10 Easy Ways to Celebrate Celiac Awareness Day 2013

Raising awareness is a prime focus here at the National Foundation for Celiac Awareness (NFCA).  So, you can image that we have lots of ideas for raising celiac disease awareness every day, but especially on Friday, September 13 – Celiac Awareness Day.

Even if you are short on time, we have ideas that will have a big impact if we all work together.  Check out our 10 suggestions for raising celiac disease awareness:

Share the Celiac Disease Symptoms Checklist

Did you know 83% of the estimated 3 million Americans living with celiac disease are still undiagnosed or misdiagnosed?  You can help put these people on the path to diagnosis by sharing the Celiac Disease Symptoms Checklist.  Share it on social media or print it out and hand it to a friend, coworker or family member.

Provide your insight for parents of gluten-free kids.

Maybe your child has been diagnosed with celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’) for a while.  Perhaps you have a newly diagnosed child, but found a great trick for making things easier for them and yourself.  Either way, share your tip with NFCA for the Back to School Gluten-Free Tip series.  When you do, you’ll automatically be entered to win two mixed cases of Crunchmaster Cheezy & Grammy Crisps.  Grab all the details here.

Try a new recipe.

Cook something new for dinner this weekend.  Not only will this help you find additional recipe options, but if you share it with a friend, you’ll be proving just how delicious gluten-free can be.

Wear green.

Show your support by wearing green – green pants, shirt, shoes, nail polish, hair ribbon, socks, whatever!  If you’re feeling extra adventurous, upload a picture of you and your friends wearing green to NFCA’s Facebook page.  We’ll add it to our “Wear Green” photo album.

Help get the facts out there.

NFCA has a section for printable guides.  Consider printing a few, like the “What is Celiac Disease?” information sheet, and leave them at your doctor’s office or favorite local store.

Use a hashtag.

Wouldn’t it be cool if we got #celiacawareness trending on Twitter?  Tweet a celiac disease statistic to spread the word to your followers.  Feel free to give NFCA a shout out at @CeliacAwareness, too!

Donate or make a purchase in honor of Celiac Awareness Day.

At NFCA, we appreciate every donation we receive, whether it’s for $10 or $1,000, it truly makes a difference in our ability to provide free programs and services to people living with gluten-related disorders.  If you live in the Philadelphia area, consider attending our 10 Year Anniversary Celebration, a fundraiser for the organization.  If you can’t attend, you can always share the details with someone you know.

Some organizations, like Scent-Sations, make a donation to NFCA when one of their products are purchased.  More details can be found here.

Talk to your family about celiac disease testing.

Since celiac disease is a genetic autoimmune disease, meaning that it runs in families, it’s important for family members to get tested, whether they have symptoms or not.  Raise awareness in your family by sharing the facts.  We have some tools to help you get the conversation started.

Make sure you are up to date on the latest celiac disease news and research.

Researchers are working hard to better understand various aspects of celiac disease.  Visit NFCA’s Research News Feed to stay up to date on their findings and check in periodically with the Drug Development and Clinical Research page to see how you can get involved in advancing research.

The U.S. Food and Drug Administration (FDA) officially ruled on gluten-free food labeling.  Learn what it means for you and your family by registering for the free NFCA webinar, “Understanding the FDA’s Gluten-Free Labeling Rule: What You Need to Know.”  NFCA will also compile an informational sheet with key details from the webinar in the weeks following the live airing.  If you can’t make it, don’t worry!  Just register for the webinar and we’ll e-mail you a link to the archived version when it becomes available.

Share your ideas with NFCA.

These are just some of the many ways we can all work together to raise awareness.  Tell us how you’re celebrating!  Leave a comment on this blog, tweet us at @CeliacAwareness or drop us a line on our Facebook page.

Thanks for reading!  I can’t wait to hear everyone’s ideas.  Happy Celiac Awareness Day!

–          Alicia

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3 Tips for Coping with a Celiac Disease Diagnosis

Recently, I posted this question on the National Foundation for Celiac Awareness (NFCA) Facebook page: Do you agree that people with celiac disease or non-celiac gluten sensitivity (NCGS) can feel excluded from social life?  I posted the question after seeing an article on Celiac.com from a gluten-free college student who feels like celiac disease can isolate her from social activities.

I was blown away by the response on Facebook.  Obviously, this is a hot topic.  As of now, there are 81 comments in a thread that’s still active.  It’s so interesting to see all of these comments.  Some people adamantly disagree that celiac disease impacts their social life while others struggle to stay included in activities and events.  There were lots of parents concerned for their young children with celiac disease and the implications it has on them socially, both now and in the future.  It appears that many people believe the impact of a celiac disease diagnosis directly correlates with your attitude about the diagnosis.  Positive attitude, positive life with celiac disease.

No matter which side of the fence you fall on, there’s no denying that celiac disease changes your life once you receive the diagnosis.  Here are my top 3 tips for coping with a diagnosis of celiac disease or NCGS:

Read. Then read more.

There is no better way to navigate the gluten-free diet than to learn and understand all the ins and outs of the lifestyle.  The more you know, the more you can keep yourself in good health.  Learn what gluten is, how it affects the body in people with a gluten-related disorder, where gluten can hide and how to prevent cross-contamination.  It might sound intimidating at first, but NFCA is here to help.  Browse www.CeliacCentral.org to get started.

Get support.

Do you know one of the great things about being gluten-free?  The online community is amazing!  There are so many advocates on the internet who can help with everything from delicious gluten-free recipes to lifestyle tips.  NFCA is always around to answer questions and provide resources on Facebook, Twitter and the new Celiac Central community on Inspire.com.  Check them out to connect with other people who are living gluten-free.

Get more support.

The gluten-free diet can be confusing at first.  There are a lot of gluten-containing products out there that you might be surprised to find out actually have gluten in them.  (I was probably most surprised to find out soy sauce and some chicken broths have gluten.)  With so many things to look for on a product’s ingredient label, it can be really frustrating at first.  I highly recommend seeking support from a registered dietitian that fully understands the gluten-free diet.  They’ll help set you up with the tools and knowledge you need to get started.

If you don’t have access to a dietitian (or even if you do), check out the book Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case, RD.  It’s one of the most helpful gluten-free resources available.

Feel free to comment with some of the difficulties you’ve faced after the diagnosis and how you’ve learned to overcome them.  You’ll certainly be helping out the newly diagnosed reading this post!

– Alicia

Why This Gluten-Free Entrepreneur Caught Our Eye

Last week, I received an email from Benny Solomon, the founder of celiac and gluten-free resource website called OnTrackCeliac. The website is still in its infancy, but the goal is to include restaurant listings, product recommendations and other tools for living gluten-free. Nothing out of the ordinary, but here’s what caught my attention: Benny is only 14 years old.

After reading Benny’s email, I just had to find out how a teenager decided to shelve some of his social time and spend it developing a gluten-free resource.

NFCA: What inspired you to start OnTrackCeliac?

Benny Solomon: I was diagnosed with celiac disease in late 2009, and immediately switched to a completely gluten-free diet.  Within days, I noticed that many people knew what eating gluten-free was, but had no knowledge of cross-contamination.  I did not feel comfortable eating out and not knowing what was happening in the restaurant’s kitchen.  I realized that most places did not fully understand celiac disease.

For about a year and a half, I refused to go to more than about four different restaurants that I felt comfortable in, simply because I didn’t know which ones I could trust.  It was at this time that I realized that those with celiac needed a place to go to be sure that there was no need to worry.

Many websites have huge, outdated lists of restaurants with gluten-free menus.  If you were to go to about half of the restaurants on those lists, you would find that most of the staff has no familiarity with celiac.  People with celiac disease needed a place to find gluten-free options that were reliable and where they did not have to worry about cross-contamination.  In February of 2011, I started OnTrackCeliac to satisfy this need.

NFCA: Why did you decide to do a restaurant and food finder?

BS: I wanted to work with restaurants and foods since they are the base of starting a gluten-free diet.  My plan was to develop more resources around these two categories over time.

This was not my first time making a website or app, but it was the first time that I seriously took on a technology-related task.  For a few years I worked on a few iPhone games, and later I ran a small website that featured “the best videos on YouTube.”  OnTrackCeliac truly felt like an idea where I could apply my computer experience to something I am passionate about.

NFCA: How do you choose the restaurants that you feature?

BS: My policy is that any restaurant that is safe for people with celiac disease should be listed on OnTrackCeliac.  I don’t exclude any restaurants for quality of the food, or any other reasons.  I try to provide as many options for restaurants as possible, as there are very few that have a strong knowledge of celiac.  Although the main focus is on gluten-free safety, I will be starting a new star system, so that restaurants that have exceptional food and go above and beyond expectations will be recognized.

NFCA: How do you create your list of gluten-free foods on the website?

BS: When creating a list of gluten-free foods, I generally start by exploring the company’s website.  I try and ask myself if the company looks reliable, and if they are promoting gluten-free foods.  If they actively publish a list of gluten-free foods, that becomes a strong indicator of the company’s reliability.  If not, I generally call companies to find out if they have a list of gluten-free foods, but do not publish it online.

The company must show significant knowledge to pass the test and make it onto the site, and if they do not have any apparent efforts for showing which products have gluten and which do not, they do not make the cut.

NFCA: How do you juggle this project with school and other activities?

BS: Working OnTrackCeliac development into my schedule is certainly difficult.  I generally don’t work on the site every day (after homework is done); instead, I find that I work best when a large chunk of time is available.  On a break from school, for example, I sometimes sit down and work on the website for 3-4 hours a day.  I do give OnTrackCeliac a quick check every day though, just to make sure nothing has gone wrong, and that everything is working smoothly.

NFCA: Some people get discouraged about having to live gluten-free. You seem to have a passion for it. How do you stay so positive?

BS: I have mixed feelings towards having celiac disease.  At times, I like having it, because it gives me something that I feel is unique to me in the way that I deal with it. At other times, I do experience frustration, such as on trips and when I go to a restaurant at a last minute’s notice.  The way that I stay so positive is by knowing that OnTrackCeliac helps other people.  By encouraging people to stay informed about celiac, we can only encourage progress for the future.

For the first year I worried about having celiac, but realized that worrying wasn’t getting me anywhere.  By educating others, I hope that someday celiac will not be a burden at all on my lifestyle, and I am motivated to teach others to have the same outlook on eating gluten-free.

NFCA: What advice do you have for teens who feel tempted to cheat on their gluten-free diet?

BS: To any teens with celiac that want to cheat, I would say it’s simply not worth it.  After having spent the first part of my life eating gluten without knowledge of celiac, I can assure anyone that the best substitutes for gluten-free are just as good as regular food.  The trick is you have to find the best (I cannot stress that enough) brands. For example, there are hundreds of gluten-free breads out there, but in my opinion, only about two of the brands taste like “normal.”

Cheating might not initially seem like a big deal, but the long-term consequences are extremely serious.  There is nothing to gain from eating gluten.  Set a goal for yourself to not eat gluten, and reward yourself when you reach points along the timeline (but not with eating gluten!).  If you ever need advice on the best foods, check out OnTrackCeliac’s food page!

NFCA: Is OnTrackCeliac something you’d like to turn into a career?

BS: At this point in development, I hope for OnTrackCeliac to become even more of a resource for people with celiac disease.  I would like my career to be somewhere along the lines of what my website strives to accomplish, but I just can’t predict what lies ahead.  I hope that OnTrackCeliac has a long future, and I want people to have the mindset that it encourages:  To embrace celiac, find reliable ways to live your gluten-free life, and educate others.