Opinions Aside, Why We Should Celebrate the FDA Gluten-Free Labeling Rule

The U.S. Food and Drug Administration’s (FDA) rule on gluten-free labeling is an accomplishment. Whether you fully support it or have several criticisms, this is a milestone that has been years in the making, and that deserves some celebration.

Let’s all take a moment to take a breath, consider what we’ve collectively achieved, and thank ourselves and each other for all the hard work that brought us here.

I was diagnosed with celiac disease over 20 years ago, and in the 10 years since the National Foundation for Celiac Awareness (NFCA) opened its doors, we have been working to improve the safety of gluten-free food.  I have been waiting day-after-day for the FDA to set a standard for gluten-free labeling, just as you have.  The moment we’ve all been waiting for is finally here.

On August 2, 2013, the FDA ruling hit and I was ecstatic that NFCA could bring you the news.  Because this news, despite the mixed emotions among the gluten-free community, is huge.  You can imagine the feeling here at the office.  The news hit, there was a collective gasp through the office, followed by the sound of fingers pounding away on computer keyboards.  We’ve been waiting and we were ready.  We knew the rule would eventually come.  The question was when.

It took nine years.  But we did it.  All of us.  Every single member of the gluten-free community, whether you’ve been diagnosed for 20 years or 20 days.  We all played a role in getting the FDA to finalize a definition because people living with and affected by gluten-related disorders are not a small minority of people.  By speaking up together, we’ve proven that this community is large and we have a big voice. The final rule means that the gluten-free community has been heard.

“Gluten-free” has made headlines over the past few years because of the fad diet.  But, when the FDA ruled on that Friday, celiac disease went right alongside the words “gluten-free.”  The media took notice of the autoimmune disease and the reason the gluten-free diet exists in the first place.  The ruling and its implications for people with celiac disease have been in The Associated Press, The New York Times, The Los Angeles Times, the front page of Yahoo!, MSN… the list goes on. That itself is something to celebrate.

I have seen the comments, questions and concerns from all of you on social media, listservs and blogs.  Some of you are thrilled with the regulations, and others are worried.  NFCA is keeping track of these and we’re compiling them so we can tackle your questions.  We are actively working on a free webinar series and complementary fact sheets so we can break down the final rule and help you understand what it all means and how it’s going to affect your everyday life.  There is a lot to this ruling and let’s be honest; some of it is downright confusing.  Just know that NFCA will get you all the information you need to make informed decisions concerning your health.  This rule is important to the staff here, too.  We’re also affected by gluten-related disorders.

For those of you who are concerned by the gluten-free labeling rule and its implications, your feelings are totally justified.  But, do take comfort in knowing there will still be certified gluten-free products, and the naturally gluten-free products we eat regularly are just the same.  While the FDA has not required manufacturers to test their products to ensure they contain less than 20 ppm of gluten, there is now an accountability system in place.  By putting “gluten-free” on a package, manufacturers inherently agree to meet the FDA standards and, with an official definition, they will be held accountable if the products fail to meet those standards.  It’s up to us to remain diligent and continue to advocate for our own health.

Keep asking questions. Voice your concerns.  Continue to tell manufacturers what we as a gluten-free community need from them. It is the persistence of the gluten-free community that pushed this ruling in the first place. There’s more work to be done, and while the FDA rule is a key milestone, you can count on NFCA and all of the celiac disease patient advocacy organizations to continue pushing for better options, greater safety, wider education and more research.  We’re just getting started!

So, as we dissect, discuss and debate the gluten-free labeling rule, let’s also take a minute to step back and appreciate what we’ve accomplished.  We have come a long way since the days of having to special order gluten-free food, and that’s a testament to our strength.  I strongly encourage you to take advantage of the free resources being developed now by NFCA to explain this ruling.  To continue this progress, we need to understand the new standards.  Whether we realize it or not, we as consumers do play a major role in shaping policy.

Let’s celebrate!  Our voices have been heard and that means we as a community have power. Together, we can continue to make changes.  We will make things better.

Alice Bast
President
National Foundation for Celiac Awareness (NFCA)

NFCA welcomes your comments and questions on the FDA Gluten-Free Labeling Rule.  E-mail them to webinars@celiaccentral.org. Your questions and comments will guide the development of our webinar series and other free educational resources that explain the FDA rule.  For the current resources, visit www.CeliacCentral.org/fda.

September 4, 2013 at 10:00 pm Leave a comment

Finding Self-Empowerment despite Limitations

The following guest post is from National Foundation for Celiac Awareness (NFCA) volunteer, Candice Clifford of Embrace G-Free.

What does, “expect the unexpected,” mean to you? This was an exact interview question, which was given to me during my international service trip (ISP) interview.   As I heard these words I felt both fear and a thrill of excitement.  However, as I thought more about this central ISP theme, I began to realize this phrase could describe my life for the past eight years.

I don’t understand why certain events have happened in my life, but I certainly know that each hardship has taught me valuable life lessons. While dwelling on the “why question” was a part of my grief process when I was first diagnosed with non-celiac gluten sensitivity (‘gluten sensitivity’), I quickly realized this was not going to help me live my best life.

As Robin Roberts of “Good Morning America” says, “make your mess your message.” Whether big or small, we all have our own challenges.  In the end I truly feel that you will not be defined by your “something,” rather people will remember you for what you did with your life after you faced adversity.

Finding Self-Empowerment despite Limitations: Meeting the Group

That’s me starting my journey of empowerment (Keep reading, I’ll explain).

After I was diagnosed, I was full of fear. Food, going out to eat and getting sick again were fears hat controlled my life. However, in 2011 I made a choice to make a change by starting my blog, Embrace G-Free. Not only did this help get me back cooking in the kitchen, but it also empowered me.

Empowerment is one of the words which is continually tossed around in my counseling classes. However, I truly believe empowerment is a concept that you can’t fully understand until you personally experience it.   As a future counselor I feel blessed that I will have the opportunity to help my clients become empowered. However, it is possible to discover self-empowerment without the guidance of a professional.

One of the best things you can do to achieve self-empowerment is set a goal; big or small, size doesn’t matter. What makes the difference is your attitude. Throw the self-doubt out the door. “I can’t” isn’t an option. By no means am I saying you will achieve all your goals. I for sure haven’t; failing is part of life.  It is possible you may discover a barrier which prevents you from achieving your goal. However if you take all the proper steps and know you did everything in your power to try and achieve your goal, consider it a success. In taking action rather than letting your dreams pass you by, you will begin to feel more empowered.

If you haven’t picked up on it by now, self-empowerment is something I am so passionate about because becoming empowered has moved my life in such a positive direction and has provided me with experiences which I am forever grateful for. Finding empowerment through my diagnosis was one of life’s “unexpected” moments, eventually leading me to achieving a goal which I was ready to give up on. However, a long-term college dream was achieved this past May when I was blessed to go on an international service trip to El Salvador.

Finding Self-Empowerment despite Limitations:  ISP Group

Me and my fellow students in the El Salvador ISP group

It was a long process to see if this goal could even be achieved. I started back in April 2012 and continued when I returned to school in September to make sure the sites could accommodate my needs. It was one thing to want to go on an ISP trip, but I needed to ensure I could do it safely. Patience, diligence, determination and an incredible program director helped me get through step one. Once I got the green light, it was onto getting over the hurdles of application selections and an interview process.

I will never forget the day I received the e-mail notifying me that I was selected to travel to El Salvador. I cried and would have screamed if I wasn’t at work. The planning process was incredible and in May 2013, my group and I were ready to head off to El Salvador.

Finding Self-Empowerment despite Limitations: Candice Clifford

How amazing is that view?

While many people see a service trip as a way to serve others, I can honestly say that the people and experiences I had taught me more than I could ever give to the people I served. Although I felt empowered prior to ISP, this experience truly allowed me to take my feeling of empowerment to a new level.  Not only was I faced with the challenge of new food allergy diagnoses a month before the trip, but while in El Salvador all my fears that I had prior to leaving happened. Despite this, I was OK.

Finding Self-Empowerment despite Limitations:  Building

I can honestly say that the people and experiences I had taught me more than I could ever give the people I served.

I truly believe it was my individual choices, which helped me overcome the challenges I faced. For example, rather then crying when I walked in the first night and realized I couldn’t eat the main meal, I took a deep breath to calm myself down, told myself it was going to be OK, and made an almond butter sandwich.  Overall that was one of the only meals I couldn’t eat and when I was unsure, I did without and turned to a safe option I brought with me.

After going on this trip I really began to realize even though food is our medicine, it doesn’t have to make or break our experiences. Of course enjoying some of the cultural dishes was wonderful and delicious, however, when I look back 20 years from now, I will not remember the foods I ate. Rather my memories will be of all the wonderful relationships I built during those 7 special days in El Salvador.

Food is our medicine, but don’t let it stop you from achieving your goals.  Become Empowered!

– Candice

About Candice Clifford & Embrace G-Free

Visit Embrace G-Free where you can find empowering tools to live your happiest and healthiest gluten-free life! Browse through great recipes, product reviews and helpful resources. Candice Clifford started Embrace G-free in January 2011, after being diagnosed with non-celiac gluten sensitivity. Follow her journey as she rediscovers her passions for baking and cooking. Candice shares her story with others to spare them from years of misdiagnoses and to inspire hope.

Follow Candice on Twitter (@CandiceRose90) and like Embrace G-Free on Facebook.

August 19, 2013 at 4:10 pm 2 comments

Gluten Free Cranberry-Orange Scones

The following post is from National Foundation for Celiac Awareness (NFCA) volunteer Annette Marie of Best Life Gluten-Free.

I had no desserts or snacks on hand today, and for me, that’s a horrible situation! I have a tremendous sweet tooth. So…out came the measuring spoons, cups, and other essentials.

There are certain flavors that go so well together…and these two are a perfect example: Cranberry and Orange.

I had a Cranberry-Orange Scone that was commercially made, gluten-free of course, and loved those tastes together. So, rather than spend $5.00 on one (“gulp!”), I decided to experiment on a recipe at home.  And you know what? It didn’t involve that much work or even that much time.

So, if you have the desire, and a little bit of time, try my scone recipe. And I’ll bet you can even change up the flavors once you’ve made this recipe and come up with something special that you’ll like just as much as I love these.

Gluten-Free Cranberry Orange Scones

Gluten-Free Cranberry Orange Scones

Gluten-Free Cranberry Orange Scones

Ingredients:

  • 2 cups All Purpose Gluten-Free Flour Blend (such as Arrowhead Mill), plus additional for dusting your board or surface.
  • 1 tsp. xanthan gum (Omit if already added to flour blend)
  • 1 stick cold sweet butter (8 Tbsp.) cut into small pieces. Keep cold until ready to begin adding.
  • 1/3 cup granulated sugar
  • ¼ tsp. salt
  • 1 Tbsp. baking powder
  • ¼ tsp. baking soda
  • ½ cup milk
  • ¼ cup heavy cream (If you like, use ¾ cup Half &Half instead of milk & cream)
  • 1 egg1 tsp. gluten-free pure vanilla extract
  • 1 tsp. orange juice- from a fresh orange
  • 1 Tbsp. orange zest – from same orange of course.
  •  1/3 cup cranberries – dried
  • Small amount Demerara sugar for sprinkling on top.

Directions:

  1. Preheat oven to 400 degrees. Line your baking or cookie sheet with parchment paper. No need to grease or spray.
  2. In large bowl, place all dry ingredients. Mix by hand just to make sure they are all incorporated together. Add the zest and combine.
  3. Take out the cold butter and “cut in” to the dry ingredients with pastry cutter tool or forks. Don’t use mixer here.
  4. In another smaller bowl, hand blend the wet ingredients including the egg and orange juice.
  5. Add the wet to the bowl with the dry. If you use a hand mixer, don’t beat too much. Once it gets a little stiff, stop and use clean hands. Form 2 balls. It should be easy to do this, since the batter will stick. If you feel it’s really too dry and doesn’t “stick together,” add a drop or two more milk. But not a lot of additional milk.
  6. On the dusted surface, place the two balls and flatten into 2 discs. They should be about 7-8 inches wide.
  7. Brush top with a little bit of milk and sprinkle with Demerara sugar.
  8. Cut with a sharp knife into triangles and using a flat spatula, gently lift off board and place on the parchment paper on your baking sheet.
  9. Bake for about 10 to 12 minutes, or until light golden in color.
  10. Cool on the paper, and store in air-tight container when cooled. (Don’t cover while warm or moisture beads will form inside.)

This is really easy to do, and makes a great breakfast treat on a weekend morning! Actually, it’s a nice treat at any time of day!

– Annette

Annette Marie

Annette Marie of Best Life Gluten-Free


Annette Marie of Best Life Gluten-Free

Annette is a native New Yorker, now living in New Jersey.  Since she was diagnosed with celiac disease well after the age of 50, Annette has made it her mission to raise awareness in the hopes that others won’t have to live for years with unexplained symptoms as she did.  Some of Annette’s recipes are inspired by traditional Italian recipes, but she adds other original gluten-free recipes to the mix.  Her “semi-homemade” and from “scratch” recipes are meant for busy families eating gluten-free.  For more of Annette’s gluten-free recipes, visit her blog at www.BestLifeGlutenFree.com.

August 12, 2013 at 4:41 pm 1 comment

Easy Gluten-Free Recipes for a Summer Block Party

I have three criteria for the perfect block party food:

1)      It has to be handheld.

2)      It has to be tasty.

3)      It has to get people talking.

With those stipulations in mind, I embarked on creating two recipes – one savory, one sweet – for NFCA’s Virtual Summer Block Party. The only requirements were that I use Blue Diamond’s new Artisan Nut Thins and one of the many gluten-free products from Go Veggie! (I chose the dairy-free cream cheese alternative because it seemed the most versatile.)

Gluten-Free Summer Block Party: Blue Diamond and Go Veggie Recipe Ingredients

Just a few simple ingredients made for delicious gluten-free block party snacks!

Products in hand, I proceeded to take a “Chopped!” approach and made my dishes using only the ingredients I could find in my kitchen. Since the whole point of the Summer Block Party is to help everyone feel more confident and included at food-centric social events, I decided to make my recipes not only gluten-free, but also vegetarian.

First up, I created a spin on stuffed tomatoes. I have looked at a number of stuffed tomato recipes online, but never have tried them myself. Some call for baking the tomato, but for this batch, I left the oven off. Instead, I crumbled up the Artisan Nut Thins and toasted them in a pan, which added a nutty flavor and crunch to each bite.

I’m not one for exact measures when creating recipes, so you’ll have to bear with me when I say just wing it on the amounts. Everyone has their preferred veggies-to-cream cheese ratio, and I tend to use more pepper than salt in my seasoning. So, customize it to your liking.

For the sweet dish, I first tried blending strawberries with the Go Veggie! Cream Cheese Alternative. What I didn’t anticipate was that the water in the strawberries would thin the cream cheese out too much. It was delicious, but didn’t have the heft that I was looking for in a cracker topping. My guess is that it would make a fantastic pie filling, especially if mixed with a gluten-free, dairy-free vanilla pudding. Chilling the mixture in the fridge also helps it set up.

In my second attempt, I opted for a deconstructed strawberry cheesecake. I mixed the cream cheese alternative with agave nectar, spread it on Artisan Nut Thins, and then topped it with balsamic glazed strawberries. This recipe earned a verbal declaration: “Winner!” For an even sweeter bite, I would recommend dusting the Artisan Nut Thins with some cinnamon and sugar and giving them a quick bake in the oven before adding the toppings. (Make sure they are completely cool so the cream cheese spread doesn’t get runny.)

If you ask me, these recipes offer more interest than the standard chips, salsa and fruit salad, but I’m eager to hear what you think. Invite the neighbors over, give these recipes a whirl, and let us know how it goes!

Stuffed Tomatoes with Gluten-Free Cracker Topping

Stuffed Tomatoes with Cracker Topping

Easy & delicious!

Gluten-Free Strawberry Cheesecake Bites

Gluten-Free Summer Block Party Recipes: gluten-free strawberry cheesecake bites

A simple, bite-sized dessert.

– Cheryl

July 25, 2013 at 10:50 am Leave a comment

Playing a Role in Research: Celiac Disease Drug Development & the Drug Information Association

Last month I had the honor of participating in the Drug Information Association’s (DIA) 49th Annual Meeting as a 2013 DIA Patient Advocate Fellow.

Because the gluten-free diet is currently the only treatment for celiac disease, some of you may be curious as to why I was interested in attending a meeting focused on the pharmaceutical industry and regulatory sciences.

Today we know that the gluten-free diet isn’t perfect – cross-contamination, isolation, constant fear of being gluten-ed, worry about finding a safe meal when dining out or traveling, the list could go on.

But these truths have not always been recognized or established.

Celiac disease was once considered a rare childhood condition that could be wholly treated by eliminating dietary gluten and these misconceptions significantly hindered research into pharmaceutical therapies for decades.

As one of the most commonly occurring lifelong genetically-determined diseases with an increased risk of health complications such as bone disease, infertility and intestinal and bowel cancers if left untreated, it is critical that celiac disease be recognized as a chronic condition worthy of the pharmaceutical industry’s attention.

Although a pharmaceutical treatment is absent from today’s market, it is exciting to have three treatments currently undergoing clinical trials in the US, each offering the patient population a unique solution for their celiac disease.

As these trials, and hopefully one day others, progress, it is essential that celiac disease patient advocacy organizations know how to navigate the pharmaceutical industry and the regulatory science field. An alternative treatment for celiac disease is no longer a hope but a reality and patients must learn about their important role in scientific research, how drugs are discovered and developed, and how clinical trials are conducted. In this case, knowledge is truly power.

A sincere thanks to Donna Mayer, the DIA Board of Directors, the 2013 Fellows, DIA Fellow Alumni, and the many professionals involved in the selection process and planning of this year’s meeting. It was a transformative experience and an incredible learning opportunity and I look forward to applying my new found knowledge to my work as a health communications professional.

Want more info?

Stay on top of the latest news in the world of celiac disease drug development and clinical trials by visiting NFCA’s new web section on these very topics.

Learn more about DIA and the DIA Patient Advocate Fellow Program.

– Kristin

 

July 23, 2013 at 11:01 am Leave a comment

From School Nutritionists to Food Scientists: NFCA Educates Far and Wide

The next few days will be particularly busy for our president, Alice Bast. She’s speaking at two conferences – the School Nutrition Association (SNA) Annual National Conference and the Institute of Food Technologists (IFT) Annual Meeting and Food Expo – in the course of 48 hours.

The two audiences are vastly different, but they both play critical roles in keeping our community safe. School nutrition teams are key advocates in coordinating gluten-free school lunches for children with celiac disease and other gluten-related disorders. Food technologists make sure we have gluten-free options in the first place, spending months testing new formulations and making adjustments to create gluten-free products that are tasty and safe.

I’ve had the privilege to work on both presentations, gathering facts, creating slides and rehearsing with Alice to make sure we are delivering the most up-to-date information and explaining why this topic is so important. With so much attention on the gluten-free “fad,” we believe it’s more important than ever to emphasize the medical necessity of the gluten-free diet and the serious health concerns associated with that need.

Alice will not be alone in sharing this information. She’ll be joined by some incredible people who are leaders in their industries.

At the SNA Conference, Alice will be presenting with Gabriela Pacheco, RDN, LD, SNS, a school nutrition consultant with a keen interest in accommodating special dietary needs. You may remember Gabriela from last year’s Back-to-School webinar; she served as our panelist and shared a number of helpful tips that parents can use when working with school nutrition teams.

At the IFT Meeting and Expo, Alice will be presenting with Jennifer Williams of Penford Food Ingredients, which produces the gluten-free starches found in many of your favorite gluten-free foods. Penford is constantly developing new ingredients to help manufacturers improve the taste, texture and nutrition of gluten-free products. It falls under the category of “things I never knew existed before I worked at NFCA,” but it’s a critical step in making sure your gluten-free food is not only safe, but also something that you’ll want to eat.

Giri Veeramuthu of PacMoore Products, a contract manufacturer that works on gluten-free products, will also share his insights during the presentation.

Our trade show presentations are one of those behind-the-scenes functions that make a big difference in our mission to increase diagnoses and improve quality of life. It’s our chance to bring the voice of all people affected by celiac disease and gluten sensitivity to the forefront, and we wish we could bring you all along to see the education in action!

What are you interested in learning about the trade shows that NFCA attends? We are interested in hearing your thoughts, so leave a comment below!

– Cheryl

 

July 12, 2013 at 2:53 pm Leave a comment

Gluten-Free BBQ Shrimp with Lime Marinade

The following guest post is from NFCA volunteer Annette Marie of Best Life Gluten-Free.

I love jumbo shrimp and this is an easy way to have them on the barbecue, with just a few steps beforehand.  After they’ve soaked up the marinade, just thread through skewers, or even place in one of those metal baskets for the grill.

The lime adds a great “tang”!

Gluten-Free BBQ Shrimp with Lime Marinade

Barbecue Shrimp with Lime Marinade: Finished Shrimp

Barbecue Shrimp with Lime Marinade

Ingredients: 

  • 1 lb. extra-jumbo shrimp (approx. 16 per lb.)
  • 1 lime (you need the grated zest from it and all of the juice squeezed from it)
  • ½ Tbsp. finely diced poblano pepper (You can freeze the remaining pepper for the future)
  • 3 Tbsp. light extra virgin olive oil
  • Pinch of fresh ground black pepper
  • Pinch of salt (Sea salt preferred)
  • 1 tsp. fresh parsley flakes, chopped in small pieces

Directions:

  1. First, peel and devein the shrimp, trying your best to leave the tails on.
  2. In a medium bowl combine all of the remaining ingredients, stirring well.  Add the shrimp and toss so they’re coated all around.
  3. Refrigerate for 30 minutes.
  4. Thread on skewers (or use a metal barbecue basket that will allow you to rotate the shrimp so all sides get cooked). If using wooden skewers, be sure to soak in water before threading, so they don’t burn on the grill.
  5. Place on a hot grill, and grill for about 3 minutes on each side, until turning pink.  A lovely side dish is a saffron rice, but whichever side dish you choose, these are great!

For tips on safe gluten-free grilling, check out the Gluten-Free Summer Safety Tips blog series from the National Foundation for Celiac Awareness.

Annette Marie

Annette Marie of Best Life Gluten-Free

Annette Marie of Best Life Gluten-Free

Annette is a native New Yorker, now living in New Jersey.  Since she was diagnosed with celiac disease well after the age of 50, Annette has made it her mission to raise awareness in the hopes that others won’t have to live for years with unexplained symptoms as she did.  Some of Annette’s recipes are inspired by traditional Italian recipes, but she adds other original gluten-free recipes to the mix.  Her “semi-homemade” and from “scratch” recipes are meant for busy families eating gluten-free.  For more of Annette’s gluten-free recipes, visit her blog at www.BestLifeGlutenFree.com.

July 10, 2013 at 1:57 pm Leave a comment

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