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June 2015                                                                                                                  Subscribe now

National Foundation for Celiac Awareness: Monthly eNewsletter

 

Note from Alice

COLUMNS
Cooking with Oonagh

HEALTH & WELLNESS

Allergic Living Sneak Peek
Celiac disease & reproductive health

Dos & Don'ts for Talking to Your Family
Video!

FOOD/LIFESTYLE

Behind-the-Scenes of Seriously, Celiac Disease

Changing the Conversation
New video series!

Resource Spotlight
Reading food labels

Camp Tecumseh
Winners of GREAT training

NEWS & UPDATES

What's Hot
In the Headlines & On the Shelves

Contact:
Alicia Carango
Web & Social Media Manager
acarango@celiaccentral.org

CHAT WITH NFCA:

 

 

NFCA President and CEO Alice BastNote from Alice

Can You Imagine Life Beyond Celiac Disease?

NFCA President and CEO

The celiac disease community has different points of view on the gluten-free diet.   There are those who completely embrace the gluten-free diet and those who would do anything to go back to a gluten-containing diet.  Of course, there are also those who fall somewhere in the middle of the spectrum. 

Back in April, the National Foundation for Celiac Awareness (NFCA) hosted its 2015 Research Summit, which brought together people living with celiac disease and experts from both inside and outside the field. Discussion groups at the Summit focused on a variety of topics, especially in better defining the burden of celiac disease. As you might have guessed, those with celiac disease had different opinions on this topic.  Some did not feel celiac disease was a burden in their lives, but most did.

As conversation ramped up, people debated what "burden" means and how it factors into celiac disease.  By the end of the Summit, something extremely interesting happened. Those who originally thought managing celiac disease was no big deal changed their minds.

One attendee summed it up perfectly. She said, “I never realized how angry I am about managing the gluten-free diet and how it seeps into every aspect of my life.” In the end, she said that she really just became familiar with managing the gluten-free diet, so it seemed easier. Getting better with eating gluten-free didn’t actually lighten the impact on her personal life.

In May, NFCA team members traveled to Washington, DC for Digestive Disease Week (DDW). At DDW, Dr. Stefano Guandalini of the University of Chicago Celiac Center presented on a different type of burden: the economic impact of celiac disease.

It’s no secret that a gluten-free diet can become expensive. But, Dr. Guandalini’s study looked at the impact on healthcare expenses to determine the costs of uncontrolled versus controlled celiac disease – an area rarely studied. Essentially, the study showed that people with controlled celiac disease have 2.5 times higher healthcare costs than those without it. Those with uncontrolled celiac disease have a slightly higher rate of costs at 2.8 times the normal claims rate. The researchers defined uncontrolled celiac disease as having more than one celiac disease-related hospitalization, emergency department or outpatient visit or a dietitian visit during the period in which the study was conducted. NFCA will cover the study in more detail once the data is formally published.

Between the social and economic factors, it’s easy to see that living with this serious genetic autoimmune disease is a huge burden. NFCA is working hand-in-hand with researchers to help your voice be heard so we can make more progress in making life with celiac disease better. I encourage you to sign up for our newly renamed resource – Beyond CeliacTM: NFCA’s Research Opt-In – so that you can stay in the loop on what’s happening in research, how it will impact your life and what you can do to help. 

We’ve renamed the opt-in because we believe that research paves the way for a life beyond a diagnosis and the burdens this disease can bring. I hope that you’ll sign up if you haven't already.

To our GREAT health,

Alice

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Crunchmaster gluten-free

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Cooking with Oonagh

GLUTEN-FREE ROASTED GARLIC CHEESE BREAD

gluten-free roasted garlic cheese bread
I've spread this mix on toasted/broiled gluten-free bread, English muffins, bagels, then finished it under the broiler. Really yummy on all, but definitely messy from the butter/oil dripping down your fingers – who cares!

 

CAPE TOWN SALMON WITH SPINACH, SUNDRIED TOMATO AND FETA CHEESE

Capetown Salmon I had this for lunch at Cape Town Fish Market in May 2015, sitting in the sunshine on the pier outside the Victoria and Alfred Mall in Cape Town, South Africa.  We had just come off the ferry from visiting Robben Island where Nelson Mandela was imprisoned.

My lunch actually was two pieces of grilled hake sandwiching spinach, sundried tomato and feta cheese, with a prawn (shrimp) and olive tapenade.  They used fresh spinach, but I like to keep a bag of frozen chopped spinach in the freezer. I added some cream and left out the olive tapenade – far too salty for me. This sauce would go well with probably any fish or chicken breast or pork. Add different herbs, some chili spice.

About Chef Oonagh Williams

Chef Oonagh Williams

Like' Chef Oonagh on Gluten Free Cooking with Oonagh on Facebook.  Keep up with her television appearances, radio, talks to both celiac disease groups and non-gluten-free diet groups.  Consult with her by Skype.

Come Meet Chef Oonagh when she speaks at the GFAF expo in Worcester MA on July 25 and at the GIG Conference in North Dakota on November 7. Chef Oonagh also does Corporate Lunch ‘n’ Learns and speaks at celiac disease conferences. Read her article on visiting Atlanta GA, tourism and gluten free options in the current issue of New England Celiac Organization magazine.

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Enjoy Life. Eat Friendly.


Allergic Living Sneak Peek: Celiac Disease Linked to Higher Rate of Miscarriage and Premature Birth

By Gwen SmithWoman Speaking with Her Doctor

A study of pregnancy experiences finds that women with celiac disease are significantly more likely to miscarry or give birth prematurely than other women.

The study was conducted through a lengthy online survey that involved 970 women: 329 of whom had tested positive by biopsy for celiac disease, and a control group of 641 women without the disease.

While about three-quarters of each group had become pregnant at least once, the authors found the rate of miscarriage to be significantly higher in the celiac disease group – slightly more than 50 percent compared to 40 percent among participants without the disease.

Continue reading.

Photo credit: ThinkStock and Allergic Living

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Lucy's Gluten-Free Browni Crisp


Dos and Don’ts for Talking to Your Family about Celiac Disease Screening

There is a right way and wrong way to talk to your family members about their genetic risk for celiac disease. NFCA developed a research-tested approach to having this important conversation through a project that included both people diagnosed with celiac disease and their untested relatives.

Watch our newest video to learn how to have the right conversation with your relatives. Talk to them. Tell them the facts. Urge them to test.

Don’t forget to download the Dos and Don’ts guide for even more research-tested tips! And, make sure your conversation with family members about their celiac disease risk is done in person, not online. Read more about it in the guide!

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Behind the Scenes of Seriously, Celiac Disease

Shot of the cast and crew at the filming of Seriously, Celiac Disease

There is a lot more to the Seriously, Celiac Disease campaign than a video. NFCA worked on a research project which drove the video content. And, since this video was created just for the celiac disease community, we made sure that some of the people involved in the video were personally impacted by the genetic autoimmune disease.

Come get a behind-the-scenes look at the filming,
including Q&As with the crew and photos from the shoot.

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Making Change for the Celiac Disease Community

Changing the Conversation

With the gluten-free diet exploding as a fad, celiac disease often gets left out of the conversation. That can have a negative impact on people living with celiac disease.  Throughout June, NFCA will be changing the conversations we have with each other and with those who serve us food to ensure that celiac disease is taken seriously. We hope that you will join us in making these important changes!

Watch our first video on why we need to work together to make a change to get celiac disease out in front of the gluten-free diet. We’ll be releasing more videos and how-to guides throughout the month. Stay tuned!

www.CeliacCentral.org/ChangingtheConversation

Be sure to enter the Blue Diamond Gluten-Free Giveaway through the link above!

Bue Diamond Almonds
NFCA thanks Blue Diamond for sponsoring this campaign!

 

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Resource Spotlight: NFCA’s Label Reading Guide

Let’s face it. Ingredients on food labels can be downright confusing. It can certainly be stressful trying to decipher these labels when your health depends on what’s inside a product. NFCA is here to help!

Download our free Reading Labels Guide for step-by-step instructions on how to read a food label and identify gluten-containing ingredients.

certified gluten-free
Certified gluten-free products make label reading easier. Be sure to keep an eye out for products certified by the NFCA-endorsed Gluten-Free Certification Program (GFCP). Learn more about the GFCP here and look for our logo on products on your local grocery store shelves.

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Congratulations, Camp Tecumseh!

Camp Tecumseh Campers

Back in March, members of the NFCA community nominated their favorite camps for a chance to win free gluten-free training through our GREAT Schools, Colleges and Camps program. This online training course teaches everything about safe gluten-free food preparation from ingredient sourcing to serving and handling the food.

We are excited to announce that the winner has been selected! Congratulations to Camp Tecumseh in Brookston, Indiana. They are the lucky recipients of free training through the GREAT Schools, Colleges and Camps program.

You can learn more about NFCA’s GREAT training programs at www.CeliacCentral.org/greatkitchens.
 

Photo credit: Camp Tecumseh Facebook Page

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What's Hot

In the Headlines:

On the Shelves:

Tell us about your gluten-free product finds on Facebook every Sunday night at 7:45 p.m. EST!  Missed a post? Check out our trending product updates on the Gluten-Free Hot Products blog.

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