HEALTH & WELLNESS
Allergic Living Sneak Peek
Changing the Conversation
NEWS & UPDATES
CHAT WITH NFCA:
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 seemedeasier. 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,
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
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.
By Gwen Smith
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.
Photo credit: ThinkStock and Allergic Living
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 rightconversation with your relatives. Talk to them. Tell them the facts. Urge them to test.
Don’t forget to download the Dos and Don’tsguide 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!
There is a lot more to the Seriously, Celiac Diseasecampaign 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,