When Life Hands You Lemons…

The following is a guest post by Dhanu Thiyagarajan, a student at University of Pittsburgh and founder of Gluten Free My Campus, the university’s gluten-free student group.  Dhanu is also a Campus Ambassador for Udi’s Gluten Free Foods. 

Being gluten-free is difficult, but being a gluten-free college student is even harder. I found this out the hard way – from experience. I came to University of Pittsburgh unaware of the city, college-life and, worst of all, where to get safe gluten-free food.

I did come under one assumption that turned out to be very wrong; I believed that there would be a gluten-free club. So many people are gluten-free and especially on a college campus in the city, how could there not be a gathered group of people who know the best gluten-free restaurants and the inside secrets? Once I got there, I realized this club didn’t exist and that scared me a lot.  I wasn’t sure why there wouldn’t be a group on campus.  Was I the only gluten-free student?  Was finding gluten-free food so easy that there was no need for a special group or club?

I gave the situation some time, but finding gluten-free options was terribly difficult. This led me to think there couldn’t be any other gluten-free students, but statistically that made no sense. So, I decided to form the club myself.  It didn’t exist, but it needed to. The university needed improvements and I needed help finding gluten-free options. I talked to the nutritionist and the chef at the dining hall (among other people) and found ways that I could connect with other gluten-free people on campus. I was able to engage roughly 10 people and set up a casual meeting.

The day of the meeting came, and I was so excited to meet these other people and talk about the struggles of being gluten-free on campus.  To my dismay, nobody came.  Not a single person.  I figured they didn’t have any problems being gluten-free, and that this didn’t matter to them.

Thankfully, my parents and friends convinced me to try again, so I did. This time, fellow gluten-free students came to the meeting!  I am so glad they convinced me to give it a second try, because now Pitt has a fantastic gluten-free club: Gluten Free My Campus!

It all worked out in the end; meet the officers of Gluten Free My Campus!

Have you had a similar experience, or do you know a gluten-free student who did?  I’d love to know what their experiences are like on other campuses!

– Dhanu

Top 5 Things To Know About Being Gluten-Free Before Applying to Colleges

The following is a guest post by Dhanu Thiyagarajan, a sophomore at University of Pittsburgh and founder of Gluten Free My Campus, the university’s gluten-free student group. Dhanu is studying bioengineering and hopes to go to medical school to become an OB/GYN doctor. She has been gluten-free since December 2010.

Applying to college is a hard decision on its own, but it’s even harder being a college student on a gluten-free diet. These are five things that I found to be really important regarding the gluten-free diet when applying to colleges.

1. On-Campus DiningThe dining halls and areas on campus should have safe gluten-free options available for you. It is very important to know that those who are cooking your food know how important it is to avoid cross-contamination.  If the college can’t offer this for you, make sure you can cancel your meal plan.
   

   Ask if there’s a gluten-free student group on campus.

2. Student Health CenterTalking to the dietitian is helpful, so they can help with your diet and can inform you accordingly of any updates regarding the gluten-free options on your campus. Make sure the health center accepts your insurance and can help you in case you get sick from accidental gluten ingestion or in general.
3. Living in a DormIt is good to know what appliances are allowed in your dorm room.   A fridge with a freezer is your best friend!
4. Campus SupportHaving a gluten-free club on campus is wonderful because you know there is support on campus, and people to help you with this adjustment.  Also, knowing if there is a decent amount of people on a gluten-free diet will allow you to be more confident that gluten-free living there is possible.
5. Off-campus restaurantsSocializing with friends is a huge part of a college lifestyle and a lot of that is done during meals.  It is good to make sure that there are restaurants around where you can go, eat and socialize safely.

Different people have different needs for college, so it is important to prioritize your needs and choose your colleges accordingly.

– Dhanu

Two Gluten-Free Parties with GREAT Gals

In July, I had two golden opportunities to celebrate the generosity of personal friends and friends of the National Foundation for Celiac Awareness (NFCA).

We all love a party but some of us are really good at throwing one of the biggest parties in town. Meet Chris Auman, a member of the NFCA Team who has worked on our events since the day she walked in the door years ago. Chris has been a huge part of the energy and organizational power behind Appetite for Awareness as this fun-and-food-filled event has grown from an intimate evening in a private home to the festival that we enjoy today.

Right now, Chris is organizing the Marketplace for Appetite for Awareness 2012 being held on September 23^rd at the Historic Strawbridge Building at 8^th & Markets Streets in Philadelphia. If you want to have loads of gluten-free fun, come on down. Chris will be ready for you.

On July 27^th, we held a party of a different kind when we celebrated Chris’ birthday.  Alice Bast, Chris and I headed to Cantina Feliz in Fort Washington where we enjoyed a delicious gluten-free Mexican meal. The gazpacho with watermelon, tomato, cucumber, a house specialty, was a big hit at the birthday table.

Alice, Chris and me after our delicious gluten-free Mexican meal. That’s Chris on the right.

On Sunday, July 29^th, I made my way from my home in Blue Bell, PA to the absolutely fascinating home of Jennifer and Ken Arters in Downingtown, PA. Jen was holding an in-home shopping spree benefiting NFCA. Featuring jewelry from Stella & Dot, along with fabric purses and bags of all kinds from Thirty-One, this trunk show was like Christmas in July, as far as I was concerned. Temptation was everywhere.  Yes, I succumbed!

Jen prepared delicious gluten-free treats from tasty miniature meatballs to fabulous mini red velvet cupcakes. And, yes, I succumbed.

A big thank you to Jen for hosting the party benefiting NFCA!

Jen and Kenny showcased these delightful gifts in their 1850s house lovingly being brought back to its former glory.  Restoration is hard work designed for talented and skilled people with a passion for making things better. Jen and Kenny have an equal passion for raising awareness of celiac disease. All of us at NFCA are grateful for their spirit of volunteerism and their dedication to the celiac cause.  You will see them at Appetite for Awareness – helping out, of course.

So many celiac resources!

– Nancy

Get tickets to Appetite for Awareness »

A GREAT Coincidence

Last February, I received a random phone call on my NFCA line. It was a mother, Jenny Tierney, who seemed pretty devastated. Her teenage twin daughters had just been diagnosed with celiac disease.  (All of the staff at NFCA answer all kinds of calls from newly diagnosed patients and others in the food industry or healthcare field. It’s a great opportunity to walk them through the resources available at CeliacCentral.org.)

After a review of NFCA’s resources, Jenny felt a bit better and she agreed that she could handle adapting to the gluten-free diet at home and working with the school, but her biggest fear was sending the girls off to camp. The girls had gone every year since they were very young to this amazing camp for most of the summer. The solution was easy.  I shared information about GREAT Schools, Colleges, and Camps and suggested she have the camp contact me.

A month later, I received an email from a college girlfriend Sara, who lives near Kansas City. Sara told me about her neighbor, Kathy Dix. Kathy and Sara had been chatting, and the topic of gluten-free foods came up. Sara is always telling people about her gluten-free college pal and my job with NFCA.  She thinks it’s amazing how 20 years ago when I was diagnosed with celiac disease, it was considered a rare disease and food availability was scarce. Over the years, Sara has referred me to anyone interested in anything about gluten-free. She also cuts out articles related to celiac disease and gluten-free from newspapers and magazines and sends them with a note saying, “Reminded me of you,” or “Hey isn’t this cool?” or “Wow, this gluten-free stuff is everywhere.”  Gotta love her for it.

The camp sure looks like fun!
Photo credit: Camp Ogichi Daa Kwe Facebook page

Well, it just so happens that Kathy needed gluten-free training for her camp. She’s the director of a girl’s camp in upper Minnesota called Camp Ogichi Daa Kwe.  A conference call was set up to talk to the staff to understand their needs and how NFCA’s GREAT Camps program could help. On the call, I perceived the compassion and love the staff seemed to have for their mission at the camp, and how vested they were in giving all their campers a complete experience. They were ready to sign up and complete the course.

Toward the end of the conversation, they revealed that their interest in learning about gluten-free protocol for the camp staff had to do with twins that returned every year. These twins had been diagnosed with celiac disease recently, and Camp Ogichi Daa Kwe wanted to live up to its “Strong Spirited” name and ease the girls’ mother’s concerns about sending them to camp while they were still learning the gluten-free diet.  Kathy’s goal was to ensure that these young women would continue their “growth in self esteem, deep seeded friendships, and memories to last a lifetime,” and the first step in achieving this goal was becoming GREAT trained, allowing the girls to continue their summer tradition of attending Camp Ogichi Daa Kwe.

Small world, isn’t it?

– Beckee

New Gluten-Free Find: Pure Tacos in Philadelphia

A few years ago, I caught wind of a place called Pure Tacos that serves incredible food – all gluten-free. It’s based right on the boardwalk in Ocean City, NJ, and has become a hit among the general population and those looking specifically for gluten-free eats. Now, the beachside stand has an urban outpost, with a new location that just opened in Center City Philadelphia.

Inside Pure Tacos in Philadelphia

Kristin and I were there for the soft opening (like a dress rehearsal) of Pure Tacos in Philadelphia, which gave us the chance to taste the tacos before anyone else. There, we met up with Michael Savett of Gluten Free Philly and Claire Baker of So, What Can You Eat? and enjoyed a carefree, finger-licking, tortilla chip dipping meal.

What’s on the menu? First, there’s your usual chicken, bean and ground beef option. Then it kicks up with Cheeseburger and Chicken & Bacon Ranch. But it’s the Premium Flavors like Orange-Chili Fish, Chipotle Beef Brisket and – my surprise favorite – Seared Mushrooms, that draw in the crowds. Each of these include two tacos on corn tortillas (you can also opt to have them over salad, nachos or rice) and topped with things like sour cream, citrus guacamole, cilantro and homemade salsa.

Premium Flavors – and they’re all gluten-free!

Now, what about that gluten-free claim? Well, one of the co-founders has celiac disease, so they went to great strides to ensure a safe place to eat. There is no gluten allowed in the facilities; in fact, employees are instructed to eat the gluten-free food that is provided at Pure Tacos or go out to eat lunch. And as is standard for restaurants, employees must wash their hands before returning to work.

When you’re used to asking question after question at restaurants, it’s a relief to find a place where you can just order what you want. For it to be tasty and under $10? That’s gold. Our group gave nods of approval as we worked our way through the tacos, dripping salsa and all. We even shared a side of guacamole, which had a light, creamy texture and a flavor I still have yet to put my finger on. Whatever, it was good.

I’ve already recommended Pure Tacos to a few local friends, and I hope to see them at Appetite for Awareness this September. I’ll remind them to bring the guac.

– Cheryl

Tickets to Appetite for Awareness 2012 are now available. Get Early Bird pricing »

Spring Travels: Around the World with Celiac Experts and Dietitians

In my last post, I described where the first half of my spring travels took me – Orlando, Manhattan and Washington, DC. Now, I’m going to fill you in on an international trip and other domestic travels!

It was an honor to share findings from NFCA’s collaborative study with the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) and Lankenau Institute for Medical Research (LIMR), “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” as a poster presentation at an International Meeting on Coeliac Disease in Florence, Italy this past March.

Together, NFCA, BIDMC and LIMR aimed to understand the diagnostic experiences of patients who use the web, specifically NFCA’s Celiac Disease Symptoms Checklist, to prompt a self-initiated diagnosis of celiac disease or non-celiac gluten sensitivity. NFCA’s Celiac Disease Symptoms Checklist was designed to be a patient education tool that drives awareness of celiac-associated symptoms and conditions. Our ultimate goal was (and remains to be) that patients would use this tool to start a conversation about celiac disease with their healthcare providers. As a result, the Checklist provides the ample opportunity to study health behavior. You can learn more about the study, including the ability to view the poster itself, by heading over to NFCA’s Research News feed.

Of course, I realize that most people don’t have the opportunity to travel to Italy for work. What can I say, I’m a lucky girl and I know it.

For those of you who don’t know, I studied abroad in Florence during my junior year of college (pre-celiac days), so I know the city quite well. It was my first return trip since 2006 and the experience wasn’t anything short of awesome! Between attending presentations from some of the finest celiac experts in the world and enjoying gluten-free pasta and pizza in the country from where pizza and pasta hail, it was wonderful.

What’s more, Alice and I were beyond impressed with how the Italian foodservice industry understood celiac disease and handled gluten-free menu options. Here’s an example: more than once we were turned away from a restaurant who knew what gluten-free required, but were honest about not being able to control cross-contamination. The restaurateurs and servers understood that the gluten-free diet is a form of medical nutrition therapy and not the latest fad diet.

Vegetable pizza with spicy olive oil for lunch.

Case in point number two: On my last night in Florence I visited one of my favorite gelato spots, Festival Del Gelato, for an after-dinner treat. After suggesting that I pick a different flavor because of the risk of cross-contamination (chocolate hazelnut is popular!), the clerk asked if I would like a gluten-free cone instead of the normal cup and proceeded to grab an individually wrapped cone from a rack. How fun!

My second favorite flavor, gelato di riso or rice pudding, on a gluten-free cone.

After Italy, my next stop was Little Rock, AR. Talk about night and day, huh?

In an effort to raise awareness of celiac disease and non-celiac gluten sensitivity among Arkansas dietitians practicing in the long-term care, foodservice and clinical settings, NFCA partnered with the Arkansas Dietetic Association (ArDA) and the Arkansas Dietetics in Health Care Communities (ArDHCC) to participate in their 2012 Annual Meeting & Expo.

After spending many months coordinating educational lectures, preparing a delicious gluten-free food sampling and organizing materials for the exhibit hall, I traveled to Little Rock where I spent 3 days. It was great to finally meet the ArDA and ArDHCC team with whom I had spent countless hours emailing and talking via the phone. I also had the pleasure of spending some time with Anne Lee, MSEd, RD, LD, Schar USA’s Director of Nutritional Services, and Dr. Lucy Gibney, President and CEO of Lucy’s, a GREAT Business Association Member. You can read more about my experience in Arkansas here.

Gluten-free food at the ArDA and ArDHCC meeting.

Just two days after returning from Arkansas I made my way north to Boston to attend a presentation by Claudia Dolphin, a graduate student from Emerson College’s Master’s in Health Communication program, on a research project titled, “Screening for Health: Attitudes and Beliefs of Non-Participants in Disease Testing.” As an alum of Emerson’s Health Communications program, which is in collaboration with Tufts School of Medicine, I was honored to serve as a co-preceptor to Claudia over the past 6 months as she completed her Applied Learning Experience (ALE) project, the equivalent to a Master’s thesis. Here’s another twist to the story: the other preceptor providing guidance to Claudia was my own preceptor from my grad school days – Dan Leffler, MD, MS, the Director of Clinical Research at the Celiac Center at BIDMC in Boston. It has been pretty neat experiencing things come full circle.

Anyway, back to the presentation…

Claudia’s ALE project focused on conducting research on the perceptions of celiac disease among families where a member has been medically diagnosed. Her research sought to uncover the attitudes and beliefs of at-risk family members who have not been tested for the disease.

You may have noticed recruitment notices for research participants this past March and April and wondered what would become of the research. Well, now you know! Together with BIDMC, we are currently gearing up to implement Claudia’s work on CeliacCentral.org and into NFCA and BIDMC programming. Check back soon for an update on how you can help persuade your family members to take getting tested for celiac disease seriously.

In late May, my business travels ended with a trip out to sunny San Diego to attend Digestive Disease Week 2012, otherwise known as DDW, the world’s largest gathering of physicians and researchers in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.

The view from our hotel at Digestive Disease Week 2012.

Many of you may have trouble staying awake just reading this meeting’s subject matter, but as a self-proclaimed nerd, it’s the one conference I look forward to each year. In addition to learning the latest and greatest research, it’s always a pleasure to catch up with the field’s different thought leaders, many of whom are members of NFCA’s Scientific/Medical Advisory Board. In addition to attending the lectures, DDW attendees also have the opportunity to visit the poster sessions in the exhibit hall and even speak with the study’s researchers if they happen to be standing at their poster. Each day, the posters are changed to reflect a new topic. Saturday, May 19^th was designated for celiac disease.

Here are a few highlights from this year’s conference:

• Dr. Sveta Shah from BIDMC presented findings from the Boston group’s study “Celiac Disease Has Higher Treatment Burden Than Common Medical Conditions.” A notable conclusion included that “despite high treatment burden, celiac disease patients reported high disease specific health state.” As a result, Dr. Shah and her colleagues suggest that, “the burden of following the gluten-free diet may be a reason why adherence is limited and argues for the need for adjunctive therapies.” I personally think that this an important finding given what seems to be continually emerging research on the importance that quality of life plays in celiac disease management.
• Using data of 7,798 persons observed from the National Health and Nutrition Examination Survey (NHANES) 2009-2010, Jinjuvadia et al. discovered that an estimated 1 in 111 individuals in the U.S. population has celiac disease. The group also noted that celiac was more common among men than women. While the disease prevalence is certainly not “new” news, I thought their method was an interesting way to capture celiac disease in the U.S. And, given that we currently believe more females are diagnosed than males, I found their other discovery to be interesting, too.
• In the world of celiac disease, we are programmed to believe that gluten is evil. Judging by the work of a group of researchers led by Dr. Schuppan (the scientist who led the way in identifying tTG as the celiac disease autoantigen), gluten may not be the only “evil” protein involved. On Saturday the 19^th, Alice and I had the privilege of meeting Dr. Zevallos, lead author of the abstract “Isolation of Alpha-Amylase/Trypsin Inhibitors From Various Plants and Their Ability to Activate Innate Immunity in Celiac Disease.” Zevallos explained that they recently identified non-gluten components of wheat, the family of alpha-amylase/trypsin inhibitors (ATIs), as powerful activators of innate immunity. This time, they took it one step further and defined three classes of grains, including naturally gluten-free grains, and their substitutes according to their ability to fuel innate immunity activity. Stay tuned for more details as their research continues.
• The North American Society for the Study of Celiac Disease (NASSCD), the U.S. national society of medical, scientific and allied health professionals in the field of celiac disease, held its first General Assembly meeting during DDW. Although I wasn’t able to participate since I’m not a clinician, I attended the reception following the meeting and can attest to the establishment being an exciting development. The new group will provide leadership in advancing the fields of celiac disease and gluten-related disorders by fostering research and by promoting excellence in clinical care, including diagnosis and treatment of patients with these conditions. It’s the first time that the U.S. thought leaders have come together to form a clinical and research focused collaboration.

– Kristin

Celiac Disease Information, Please!

Celiac Disease Information, Please!

Even the slightest brush with celiac disease and other gluten-related disorders can bring questions to mind.  Lots of questions. The first question usually is … where do I turn for the answers that I need right now?

Most of you know that all of the information on www.CeliacCentral.org is available free of charge and to all comers.  The site covers lots of topics from “What is Celiac Disease?” to “Can I eat spelt on a gluten-free diet?” to getting the scoop on the latest research in the field.

But, from time to time, you just need to ask someone who can and will respond to you directly and personally.  Enter the marvelous ladies who have volunteered to answer the questions coming to NFCA via info@CeliacCentral.org.

Last month while I was visiting my family in Virginia, I slipped away to Washington, DC, to have lunch with one of these amazing women.  Gayle Wald has been ‘manning’ the info@CeliacCentral.org account for over three years, come rain or come shine. She has helped to train the new kids on the block and, undoubtedly, has dispensed answers and information to hundreds of writers with questions about their own situations.

When Gayle is not helping fellow celiac patients, she works as a professor at The George Washington University in Washington, DC, and is Chair of the Department of English there. She lives in the District with her husband and son.

At Gayle’s suggestion, we had a healthy and delicious lunch at Founding Farmers, a restaurant specializing in farm-to-table fare just a few blocks from the White House vegetable garden. And, yes, they serve gluten-free dishes.

Gayle Wald, just one of NFCA’s wonderful volunteers

Unbelievably, this was the first time that I had met Gayle personally.  It was great fun getting to know the woman behind the email address. The National Foundation for Celiac Awareness (NFCA) is extremely fortunate to have the benefit of her experience, along with the true care and concern that all of the ‘Women of Info@’ bring to this program.  I truly look forward to meeting each one personally, a neat trick as they live across the country from Pittsburgh to Wyoming to Iowa and beyond.

So, when you send NFCA an email, you will encounter one of these very special volunteers:

Kerry Doyle-Gundlach
Emma Lemon
Lori Magee
Rebecca Podio
Yana Thaker
Rebecca Lownes Urbano
Gayle Wald

A huge thanks to them all –and to Joanne Gallagher for keeping their “on duty” schedules straight. They are maaahvelous!

–        Nancy

 

Sweet Times Ahead

[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

On Wednesday, May 30, the Phillies won 10-6 to the New York Mets at Citi Field. Cliff Lee gets a shout out for pitching, and so do old timers Shane Victorino, Jimmy Rollins and Carlos Ruiz for playing a little offense. If the Phightin’ Phils continue to gain runs, they will have sweet times ahead.

My family team has sweet times ahead with birthdays, summer BBQs, wedding festivities and reunions. My sister and I love to find an unexpected Grand Slam in summer food adventures, just as much as watching the Phillies persevere against the New York Mets.

Below are two summer dessert reviews on the following baseball-inspired scale:

Single– Fair
Double– Good
Triple– Very good
Home Run– Must try
Grand Slam– Sublime

SO Delicious- Coconut Milk Fudge Bar Minis- certified gluten-free, soy-free and dairy-free – Home Run

SO Delicious Coconut Milk Fudge Bar Minis

Overview:  Allergen-friendly packaging alert!  With a certified gluten-free seal, dairy-free and soy-free labels on the front of the box, the SO Delicious Fudge Bar Minis get right to the point: They are safe.

Safety: In addition to the labels on the front of the box, SO Delicious Fudge Bar Minis contain allergen information on the side of the box, which includes that the company sample tests products for the presence of dairy, gluten, peanut, almond and soy allergens.

Note: For more information, visit http://www.sodeliciousdairyfree.com/

Taste:  One sample of the fudge bar is a satisfying mouthful of chocolate texture and flavor.  As the fudge bar melts on your palate, the dessert becomes a delectable chocolate mousse. After the first bite, the overpowering coconut flavor fades and each layer of the mini fudge bar is more delicious than the last.

Result: Coconut Be-LEE-vers and dis-Be-LEE-vers will come together this summer to enjoy the easily digestible and portion controlled fudge bar mini. (Tip: Be creative and enjoy with an assortment of fresh berries, as seen in above picture). 

BYOBS (“Bring Your Own Beach Snack”): Toss the fudge bar in a cooler and enjoy on the beach with friends and family!

Capogiro Kiwi Gelato- gluten-free and lactose free- Grand Slam

Kiwi gelato from Capogiro

Overview:  I found it…the perfect summer treat!  The Capogiro Gelato Café is a great spot to bring family or a special summer date.

Safety:  A portion of the flavors displayed at one time are gluten-free and lactose-free.   The staff is knowledgeable of the flavors, so don’t be afraid to ask questions!

Taste:  I was taken by the cool, natural flavor of the kiwi and delightfully surprised by the presence of the fruit seeds seamlessly placed in every mouthful.  Although I am a devoted fan of the kiwi, I love trying a new flavor every time, such as champagne mango.

Result:  A gluten-free and lactose-free taste of Italy in the heart of Center City, Philadelphia.  

Note: There are a few Capogiro Gelato Cafés throughout Philadelphia. For more information: http://capogirogelato.com/wheretobuy.php?c=n

BYOBS (“Bring Your Own Beach Snack”): Purchase gelato in large container with lid. Store in freezer and take out when ready to eat.

Now it’s your turn to try the gluten-free sweets of summer while tuning into the Phillies weekend series against the Florida Marlins at Citizens Bank Park.

– Nadina

*Join NFCA on Friday, July 20, 2012 for Celiac Awareness Night at the Phillies. Tickets are now available.

About Nadina:
Nadina Fraimow began volunteering with the National Foundation for Celiac Awareness (NFCA) in April 2011, and will be happy to answer messages sent to her attention at info@celiaccentral.org. Nadina learned that she has non-celiac 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

5 Tips for Starting a Gluten-Free Dining Group

[You’ve found some fabulous restaurants that serve gluten-free in your area, and now you’re ready to spread the news. We asked Carrie Forbes, author of Gingerlemongirl.com and The Everything Gluten–Free Slow Cooker Cookbook and leader of the Wilson/Eastern NC Gluten Free ROCK Support Group, to share how she gathered the troops and started a local gluten-free group.]

I started my local gluten–free support group in January 2010. It took six months for me to have the courage and enough people to put together a meeting (and the push to do it by my friend Jaime), but we did it! We had 6 people at our first meeting and that included myself, my husband, and my fearless mother-in-law! Our first meeting focused on local gluten-free resources and restaurants who could cater to a gluten-free diet.

Once the school year started again we began having regular monthly meetings and eventually added what we call “coffee breaks” several times a month. The coffee breaks were more informal times just to get together and chat, have coffee, and talk about all things gluten-free in our area.

As the group has morphed and changed over the past two years, we now have bi-monthly meetings and once-a-month coffee breaks. We now have about 25 active members who come to our meetings and over 45 members we connect with locally through email and Facebook, and the group is continuing to grow.

However gluten-free groups come in ALL different shapes and sizes. In addition to my thoughts on the best tips to share with others, I asked my friend Sarah Neilson, author of Celiac in the City and leader of her local gluten-free dining group Gluten-Free Milwaukee, to share some advice.

1. Determine the Primary Needs of your Local Group.

We have many different singles, couples, and families in our group, but the more we’ve grown, the more I realized that in our particular area we had lots of kids who needed support. They needed to know they weren’t the only kids. So we decided to link up with Danna Korn’s R.O.C.K. organization. We share her philosophy that life is good, and even though gluten-free can be a challenge, it doesn’t have to be a sad or negative experience!

How Sarah decided to form her group:  “For me, I wanted to get people together and do what we would normally do, but with other people, just like us. A group that comes together for good food, friends and fun. I wanted to focus on what we CAN have and where we CAN eat, so I highlight local Milwaukee (in and around MKE) restaurants that are willing to cater to us. I’m proud to say that we have only double up on restaurant options a couple of times, and that was only because people enjoyed them so much that we had to go back.”

2. Be Flexible!

Find times that work best for the members in your group. For some, gathering bi-monthly on a Satuday afternoon is best. Others prefer an informal coffee break once a month on a weekday evening. Make sure to build an open network for communication with your group. This can be through Facebook, through an email listserv, or even by using a Yahoo group to share information.

Sarah’s thoughts on being flexible: “During one of our first dinners, I polled everyone to see what they wanted to see from our group, wasn’t sure if I should go a more traditional route with a more support-group-like feel, but most folks felt they would like to just meet out for gluten-free pizza and a gluten-free beer and talk about how we make things work every day in our gluten-free lives. So we’ve stuck with that, and it works well for us.

“It’s important to remember that you can’t always please everyone — I do the best I can to accommodate our crowd and make the majority happy, and for the most part, they are so grateful. Some of my dearest friends are in the group now and I’m thankful that I decided to start this group and have kept it going each month for this long.”

3. Spread the Word.

As a blogger, I knew when I started our support group that I wanted to have a website to promote our group. We started using a “MeetUp” group, but that system was rather restrictive and outdated. Our group now primarily keeps in touch through a group email listserv and a very active Facebook page. We also have an improved website and blog to share documents, keep a group calendar, and to have a searchable web presence.

Sarah shares how she uses social media and her blog to spread the word: “I use Facebook as an easy way to communicate with our group, on my Celiac in the City page. Like I said, I like to focus on the positives — getting together and sharing in our daily adventures, what works for us, which products are on the “must try” list, etc.

“I contact companies each month to get samples of goodies for our group — or sometimes they contact me to review items and I ask for enough to give out to the group, the more “reviews” the better right?”

4. Allow the Group to Change and Grow.

When I first began our group, I was really concerned about making sure we met often to provide a lot of support for our community. However, after many months of lots of both formal and informal meetings, attendance started declining and I was becoming burned out. After talking with our group members and with leaders of other groups, I decided we didn’t need to meet nearly as often. Quality was more important than quantity!

Sarah shares different activities her group has enjoyed: “Some of the other things we’ve done: Field trip to the GF Expo, holiday cookie exchange (2 years of success!), several food drives to get more gluten-free options in our local food banks, a trip to Madison to try a new restaurant and the Silly Yak bakery. Big fun!”

5. Don’t Be Afraid to Ask for Help.

Learn the gifts that your other members have. I love to host baking classes with new members of our group along with coordinating the group blog and Facebook pages. Another member of our group Nancy, is a gifted hostess and shopper. Nancy hosts many of our group potlucks and also likes to take new members on shopping trips to teach them the best places to find gluten-free groceries in our area.  My husband is great at making posters and being the technical support for our meetings. Using the strengths of your members will help the “work” of the group to be evenly shared, as well as empower the people in your group to help others.

Lastly, no matter what you do with your dining group, no matter how big or small that it is, remember you will be providing a huge service to your community! Your time and energy will be an immeasurable blessing to local gluten-free population. You don’t have to be a perfect planner or leader, all you need is a deep passion to help the gluten-free people where you live.

If you have additional questions or need help starting a gluten-free group, please feel free to email me, Carrie Forbes: gingerlemongirl at gmail dot com.

– Carrie Forbes

*For an extended version of this post, including tips from Shirley of gluten-free easily and Nikki of Charlotte R.O.C.K. and organizer of many Gluten-Free Expos, visit: Ginger Lemon Girl.

5 Tips to Empower Gluten-Free Kids

[Your kids have learned the basics of gluten-free, so what’s next? Katie Chalmers, author of Mommy, What is Celiac Disease? and founder of G-Free Kid, has ideas for helping your little ones become proud and confident gluten-free champions.]

As parents, the best thing we can equip our gluten-free kids with is a positive attitude when it comes to being gluten-free — right from the start.  As soon as that optimistic attitude is in place, the next thing to help them cultivate is a budding sense of independence. As our children grow, we can help empower them to start taking the lead. Here are 5 tips that have helped my twin daughters (one with celiac and one with non-celiac gluten sensitivity) start to be ‘g-free’ advocates:

1.  Help them champion their own cause.

Show them some ways in which they can help spread the word and raise money for celiac disease awareness. Help them start a team for an upcoming celiac walk and let them help keep track of donations flowing in and asking friends and family to physically be there to walk together as a team. We have been doing two Celiac walks (“Making Tracks for Celiacs”) a year for the past 4 years — one with friends and extended family, and another one further away from home by ourselves. We take group photos, wear team tags and hang out before and after the walk. We usually win a gift basket for the amount of money we raised, and the girls help pick it out. Going home feeling supported by loved ones, with a prize and tons of free gluten-free samples in tow — plus a sense of pride in knowing we helped raise money for a good cause — is always a great boost for self-esteem.

If you don’t have one of these annual walks in your area, learn how you can raise money through Team Gluten Free or NFCA instead.

2.  Nurture their creativity.

Make your gluten-free kid feel like a champ by helping them design a “Super Celiac” or “Gluten-Free Girl” costume. If your child is still young enough to enjoy dressing up and playing pretend, letting him or her play make-believe Superheroes with a cape and power bracelets is a fun way to “zap gluten” or whatever they want to play.

If your child is old enough, let them have their own cooking show. Have them don an apron and chef’s hat and talk through a cooking demonstration while you videotape them. This will be good public speaking practice, and it will help them organize their thoughts, follow recipes, read aloud and use good eye contact. Have them practice what they plan to say and do on the video until they are comfortable enough for you to start taping. Post it on YouTube to get them excited that they made a “real” video, which the whole world can watch and learn from.

Do your kids enjoy music more than cooking? Together, come up with some new lyrics to go with a familiar tune — all about being gluten-free. Put it to music, videotape it and send it to friends and family.

Or let them start a pretend bakery where everything is gluten-free. Help them set up a place to play with pretend food, aprons, toy cash register, fake money, paper plates, etc.  Let them make their own signs, menu and decorations. Be their best customer and encourage the rest of the family to stop by with a smile and place an order.

Being gluten-free becomes natural and fun when you bring all of these types of creative play into your kids’ lives.

3.  Teach them to read labels.

For very young kids who don’t know how to read, send along a list of offending ingredients for caregivers, along with a list of naturally gluten-free items, such as fruit and raisins. Help little ones learn how to spot the words “gluten-free,” the certified gluten-free logo or other prominent labels. When looking at packages, the terms “multigrain” and “whole grains” can often be confusing for little kids (and even for adults!), so be sure to explain to them that just reading those words on a package doesn’t mean it is automatically ruled out. Corn and rice can still be considered multigrain or whole grain, too. Teach them that oats need to be certified gluten-free to be considered safe, and other similar tips.

Start label-reading lessons small, by going to Grandma’s house and showing them offending ingredients on labels. Then go home and have them read labels on their gluten-free products so they can see what is okay. If your child is old enough and has a long attention span, spend some time together in a grocery store (at a slow time of the week) and go through it aisle by aisle, explaining which kinds of food are gluten-free or not. Show them how many yogurts and ice creams are gluten-free, except those with cookies, brownies, sugar cone pieces, etc. Show them all the naturally gluten-free foods and the special area where the gluten-free products are. I do this with my daughters every now and then to test them on what they know, and they, in turn, always love to demonstrate their growing knowledge.  If this sounds too overwhelming for a younger child, then just do it in small doses on a regular basis as you do your weekly shopping together.

4.  Let them speak up for themselves.

Kids of all ages can learn to speak up for themselves to varying degrees. Young kids can learn how to ask, “Is this gluten-free?” or “Is this safe for me to eat?”  Let your child order for themselves in a restaurant and have them inform the wait staff that their food needs to be gluten-free. Even if you plan on discussing details with the waitress, manager or chef yourself (which I would advise in order to avoid cross-contamination), it is important for your child to get in the habit of always making sure people know that he or she needs to eat gluten-free.

If your child is old enough, test them to see if they can correctly name the gluten-free options on menus at restaurants by themselves. Teach them why they can’t eat certain things like french fries, which are deep fried in shared fryers with gluten-containing foods like breaded chicken fingers. Let them ask if there is a dedicated fryer or not. The older a child gets, the more they need to have these habits set in place. The more they practice, the more comfortable they will get with the necessary dialogue. Your child will be filled with pride as he learns these lifelong social lessons.

5.  Let it become their “normal.”

Find other gluten-free families that live near you. Get together. Let the kids get to know each other and play together on a regular basis, which might also mean snacking together — gluten-free. Get involved in a kids’ support group and the activities that go along with it. If you can’t find one, be your kid’s hero by starting one and making it happen.

If your child is old enough, let him attend a gluten-free summer camp. There are nearly 20 options in the U.S. alone!  How cool would it be for a gluten-free kid to be able to do all the regular camp activities with other children on the same diet, without anyone needing to ask if the food is safe or not?

Lastly, fill his or her bookcase with children’s books about being gluten-free. If your child loves dinosaurs or princesses, count how many books he or she has about them. On the other hand, how many books does your child have about being gluten-free — something your child is going to be for life? There are a bunch of great books out there now about celiac disease and being gluten-free. You can never have too many!  As they read the books, they will take pride in knowing that they are “just like” the main characters, which will help them feel understood and cherished. And consider all the people your child can share their books with — teachers, classmates, friends, relatives, etc.  What better way to help spread awareness than lending books? For kids, it doesn’t get any easier…

These empowering tips will take our children far by teaching them knowledge and positive social skills that will benefit them for a lifetime. The wonderful thing is that awareness of celiac disease and non-celiac gluten sensitivity is growing rapidly, which in itself is pretty empowering for all of us!

– Katie Chalmers