Posts tagged ‘Programs’

5 Things I Learned from NFCA’s Getting Started Guide

One of NFCA’s most valuable resources is our Getting Started Guide – a 24-page booklet filled with information for those newly diagnosed with celiac disease or non-celiac gluten sensitivity. It lists gluten-free alternatives, sources of hidden gluten, tips for cooking and dining out, and contact information for support groups and celiac disease centers.

When I started at NFCA, I didn’t know much about celiac disease. Here are 5 things I learned thanks to the Getting Started Guide.

1. Take baby steps.

The gluten-free diet can seem overwhelming, especially when you try to jump in with an overly complex recipe. Instead, start with a few basics. As the Guide says:

“A first and simple step is to look for dishes that need very little customization, perhaps just the substitution of one gluten-free ingredient for one that is not gluten-free. For example, make macaroni and cheese or baked ziti with rice, corn, or lentil pasta, or prepare enchiladas with corn tortillas instead of the wheat flour variety.”

NFCA Getting Started Guide

NFCA’s Getting Started Guide

2. Don’t skip out on your doctor.

Follow-up visits are critical to ensure you are healing and not accidentally ingesting gluten.

“To make sure your gluten-free diet is successful, schedule annual exams and take the celiac antibody test when directed by your doctor. If your blood test comes back normal, it will confirm that you are maintaining a completely gluten-free diet,” the Guide says.

3. Cup for Cup conversions.

Baking with gluten-free flours isn’t as easy as using a box mix (which, thankfully, include gluten-free versions). Fortunately, the Getting Started Guide has a cheat sheet. Page 12 lists conversions for replacing wheat flour with a gluten-free alternative. For example, use ½ cup of almond flour for every 1 cup of wheat flour. Sorghum flour, on the other hand, swaps 1-for-1.

4. Those “weird” health issues could be related to celiac.

Dental enamel defects. Pale mouth sores. Fatigue. They don’t always get the spotlight, but they are signs of celiac disease. The Guide has an abbreviated list of symptoms (there are more than 300, after all). You may find yourself having an “A-ha” moment after reading them over.

5. Generic and brand name drugs can differ.

Yes, but how is this relevant. Well, there are things called excipients (binders) used in medications that can sometimes contain gluten. In some cases, a brand-name drug may be gluten-free, but its generic counterpart may not be. So, it’s important to always check with the manufacturer to ensure a medication is gluten-free. Find more details in the Getting Started Guide.

Where can you find this Getting Started Guide? It’s available for download 24/7 on NFCA’s Printable Guides page. Just scroll to the section called Restoring Health. In fact, all of the Printable Guides you find on that page can be helpful in your gluten-free lifestyle – and they’re all free!

Is there a topic you’d like us to cover in a Printable Guide? Leave your suggestions in the comments below.

– Cheryl

May 4, 2012 at 10:51 am Leave a comment

Gluten-Free on the Road: GREAT Kitchens in Michigan and Minnesota

Every day, new restaurants are going online and completing NFCA’s GREAT Kitchens training and educating their staff about serving gluten-free to people who depend on verified ingredients, gluten-free protocol, and a celiac savvy waitstaff. They’re learning why it’s important to greet special diet guests with confidence and know how to answer questions to build trust. Owners and managers across the country are hearing about GREAT Kitchens at their local restaurant association and American Chef Federation meetings, through U.S. Foods distributors, and of course, the celiac community.  Thanks for your help!

GREAT training is better than “good enough,” and I’ve had the pleasure to see firsthand the result of GREAT training while traveling for business and pleasure. I can’t tell you how excited I get when I know I’m going to a city where GREAT Kitchens exist, and I can be a secret diner to check out the effects of GREAT training.  There are hints of GREATness that stand out in GREAT Kitchens. Check out some of my travel spots and their outstanding service:

W.O.W. – East Lansing, MI

I ended up in East Lansing, MI, in October 2010, to speak at a local health food store for their Celiac Awareness campaign. On my way back to Detroit, where I would be speaking the next day, I stopped in to meet Steve Pollard at Guido’s pizza parlor in Okemos, MI, just outside of East Lansing. Steve was one of our first GREAT Kitchens, and his staff is well-trained in gluten-free protocol.

Gluten-Free Pizza at Guido's in Michigan

Gluten-free and amazing!

The pizza? Well, it is simply amazing. Soft, tender crust handmade crust with perfectly placed toppings made me teary to think that Steve was serving these sweet pies daily to the lucky East Lansing folks.  Now almost 18 months later, Steve’s moved his gluten-free operation next door. W.O. W. ( With Out Wheat) deli and bakery has fantastic gluten-free breads, sandwiches, rolls, pizzas and dessert.  GREAT progress!

Beckee and Steve Pollard of Guido's Pizza

Beckee and Steve from Guido's/W.O.W.

Hint of GREATness #1 – Taste has not been compromised by gluten-free status.

Pizza Luce – Minneapolis, MN

Staying in Minneapolis for a wedding weekend in September gave me the opportunity to taste a bit of the Mini-Apple’s famous pizza spot, Pizza Luce. Pizza Luce has 5 locations in Minnesota that are all GREAT trained. At the downtown location, the servers were gluten-free informed and the gluten-free options on their menu extensive.

Gluten-Free Pizza at Pizza Luce

One of Pizza Luce's yummy gluten-free pies

Confession…I ate there twice and could have placed an order for the road. What is it about eating in a restaurant that you know has GREAT status, and all will be well with the tummy? It’s seems you have to try everything that’s offered and more. As the director of GREAT, I know what’s supposed to happen when a dining establishment takes training seriously.

Hint of GREATness #2 – The waitstaff welcomes you with a gluten-free menu, say they’ve been trained, and can answer ingredient questions with ease.

More spots and hints in my future blogs!


See the full list of GREAT Kitchens in the U.S. at

April 20, 2012 at 10:03 am Leave a comment

It’s Spring! Time for a Health Fair!

New Year’s Day may be the time for making resolutions, but the breath of spring in the air makes all of us want to live healthier lives as we get ready to be outdoors more and more. Enter, the health fair!

Two weeks ago, I had the pleasure of participating in two such events, each one targeting a very specific audience.

Sunday, March 25, brought the annual “Education Day” at The Children’s Hospital of Philadelphia (CHOP). Called Growing up with Celiac: A Forum for Parents and Children, this information-packed event was organized by Dr. Ritu Verma, pediatric gastroenterologist and Section Chief of CHOP’s Gastroenterology and Nutrition group. Dr. Verma leads the Center for Celiac Disease at CHOP and also serves as a very active member of NFCA’s Scientific/Medical Advisory Board.  This lady wears many very important hats!

Dr. Ritu Verma of The Children's Hospital of Philadelphia

Dr. Ritu Verma

The conference covered a wide range o f topics ranging from ‘The Genetics of Celiac Disease,’ with Curt Lind of CHOP, to ‘Celiac + Social Media,’ with Priyanka Chugh, and ‘Bone Health in Children with Celiac Disease,’ with Babette Semel, PhD.

CHOP Education Day March 2012

Welcome to Education Day!

Our own Alice Bast spoke about a topic that is grabbing national attention as students struggle with the gluten-free diet in school and on college campuses. In ‘Gluten-Free Goes to School,’ Alice outlined the perils and some solutions for this important facet of a student’s daily life.

NFCA fans Jillian and Danielle

By the way, there was loads of delicious gluten-free food provided as samples by vendors and also for a plentiful breakfast and lunch.

A big thanks to NFCA volunteer Sarah Terley, who passed out information to parents and kids coming to our table.

Sarah Kristin and Alice at CHOP Education Day March 2012

Sarah Terley, Kristin Voorhees, Alice Bast

Thanks to the discerning palate of my associate, Kristin Voorhees, we ended the day with a delightful meal at Garces Trading Company at 1111 Locust Street in Philadelphia.  The Garces Restaurant Group has completed NFCA’s GREAT Kitchens program and, as a result, we were confident that the gluten-free items on the menu really were produced in a safe manner.  Very reassuring. Anne Lee of Schar USA joined us as we enjoyed a delicious gluten-free meal, including fabulous desserts. The quite decadent Chocolat is to die for!

Garces Trading Company

Garces Trading Company

On Saturday, I joined the group at a free Men’s Health Fair at The First Pentecostal Church in Lambertville, NJ. Organized by Jonathan Bridges, a church member and owner of Wallingford Farms, this preventive health collaboration between the church community and healthcare service providers offered lectures plus screening for a variety of the basics: hypertension, hyperglycemia, BMI and more.  Many thanks to Karen Dalrymple and Donna Sawka of the Greater Philadelphia Area Celiac Support Group for coming out to spread the word about celiac disease, gluten-related disorders and the gluten-free diet.

So…great weather, interesting information, delicious food…an all around GREAT experience!

– Nancy

April 5, 2012 at 11:58 am 1 comment

Attending a Celiac Disease Patient Conference: Part 1

Earlier this month, I had the opportunity to attend the Intestinal Immune-Based Inflammatory Diseases Symposium at Columbia University. It was a joint event presented by Columbia’s Celiac Disease Center and the Jill Roberts Center for Inflammatory Bowel Disease at Weill Cornell Medical College. I was there for the Patient Program, but it also included a CME track for physicians, dietitians and other healthcare providers.

Gluten-Free Rolls

Yes, these are gluten-free. I'll get to that in a bit.

I had been to conferences before, but never one that focused specifically on celiac disease. Needless to say, I was stoked to meet people who are just as excited to talk about gluten-related disorders as we are.

First up, I’m covering the scene: The People and The Food. Watch for my next post, when I get down to the nitty-gritty: The Education.

The People

As someone who spends more than 8 hours a day in front of a computer, it was a treat to get some face-to-face time with patients and healthcare providers. Breakfast, lunch and dinner afforded us plenty of time for chit chat, and I met a wonderful group of people.

There was Patty McG, a spunky teacher who was diagnosed with celiac disease late in life. She was so full of energy, so inquisitive at sessions and so hilarious at mealtime – a thrill to be around.

Andrea and Allie

Our new friends: Andrea and Allie!

Then there were Andrea and Alexandra, a mother-daughter duo who flew in from Ohio for an appointment at Columbia’s Celiac Disease Center, then stuck around a few extra days for the patient conference. Alex is a senior in high school and was preparing for a 2-week trip to Spain. Kristin and I immediately offered some travel resources to help her stay gluten-free while abroad. They were thrilled to hear about the new Gluten-Free in College section on our website. We’re sure Allie will be a well prepared gluten-free student come move-in day.

Next, I met Jonas Ludvigsson, MD, PhD, a renowned celiac disease researcher from Sweden who is doing research at the Mayo Clinic on a Fulbright Scholarship. I’ve posted a number of his studies on our Research News feed, so it was an honor to spend some one-on-one time with him. Plus, he’s a hoot. (He also wrote a guest post for NFCA back in November.)

Finally, there was Barbara Halpern, a long-time champion of NFCA. Barbara is a practicing dietitian in not one, not two, but three states. She even does nutrition counseling via Skype, so she’s never far out of reach. She leads a local celiac support group, and she’s done wonders to promote our Primary Care CME to physicians.

The Food

What’s a celiac disease conference without delicious gluten-free food? Each day, we enjoyed a lavish spread at each meal, including a seemingly endless supply of gluten-free rolls from Free Bread Inc. These rolls were a huge hit with gluten-free and gluten eaters alike. They were warm and hard on the outside, moist and doughy on the inside. Flavors included the Jalaa!, with cheddar cheese, buttermilk, and jalapeno, and our favorite, the MOXY, with gluten-free oats and seeds, molasses and agave nectar. It wasn’t uncommon for someone to eat two or three rolls in one sitting. (Attendees came from far and wide, so they were stocking up while they could.)

Fresh salmon

This salmon filet was HUGE!

To balance out all that bread, we filled our plates with dishes like salmon, roasted vegetables, chicken with a Dijon sauce, and cold gluten-free pasta salad from the buffet. I have never seen salmon filets as big or beautiful as they ones they served. They were so fresh and tasty, I barely used the sauce.

Gluten-Free Pasta Salad

Gluten-free pasta salad.

For dessert, there was gluten-free cheesecake – plain and chocolate – and fresh fruit. The cheesecakes were light and creamy, not like the dense cheesecakes I’ve had in the past. And who doesn’t like fruit?

Stay tuned for my follow-up post, including some key takeaways from the sessions.

– Cheryl

March 23, 2012 at 1:20 pm 2 comments

Gluten-Free Products at Expo West 2012: New Snacks, Better Nutrition

Last weekend, Alice and I went to Natural Products Expo West in Anaheim, CA. It was a blast!

Let’s start with the magic of Disney: their chefs are a delight, and the 8:40 p.m. nightly fireworks were icing on the gluten-free cake.

Speaking of cake, gluten-free sales continue to boom. At the Expo, we learned that Mintel projects the market to reach between $8.5 and $9.9 billion by the end of 2013. Mintel, along with market research firm SPINS, stated unequivocally what we all know – that gluten-free is a long-term industry trend that is here to stay, not a short-term fad that will fade into distant memory.

As far as products go, we saw the continued abundance of gluten-free salty snacks, including several lentil-based crackers. We previewed Rudi’s new tortilla, which didn’t crack or break when rolled or folded, and we spent Thursday evening with the team from Rudi’s and Charter Baking, including their CEO Jane Miller.

We saw the emergence of stronger nutritional profiles at Expo West this year. Schar’s new Gluten-Free Multigrain Ciabatta Parbaked Rolls are delicious and satisfying. And Lucy’s has developed a brownie bite free of most major allergens. Also free of all 8 allergens was Enjoy Life’s individually-wrapped packs of trail mix, providing easy-to-grab fiber and protein from a flavorful blend of seeds.

After an endless day of sampling chips, pizza, cookies and bars, I was especially excited to eat some actual veggies. Thank you to Kettle Cuisine for their delicious array of savory soups (I love the Roasted Vegetable) and Thai Kitchen, for their curried vegetable stir-fry with fresh pea pods and peppers. Yummy.

I spent the plane ride home reading the story of Bob Moore (of Bob’s Red Mill), whose inspirational act of generosity caught our attention when he gave the company to his employees on his 81st birthday. “These folks helped me build the company up,” Bob told me. “How could I do anything else?”

– Jennifer

March 14, 2012 at 10:31 am 1 comment

Gluten-Free Dining: We Don’t Really Want to Be “Special”

Last Monday, I decided to step away from my desk for a much needed day off. A mental vacation, a road trip to do a bit of shopping, and lunch with my best gal pal would be the perfect way to spend the day off! After stocking up on herbs and spices at Penzeys and checking out the furniture store sales, I met Kyle at her favorite restaurant.

Kyle and Beckee

Kyle and me

History Note: Kyle and I have been best friends since freshman year in college. People mistake us for sisters because we kind of look alike and think alike. We stood next to each other when we married our mates, and we birthed our babies exactly one week apart. When I was diagnosed with celiac disease, Kyle immediately learned about my diet, figured out how to feed me and threw a dinner party. Over the years, we’ve taken a few ‘girl trips’ where the days consisted of coffee on the patio, shopping, researching fabulous gluten-free dining spots, and ordering everything gluten-free so we could share plates. She is truly a GFBF (gluten-free best friend).

Lunch at the Biltmore

One of our previous "girl trips" - Lunch at the Biltmore

Kyle has been trying to coax me into dining at her favorite restaurant for years. It’s not that I hadn’t eaten there; in fact, I had dined there many times 20 years ago…BC (before celiac). I had not stepped foot inside since because they didn’t offer gluten-free options until recently, and I had been leery of dining there before important business trips or meetings for fear of possible cross-contamination. I just couldn’t take a chance.

So I decide, what the heck, it was close by and they have dynamite salads. How can they screw up a salad, right? Plus, it’s a Monday and surely they won’t be that busy. Plus, Kyle knows the owner/chef and staff well, and I was curious about their gluten-free menu.

I arrive to a packed room. Kyle waves to me from the bar where we plan to sit. After hugs and catching up, we ask for menus. Kyle asks for the gluten-free menu before I do…she’s so excited. We wait.

Eventually, the bartender comes back and spouts off the daily specials. We ask for the gluten-free menu again. He turns away, digs under a pile of menus, and puts it in front of me. Laminated and single-sided, it lists about ten choices. Salads and entrees were listed with instructions about what to leave off the dish. No prices, no restaurant logo, no description of the dish, no GREAT Kitchens seal either, but I knew that wasn’t going to be there – they haven’t gone through our gluten-free training.

I had a bad feeling. It was a busy lunch, I could see the kitchen staff hustling, and I had a gluten-free menu that didn’t really give me much guidance or confidence in the outcome.

Kyle looks at my menu and offers hers with colorful descriptions and prices to help me choose a few options to investigate. She waves over the owner, asks me to dig out a business card, and makes an introduction. (Kyle is extremely proud of me. She’s the one who gave me confidence and support to start a gluten-free consulting business 5 years ago, which lead to my dream job with NFCA.) With a smile, she hands him the card and says, “This is my dear friend who works for the National Foundation for Celiac Awareness. She is the director of a program called GREAT Kitchens.” The owner took a look at my card and replied, “So, am I under investigation?”

Was he kidding? He didn’t look like he was kidding. Did he need to be investigated? We laugh it off, and I ask for some help choosing lunch. The tortilla strips on the salad are fried in the same oil as breaded foods, but the menu doesn’t mention it. The grill does not have bread products cooked on it – good news. The salad dressing ingredients…I can tell by his face he isn’t really interested in sharing the recipe. I order the grilled salmon salad with vinegar and oil on the side. I notice the owner pop his head into the kitchen to possibly alert the staff.

Our salads arrive in front of us. They are fine. We eat. We pay the bill. We leave. Hugs and back on the road.

Driving home, I just felt terrible. I had an hour to stew over what had just happened. I wanted to cry because I just felt awful. My food was fine. No cross-contamination, the salmon was perfectly cooked, the greens were fresh. But I still felt horrible, empty inside. I had just been to a well-known restaurant that many people would give a four star rating for exceptional service, food quality and ambience. Not so much for me…maybe a half a star for their gluten-free guests.

The next morning Kyle called and said, “Have you ever been treated so poorly in all your life? I can’t believe how rudely we were treated. And that menu, how could you call it a gluten-free menu with nothing to help you make good choices? I’ve been getting madder by the minute thinking about it.”

Unfortunately, this wasn’t my first time dealing with restaurants that offer gluten-free options/menus to keep up with the trends but don’t really understand the customer. This past year, restaurants offering gluten-free options rose 61% according to foodservice consulting firm Technomic. Gluten-free guests have made progress in getting the attention of the restaurant industry by requesting options. But we have a long way to go to make sure they understand that special diet customers don’t really want to be special. They want to know that their food is safe and that their needs are understood. They just want to enjoy their lunch with a friend.

– Beckee

Learn more about NFCA’s gluten-free restaurant training program: GREAT Kitchens

February 28, 2012 at 10:49 am 7 comments

Mrs. Alaska International 2012 Wants YOU to Attend NFCA’s Webinar

[Recently, I’ve been chatting with Brandy Wendler – a.k.a. Mrs. Alaska International 2012 – on Twitter. I knew she is a celiac advocate, but it wasn’t until she sent us a nice note that I learned she has a passion for heart health, too. I invited her to share her story and explain why she’s excited for next Tuesday’s FREE webinar on Gluten-Free and Heart Health.]

I was diagnosed with celiac disease when I was working as a nurse in Atlanta. I worked in a cardiovascular ICU where we did everything, including heart transplants. I love the sound of a heartbeat. It has always been soothing to me. I feel the heart symbolizes the core of who a person is and represents their life. I like to think it is the most important (and beautiful) organ in the body. So, when I found out I had an autoimmune disease, I found myself wondering: How does this affect my heart?

Brandy Wendler

Brandy Wendler

Before my diagnosis of celiac disease, I had been sick and having symptoms for almost 10 years – which is an average time from onset to diagnosis. Being a medical professional did not increase my chances of diagnosis. In some cases, it hampered it. I had a colleague tell me my symptoms were all in my head. After all, I had been treated for anxiety, depression, chronic fatigue and restless leg syndrome. I could sleep for days and not feel rested.  However, my illness wasn’t imagined. It was real.

I was diagnosed with Hashimoto’s thyroiditis shortly before my celiac diagnosis, I suffered from chronic anemia and frequently had low levels of B vitamins and Vitamin D on my blood tests. Many celiacs have similar stories. All of these issues, though, led to a huge lack of motivation for exercise that would be beneficial to my heart. I was also malnourished and ate anything high in calories – another choice that was not good for my heart.

After I was diagnosed with celiac disease, my depression and chronic fatigue went away. I have normal iron, Vitamin B, and Vitamin D levels now. My thyroid disorder is under control, and I have a lot more energy! I have also changed the way I eat. Not just removing gluten, but also focusing more on eating my servings of vegetables, fruits and lean meats. The carbohydrates that I choose to eat are typically complex carbs like sweet potato, brown rice, and certified gluten-free oats. All of these are high in fiber and good for your heart.

With the training of a master’s in nursing, these choices come pretty easily for me. Being in the medical field is definitely an advantage when you have two autoimmune diseases. What about my celiac friends with no medical background, though? I sometimes worry if they are making the most informed choices. Most of the pre-packed gluten-free foods are high in saturated fats, sugar, salt and calories, which is not good for your body, much less your heart.

At the end of the day, it can be overwhelming. Having celiac disease is a huge adjustment, but it is possible to live with celiac disease and be kind to your heart. The first step is starting and maintaining a gluten-free diet. Sneaking a piece of gluten here or there is simply not going to help you in any way – no matter how good it may taste. The diet is essential to keeping all associated disorders in check.

NFCA webinars

The next step would be to educate yourself and make the right choices. I was thrilled to see that NFCA is offering a webinar on Gluten-Free and Heart Health. It makes it easier for my extended celiac friends to be informed and take care of themselves. Heart disease is the No. 1 killer of men and women in the U.S.. Early action to prevent heart disease is the key. So please sign up for the webinar with me and take your heart health seriously. Your heart has been with you from day 1, and it truly beats only for you!

About Brandy

Brandy Wendler just completed her year as Mrs. Alaska United States 2011 and now holds the title of Mrs. Alaska International 2012. She is currently working on Alaska state legislation SCR 16, which aims to recognize May as National Celiac Awareness Month. Last month, the legislation was read on the floor and was referred to the Senate State Affairs Committee. Read more on Brandy’s blog.

February 2, 2012 at 11:02 am Leave a comment

Meet Rhiannon: NFCA Intern and Symptoms Checklist Success Story

[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.

Rhiannon Brown - NFCA Intern

My first gluten-free blooming onion!

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

January 18, 2012 at 10:19 am 1 comment

Inquiring Minds Want To Know!

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 website, in our newsletter and more.

Take the Gluten in Medications Survey

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!

– Nancy

January 17, 2012 at 8:58 am 2 comments

My Budding Interest In Celiac Disease & The Prison System

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.

Letter to NFCA

One of the many letters from prisoners with celiac.

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!

– Whitney

January 6, 2012 at 3:00 pm 2 comments

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