will accompany the ever-growing popularity of the gluten free diet.

-CC

A Little Bit About…

30 Nov

Cc Gluten Freed is a blog dedicated to stream lining the gluten free lifestyle.  This blog provides readers with insights into the social implications of the gluten free diet, reviews restaurants and products and features gluten free recipes.

Unlike other gluten free blogs, Cc Gluten Freed highlights ways that you can make a difference in the gluten free community. On this site, you will find sample letters to restaurant managers and owners that have successfully changed several restaurants across the country.

In addition to promoting and providing tools for activism, this blog aims to provide readers with a guide for navigating a gluten-filled world.  The complex social implications of the gluten free diet are not easy to manage on your own.  This blog seeks to eliminate the need to learn by trial and error and provides nuanced advice about how to successfully be gluten free in any and all situations.

Cc Gluten Freed seeks to empower readers to take control and take ownership of their lifestyle. It is time to put your health first and learn how to effectively advocate for yourself.  Cc Gluten Freed should serve as both a source of information and inspiration because all of the information found here is based on the true life of Cc and her journey to being a gluten free activist.

 

-Cc

Managers vs. Owners

12 Nov

Who should you write a letter to if you had a bad experience at a restaurant?  To have the biggest impact and possibly result in an actual change in policy, you should send a letter to both the manager and the owner of the restaurant in question.

Why? Because they deal with different things and are motivated by different problems.  A manager is interested in the efficiency and success of the service at the restaurant.  Your letter to the manager should be very detail-oriented. The manager is interested in knowing where the problem occurred. What step in the service process failed the customer?  They need to figure out who needs further training. Is it the chef? The waitstaff? A busboy? Was it misinformation on the menu? The manager is interested in the “micro” level of the problem.

The owner of a restaurant is more interested in protecting the integrity of the restaurant either by avoiding bad press or by promoting the mission statement of the restaurant (which many restaurants have, especially in LA).

If you look at the letter sample titled “Letter to the manager – Untrained Waitstaff”, you can see that I am very specific and discuss my step-by-step experience at the restaurant.  If you look at the letter sample titled “Letter to the owner – Untrained Waitstaff”, you can see I discuss the integrity of the restaurant’s mission.

The duality of this approach is very effective.  When the manager is contacted by the owner about a “very disturbing letter” he received, the manager will already be brought up to speed.  Sending two, different and very specific, letters also shows that you are serious and committed to help fix this problem.

In the case of of “Untrained Waitstaff”, I was directly contacted by the manager by telephone.  We discussed what went wrong and she apologized and told me she would make efforts to fix the problem.  I received an email from the owner offering his apologies.  Two months after the fact, the owner sent me another email detailing what actions he has taken since receiving my letter to improve his restaurant. Here are some of the things that were brought up in his email.

“1. We’ve made changes to our wording on the menu to be more clear what the gluten-free choices are (and are not).

2. The servers now have buttons on the computers to alert the kitchen, as well as the server needing to type in the necessary messages.

3. The kitchen printer will alert the cooks to the alert (previously, it was up to the server to type in the necessary adjustments)

4. The servers will then place bright red coasters on the table in front of the guest, which will alert any other person who might be bringing food to double check.

5. When the dish is ready, the kitchen will put in a frilly sandwich pick that will only be used when there is a food alert, and when the food runner sees the pick, will know to check it and deliver to the guest with the coaster.”

The point is that we can actually impact the restaurant industry. Five steps were taken by this particular restaurant to make sure that they did not hurt another customer. These five steps would NOT have been taken if I hadn’t sent in letters describing my experience. This should serve as a message to us all: promoting awareness of Celiac Disease is our burden.  It cannot be done by the medical community and nonprofits alone and, believe it or not, we can make a difference.

Importance of Letters

12 Nov

One of the unique challenges of adhering to the gluten free diet is dining at restaurants. You’d think that because Celiac patients have such serious reactions to consuming gluten that restaurants would be well prepared to deal with such clients due to liability.  Unfortunately, this isn’t the case. People with Celiacs do not react immediately nor necessarily apparently.  This delayed reaction is, in essence, a get-out-of-jail-free card for restaurants.

Saying the words “peanut allergy” in a restaurant is quite similar to saying “bomb” at an airport.  Immediately the waitstaff begin to listen more carefully, you can watch as they make a large asterisk next to your order on their notepad.  I hope that one day people with Celiacs will elicit the same response out of waiters, but for now our burden is to learn how to effectively communicate what we need and why we need it in an efficient and persuasive manner.

I don’t mean to sound like a cynic, but the reason that restaurants are so careful with nut allergies is not, typically, out of compassion, it is out of fear.  Liability is REAL. We live in an incredibly litigious society.  Luckily, this fear of lawsuits can serve as a great motivator.  From my experience, nothing screams lawsuit more than snail mail.

Sending a letter to a restaurant that has “glutened” you can help change the way that restaurant responds, in the future, to customers who cannot eat gluten.  I have had several experiences now where a letter has resulted in a dialogue with mangers and owners about Celiac customers and what they can do to improve.  At one restaurant near my home in North Hollywood, the manager instituted a new policy that all GF meals must be on a different colored plate so that chefs and waiters do not ever get confused.  Colored plates solve the problem of “chain of custody.”  For example, you order a salad to be prepared GF, your waiter sends that order in to the chef who prepares the meal accordingly, another waiter  then goes to deliver the meal and realizes the chef “forgot” to add the croutons so he grabs a handful to complete the order before delivering it to you.

I am not saying you should threaten litigation, what I am saying is that any time a customer sends a letter accusing a restaurant of bad and/or hurtful service they will respond due to fear of potential future litigation threats. Sending a letter explaining what happened and why you are displeased can go a long way towards changing the restaurant industry.

What should a letter contain?

1. The date and time you were at the restaurant

2. Details of your experience (waiter’s name or description, what and how you ordered, any dialogue that occurred between you and the waitstaff)

3. What about the meal was not gluten free (cross-contamination? an ingredient? did the waiter have wrong information about a dish?)

4. Explain why it is important (what happened to you as result of your expereince at this restaurant)

5. Encourage a response (say you would like to speak with them further about your experience and what they can do to make it sure doesn’t happen again)

You can check out letters that I have written to managers and owners of several restaurants over the years and you can see their responses.  I have had a 100% response rate and, in 90% of my experiences, the owner or manager sent me another follow-up letter explaining what steps they took to improve their service.

Being “glutened” is, in all honesty, a victimizing experience that can weigh over you physically and mentally for weeks.  Letters are empowering, the perfect antidote to nonphysical effects of unwillingly consuming gluten.

-Cc

%d bloggers like this: