Archive for January, 2012
I wasn’t thrilled when I woke up to 3 inches of snow and slush last Saturday morning. I was expected at Whole Foods on the Upper West Side of New York City by noon-ish, and the drive from Philly just got a lot more treacherous.
But, as Nancy would say, “Press on!” And so I did. Through the slush. Past the snow plows. Around the cars parked snuggly in their spots.
I was headed to Whole Foods for the Gluten-Free Education Fair, an afternoon event that capped off a week’s worth of gluten-free samplings and specials. The Fair was organized by Erin Smith, one of our top blogger friends and organizer of the NYC Celiac Disease Meetup Group, so I couldn’t let her down.
Well – no surprise here – I made it. And despite the unsightly weather, we had a good turnout. NFCA’s table was placed right at the door, a chilly but prime spot for grabbing customers as they entered. Best of all, I was sandwiched between cookbook author Annalise Roberts and the team from Dr. Schar USA, both of whom brought gluten-free samples. As we all know, everyone loves free samples, and while the customers waited in line, I talked to them about celiac disease and gluten sensitivity.
For the most part, everyone had heard about the gluten-free diet (though I did get a few “So, what is gluten?” inquiries). Many customers had also heard of celiac disease, and those who hadn’t were astonished to learn how many symptoms it manifested. There were customers who had celiac disease, others who had a friend with gluten sensitivity, and, of course, there were the few that said “Oh, I kind of eat gluten-free. You know, it’s just healthier.”
The Gluten-Free Education Fair truly showed the breadth of people who are eating gluten-free, and how comfortable they are with the diet. A man diagnosed celiac for 10 years told me how much easier it’s gotten. A woman with a different autoimmune disease said she’s trying a gluten-free diet to see if it helps her symptoms. An entire family went gluten-free on behalf of one celiac child, and they’re still discovering new foods.
One customer in particular had been diagnosed with celiac less than 1 year ago. She tried each sample and collected information like a kid in a candy store. If there were an award for “Most Stoked About a Gluten-Free Cracker,” she would win it.
Fortunately for her, there were plenty more foods to try. Glow Gluten Free and Kettle Cuisine, two of NFCA’s GREAT Business Association members, were handing out samples in the store aisles. Posh Pop Bake Shop and Free Bread, Inc. were also among the vendors at the fair.
A special thank you to Erin and Whole Foods for organizing this great event. We hope this is the first of many!
[As you know, the National Foundation for Celiac Awareness staff members are big Phillies fans. So when one of our volunteers, Nadina Fraimow, told us she shared the same passion for sports, wellness and all things Phillies, we had to get her on board. Nadina will be sharing her gluten-free experiences as she follows the Phillies year-round.]
A Phightin’ to Be Gluten-Free Blog
Be-Lee-ve it — spring training is less than one month away! As Phillies catchers and pitchers prepare for Clearwater, FL, management continues to play “Moneyball” with players on the home field. Last month, the latest buzz to reach media channels followed the potential deal to re-sign shortstop Jimmy Rollins.
The Phillies did go Rollin’ into the holiday season with him on the team and signed to a 3-year contract. Next to bat, Cole Hamels and Wilson Valdez both signed a 1-year contract with the Phillies. If the destination for Rollins, Hamels and Valdez is a Phightin’ Phils ticket to the World Series, then their journey starts now.
This week, two sports legends—Andy Musser and Joe Paterno died. To quote the latter, Paterno always said, “Believe deep down in your heart that you’re destined to do great things.”
My family team is Phightin’ strong, cheerin’ loud and Be-lee-vin’ in the gluten-free community, each other and ourselves. When we get together, there is always a food adventure involving new recipes, ingredients, and foods from restaurants and grocers. Our All-Star trifecta in the kitchen is quite the team to beat during pre-spring training!
A Grand Slam, gluten-free adventure can be found in Ardmore, PA, a Philadelphia suburb on the stretch known as the Main Line. This week, our local Trader Joe’s is hosting a gluten-free food tasting station. I highly recommend a must-try lunch option, the gluten-free super spinach salad (contains quinoa, carrots, cranberries, chickpeas, edamame, pumpkin seeds, and a ginger miso dressing) for an All-Star energy boost. My change-up is to be creative and introduce additional ingredients to existing recipes. To the salad, I added avocado for texture, spicy falafel chips for flavor and tuna for protein.
Rounding in the bases, Di Bruno Brothers is now carrying a full line of gluten-free focaccia, breads and rolls from Lancaster’s Amaranth Bakery and gluten-free deli meats, including my favorite, Boar’s Head Turkey Pastrami. Each week, gluten-free products are added to Di Bruno Brothers diverse selection of gourmet foods.
Sliding into home plate, Sushi Sei at the Ardmore Farmers Market safely prepares special orders of gluten-free sushi and sells gluten-free ginger dressing and soy sauce. The sushi is artistically rolled with the freshest fish and vegetables!
Stay tuned for upcoming restaurant and product reviews to enjoy during the baseball off-season. Clearwater, FL—here we come!
Nadina Fraimow began volunteering with the National Foundation for Celiac Awareness (NFCA) in April 2011, and will be happy to answer messages addressed to her at the email@example.com email account. Nadina learned that she has gluten sensitivity in February 2011, and is grateful for having been diagnosed promptly and correctly by a knowledgeable gastroenterologist. She enjoys running, shopping for gluten-free sweets and creating recipes that are both tasty and healthy. Nadina is a Marketing and Communications professional living and working in Philadelphia. Nadina is also a proud Penn State alumna and an avid fan of the Phillies.
[A new semester means new interns at NFCA! We have an enthusiastic group, so we asked them to share their personal stories and what they hope to accomplish while working with NFCA. First up is Rhiannon.]
Hi everyone. My name is Rhiannon Brown, and I’m spending this semester interning for the National Foundation for Celiac Awareness (NFCA). Specifically, I will be working with Director of Gluten-Free Industry Initiatives Beckee Moreland on NFCA’s Gluten-Free Resource Education and Awareness Training (GREAT) programs.
I’ve always had an interest in foodservice, especially working with customers. I love seeing people smiling around a table with wonderful food! But being a waitress for the rest of my life didn’t sound appealing, either. I wanted to move ahead in the organizat
ions I worked for, and I realized a Foodservice Management degree might get me to where I want to be. So, I returned to my alma mater, Southeast Community College (SCC), to pursue a degree in exactly that!
I have worked diligently in school, achieving certifications from the National Restaurant Association in Food Protection Management (Manager Level Food Handlers Permit, Lancaster County, Nebraska), Inventory and Purchasing, Controlling Foodservice Costs, and Hospitality & Restaurant Management. Through all of this, I was struggling with my own health issues. I had felt sick my entire life, was told I was depressed and had a hysterectomy in my mid-30s. I HAD to figure out what was wrong with me!
Luckily, I came up NFCA’s Celiac Disease Symptoms Checklist. I spent hundreds of hours doing research, reading about the digestive system, referencing and cross-referencing information that I found. Everything pointed to the fact that I may be gluten intolerant. I didn’t have health insurance, and as a student and single mom, I couldn’t get to a doctor. That is when I turned to a gluten-free diet.
I’ve felt healthier than I ever did in my 33 years, but, I realize that every single day is a battle. I know I wouldn’t want to fight a battle on my own, so why would anyone else? I made it my mission to make people aware. I have joined every mailing list and group I’ve found that relates to gluten intolerance. I talk about it with everyone I come across. All of my school projects are geared around awareness!
The one group that has been the most helpful in my battle has been NFCA. So, as you can imagine, when I found out that I was going to have the opportunity to meet someone from NFCA, I was beyond elated! In December 2011, I was in a Culinary Nutrition class at SCC that invited Beckee to speak. Her visit to SCC turned out to be the GREATest opportunity that a gal in my situation could have asked for! I stayed after class for a few moments to speak one-on-one with Beckee. She informed me of the internship opportunity and invited me to apply for it. I graciously accepted the invitation, applied, interviewed, and was awarded the internship. I have been walking on cloud 9 since the day I met Beckee! Not only because of the internship, but, because I found a local advocate to turn to when I am stumped, when I have news to share about the celiac community, or when I have ideas that could help the community! I am extremely excited for the prospects that this placement will bring!
This practicum has allowed me to complete gluten-free training through NFCA’s GREAT Kitchens program. One of my goals to open a dedicated gluten-free bakery and deli, and this training has expanded my education and will increase my credibility with customers. The program even includes training tools for the staff I hire and a door decal to place on my business to let people know they can find safe gluten-free food at my deli.
I hope that I can be a catalyst for NFCA’s GREAT Kitchens program. I hope that I am able to make a difference in others’ lives the same way NFCA has made a difference in mine. I hope to prove myself as a valuable asset to the organization, enough so to possibly have the opportunity to become a permanent asset!
Read more about Rhiannon’s diagnosis journey here: Rhiannon’s Story
Some days, it seems that surveys are everywhere. We are surrounded by a knowledge gap that surveys are meant to fill allowing all of us to move ahead to a better world. Some seem immensely trivial and others of grave importance.
Over the past few weeks, I have been involved in the world of surveys. Specifically, I have been working on a survey targeting anyone and everyone who is gluten-free. The point is to find out what experiences the survey taker has had with medication. By that, I mean medication of all sorts—prescription, over-the-counter, supplements, the works.
Yes, this survey is part of NFCA’s work on the U.S. Food and Drug Administration (FDA) grant to study Gluten in Medications. We have written about this study on our CeliacCentral.org website, in our newsletter and more.
Right now, we are engaged in making sure that the distribution of this survey is as broad as possible so that we certainly gather as much insight as we can. The more responses we get, the more information we will have and, therefore, the more drugs we can test for gluten content and the more targeted that testing can be to reap the best, most noteworthy and effective results.
And, yes, this survey falls into the “gravely important” category.
So, I have been poring over lists of groups that are good candidates to distribute the survey. The NFCA staff has been sending out email notices about the survey like crazy and, then, regrouping to expand and improve our communications plan.
We know how important this research is to all who are gluten-free and who want to be certain that, in the process of trying to get well or stay healthy, they are not sideswiped into illness inadvertently. Whether someone takes one pill a day or 16, that individual doesn’t know how much gluten, if any, she is absorbing.
We also know that pharmacists are eager to help their patients. They need to know what is in the medication they are dispensing. People ask them questions; they want to know the answers. NFCA’s GREAT Pharmacists online training program is one way that we are moving the ball along that learning curve. This survey and the research that comes out of it will advance the Gluten in Medications program in a positive fashion.
So, back to the lists. This is a one-in-a-million chance to get it right!
Dear Friends of NFCA,
I get asked a lot, How do you do it all? How do you run an organization, take care of your family, cook, and live a balanced life without pulling out your hair? The answer is that I don’t do it all. I make mistakes, but I try to learn from my mistakes. And there are times when the ball does get dropped.
Our family recently moved. And, let me tell you, our holiday was a bit chaotic. I didn’t get any exercise for weeks on end. But my wonderful staff picked up the pieces in the office. Thank you Cheryl, Jennifer, Nancy, Kristin, Whitney, Sue and Beckee.
I wanted to write a holiday blog post, but I honestly could not get my act together. On the bright side, I knew that it wasn’t the end of the world and that you would all understand. No one is perfect. We all do the best that we can, and my family needed my time and attention. And I needed to unpack and organize my belongings. Thank you, team NFCA!
Here at the National Foundation for Celiac Awareness (NFCA), I am frequently the recipient of letters and information requests from individuals in prison. Many of these individuals have been diagnosed with the disease while serving time, and have almost zero access to resources on celiac disease and the gluten-free diet.
This week, I received a desperate plea from a man incarcerated in California. Diagnosed just weeks ago, he expressed a need for materials that would help both him, along with the prison medical and foodservice staff, become better educated on the condition and diet. As our organization’s mission is to empower and educate ALL individuals about celiac disease and the gluten-free diet by providing free, comprehensive resources for patients – I was more than happy to send a him an information packet.
I frequently take great care when putting together these packets for inmates. While I don’t excuse whatever circumstances led them prison (and believe me, I’ve Googled them), I am sympathetic to what I consider to be an incredibly vulnerable population. It’s challenging enough to receive a diagnosis and manage a gluten-free diet in our society, I cannot imagine being able to accomplish this in an environment where you truly have ZERO control over your health and diet. I am touched and saddened by each personal story I read, and even more touched by the DOZENS of thank you notes I’ve received from prisoners after NFCA’s resources arrive at their cells.
In light of my interest and budding passion for this specific celiac population, I am inspired to further investigate what life is like for prison patients. I look forward to sharing my findings with you in an upcoming newsletter article. I hope you’ll also look forward to reading what I think will be an incredibly enlightening and interesting piece, so stay tuned!