Cooking with Oonagh
HEALTH & WELLNESS
Survey to Understand Symptoms in Kids & Teens
Join NFCA’s Patient & Family Advisory Council
FOOD & LIFESTYLE
Allergic Living Sneak Peek
NFCA Reaches Grant Challenge Goal
Baking Without Gluten
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Navigating the Challenges of the Holiday Season
Celiac disease uniquely requires patients to manage their own treatment. So, we have no option but to get good at managing our disease ourselves. We become expert label readers, waiter interrogators, inspectors, professional-level party wet blankets, all in the name of taking care of our health. When we aren’t taken seriously and our needs are not understood, there’s real potential to drag us down into anger, depression, and just throwing in the towel.
The holiday season brings these challenges to the forefront. Festive parties, family gatherings, workplace celebrations, school events – all are food-centric, and it’s a bit of a minefield to navigate the offerings. For self-protection, we can end up doing all the cooking just so that we know what went into the food and beverages. We have become very resilient. We are the poster children of an invisible illness, aiding and abetting in our own invisibility by coping so well. Many of us don’t even know how accustomed we’ve become to making do, taking 100% responsibility for managing our illness. Because of the fad status of the gluten-free diet, at times we feel a little beaten down and ridiculed because our treatment is a target of comedians, Twitter trolls and even TV commercials.
But, the joy of the season is too strong of a pull to wallow. We never should have to sacrifice holiday joy and experiences because we live with a serious genetic autoimmune disease. I have been diagnosed with celiac disease for over 20 years, so I have decades of experience to offer when it comes to the holiday season. I hope these tips help you move through your celebrations in good spirits!
As Thanksgiving nears, recognize that you are one of the lucky ones who actually knows that you have to avoid gluten. 83% of people with celiac disease are undiagnosed or misdiagnosed. They are going through their holidays as usual, maybe feeling terrible, and definitely leaving themselves vulnerable to long-term consequences of undiagnosed celiac disease. The short-term disappointment of missing out on the traditional stuffing will be far outweighed by the opportunity to live longer, better, and celebrating more holidays as a result. Now that is something to rejoice about.
To a GREAT holiday season,
By Chef Oonagh Williams
This was devoured at a girls’ night in, with wheat eaters coming back for seconds. Make it with gluten-free ginger snaps or other cookies in a spring form pan or 9″ pie plate finished with cream, caramel sauce, and caramelized nuts for a no bake Thanksgiving treat.
About Chef Oonagh Williams
Gluten-free Chef Oonagh Williams has a Culinary Arts degree and always cooked real food even, before a family diagnosis of celiac disease. You can find Chef Oonagh Williams at Gluten Free Cooking with Oonagh on Facebook. She will be speaking at the 7th Biennial Gluten Free Education Conference in Fargo, North Dakota in November. Contact her for advice on food for a gluten or allergen-free life. Get her ‘Delicious Gluten Free Cooking’ ebook, just in time for the holidays, with gluten-free popovers, English Trifle, Tiramisu and more.
Email: [email protected].
Researchers need to develop the right tools to best understand what it’s like for children and adolescents to live with celiac disease and learn about the symptoms they experience. Researchers also need to understand the experiences of younger kids as reported by their parents.
NFCA is working with AbbVie and ICON Clinical Research to get children who have been diagnosed by a doctor with celiac disease involved in a study that could lead to the development of such tools. Kids and teens must be between 8 and 17 years old to be considered for participation.
This research study includes a one-time, 60 minute, in-person interview with kids and teens diagnosed with celiac disease. For children between 8 and 10 years old, a parent must also participate.
The survey questionnaire closes on November 11, 2015. If you qualify to participate and complete the interview process, you will receive a $100 pre-paid gift card.
Wh at are FODMAPs and What’s the Connection to Celiac Disease and Gluten Sensitivity?
Q. What does FODMAPs stand for?
A. The term FODMAPs is an acronym for: F ermentable, O ligosaccharides, D isaccharides, M onosaccharides A nd P olyols.
FODMAPs are short chain carbohydrates that may be poorly absorbed in the small intestine. This can cause more water to be pulled into the colon and can also rapidly ferment, or be broken down, by bacteria in the bowel. This can cause symptoms like increased gas, bloating, constipation/diarrhea and pain. These symptoms are part of the diagnosis of Irritable Bowel Syndrome (IBS) and also overlap with celiac disease symptoms
NFCA is excited to announce that applications for our 2016 Patient and Family Advisory Council are now open!
Last year, NFCA launched our inaugural Patient Advisory Council. The first of its kind for the celiac disease field, this group has directly helped to:
Now, we are ready for another successful year and are looking for new members to join the Council. We are also excited to announce a slight name change to the Council: Patient and Family Advisory Council, which better reflects the membership and scope of NFCA’s community.
We will be accepting applications through Monday, November 30, 2015. If you are interested in joining, you will need to complete both steps of the application process:
Not sure if you’re interested? Here are a few reasons you may want to apply:
Top 5 Reasons to Join NFCA’s Patient and Family Advisory Council
You can grab more details about NFCA’s Patient and Family Advisory Council and the application process here. While the online application questionnaire is available in PDF format for review to help you prepare in advance, all responses must be submitted electronically. This questionnaire can only be submitted once.
By Lisa Fitterman
At six feet, four inches, a powerful 230-pound forward on his high school basketball team and a star student on the cusp of college, Eamon Murphy is a far cry from the little boy Allergic Living first wrote about back in 2010.
“Sometimes, I look at photos of me from when I was small and I think, ‘That was me? I think of how far I’ve come, how much I’ve grown up,” says the easygoing 18-year-old from Chappaqua, New York.
When we first met Eamon and his mom, Lisa Murphy, she related how her son had started out as an elfin toddler with a tendency to slide into disturbing trances, and whose bones seemed to break like twigs.
By NFCA Director of Development Kimberly Yost Moyer
NFCA had quite the rally at the end of our fiscal year, which ended on October 31, 2015. We were so lucky to have two anonymous donors step forward with the offer of challenging the community to match their gifts. Our first challenge grant for $10,000 came to us in September and the donor offered not only to match each gift dollar for dollar but for every new donor that made a gift, they would match that gift two dollars for each dollar donated!
The support from you, our community, was immediate and impressive. Once we reached the $10,000 goal, a new donor stepped forward at the end of October to push NFCA across the finish line with a $15,000 challenge grant. They too were generous enough to agree to the same terms as our original donor and matched new donors two to one.
Thank you to all of our donors that helped NFCA close our fund year with the strongest online support we have ever received and for being a part of an effort to not leave one penny on the table! Thank you to our very generous donors that believe in NFCA and the work we do each day. It is only together that we can elicit change and move toward a future without celiac disease.
It is no secret that the holiday season tends to cause some anxiety within the celiac disease community. When the focus is on food, how can you not feel a little apprehensive about the festivities?
From talking with our community regularly, we know what often happens during the holiday season. So, we took these common scenarios and asked our blogger friends and NFCA staff members to offer their advice on how to handle different situations.
Get advice from those who’ve been there!