NOTE FROM ALICE BAST
NFCA Executive Director

With the holidays upon us, I want to start by wishing everyone a very happy holiday season!! I hope that everyone had a wonderful and delicious gluten-free Thanksgiving and that the food has digested!!

Here at the National Foundation for Celiac Awareness (NFCA) we’ve been hard at work. In November, NFCA attended the International Celiac Disease Symposium where we had the opportunity to meet with celiac leaders from around the world. We tasted the most delicious gluten-free foods and left the symposium with renewed hope that 2007 will be the year to get folks with celiac disease accurately diagnosed. I want to congratulate everyone at the Columbia University Celiac Disease Center, especially Dr. Peter Green, for putting on an incredible program.

During the symposium, I was personally overwhelmed by the hundreds of women I met who have experienced reproductive complications related to celiac disease. Being surrounded by women who understand the reproductive consequences of celiac disease was an empowering experience and one that will shape the future of NFCA. To start, the January issue of CeliacCentral will feature a series of articles about the link between celiac disease and reproductive health.

I’m also thrilled to let everyone know, that NFCA has receive an early holiday gift. CNN Newsroom Anchor Heidi Collins has signed on as our official spokesperson!! You’ll read much more about Heidi and the work she’ll be doing with us throughout the newsletter, but I wanted to again welcome Heidi to the NFCA family!

Happy Holidays!

Alice


ANNOUNCEMENTS

National Foundation for Celiac Awareness featured on CNN
If you missed the three stories on CNN, don’t worry! They are posted online at www.celiaccentral.org under Special Announcements.

Dr. Peter Green to be on Oprah & Friends
Tune in to XM Satellite Radio Channel 156 on Thursday at 7am, 1pm, and 7pm EST to hear Dr. Mehmet Oz interview Dr. Green about celiac disease. For more information, please visit www.xmradio.com.


BEYOND RICE CAKES

The Power of the Personal Story
By Vanessa Maltin
NFCA Director of Outreach & Programming

It gives me great pleasure to start this month’s Beyond Rice Cakes column by announcing that CNN Newsroom Anchor Heidi Collins has signed on as the official spokesperson for the National Foundation for Celiac Awareness. As I’m sure most of you have already seen on television, Heidi aired three stories on celiac disease during the month of November, bringing more than 200,000 people to the NFCA website and prompting more than 1,000 individuals to complete a celiac disease symptoms checklist to show their doctors. 


Not only is Heidi a world-renowned journalist, but she is alsowhat I would like to playfully call the Celiac Queen. Heidi is a woman, a wife, a mother and friend, and she manages to do it all with celiac disease—an accomplishment that is inspirational to all of us at the National Foundation for Celiac Awareness.

I was lucky enough to meet Heidi at the International Celiac Disease Symposium last month in New York City and was thrilled when she immediately knew all about Beyond Rice Cakes! Her first words to me were, “Oh my gosh, your book is on my kitchen counter!!” She LOVES the baked Brie and jelly recipe, and because of her glowing endorsement, it is featured as one of the December Recipes of the Month.

Over the last month, I’ve come to learn a great deal about Heidi, but the one thing that struck me the most is her incredible passion for helping people, especially those with celiac. When I first met her, I knew Heidi as a famous journalist that I saw on television every morning speaking to millions of people about world issues. But after spending hours talking to her about everything from gluten-free food and celiac to boys and beer, I learned that Heidi is exactly like all of us. She is a celiac and a friend with a powerful personal story.


Heidi’s journey with celiac disease began shortly after she finished graduate school and began her first television job as an anchor at a station in Wichita Falls, Texas. About one year after she started this job, she learned she was pregnant, news that thrilled both Heidi and her husband Matt. The couple kept the secret for quite some time, but finally six months into the pregnancy, Heidi announced on air that she would be having a baby.  Sadly, just a few weeks after announcing her pregnancy, Heidi lost the baby. She received very little explanation from her doctors about why the tragic loss had occurred other than from fetal demise.

During Heidi’s next television job in Colorado Springs, she developed a near fatal blood clot in her leg. After four months in the hospital and arterial bypass surgery, a vascular surgeon told Heidi she would never be able to have children. The doctor explained that her blood vessels would not be able to handle the strain of a pregnancy. Heidi and Matt were devastated.

Heidi’s next television job brought the couple to Denver, where after a lengthy search, they found a high-risk obstetrician who felt that having a child would not be impossible after all. Nine months later, two injections a day of blood-thinner and constant observation by a team of physicians, Heidi gave birth to her son Riley. She says it was the happiest day of her life.

However, Heidi continued to deal with stomach pains, severe headaches and anemia. The constant health issues grew nearly intolerable as she moved to CNN’s New York office. She continued visiting doctors until finally after 15 years of one health problem after another, her general practitioner diagnosed her with celiac disease. With one simple blood test, Heidi had found a diagnosis that would allow her to work toward a cure for her chronic medical conditions and an answer as to why her pregnancy had failed.

By becoming the official spokesperson for the National Foundation for Celiac Awareness, Heidi—just like many of you are doing already—will use her personal story to encourage millions of Americans to get tested for celiac.

Three days in November, Heidi stepped up to the plate and shared her story with millions of people on national television. My challenge to you is to do the same…maybe not on national television, but within your own community. Over the next month, tell your family and friends, your neighbors and co-workers, and even someone you meet on the elevator or bus about celiac disease. You never know…Taking the first step to discuss celiac disease could change someone else’s life.

For those of you who missed the segments she aired on CNN, please visit our website to view the clips. http://www.celiaccentral.org/News/CNN_Celiac_Stories/304/.

To share your celiac story with the National Foundation for Celiac Awareness, please visit www.celiaccentral.org and click on the Share Your Story box.

Lastly, to submit questions to be answered in next month’s Beyond Rice Cakes column, please email Editor@celiaccentral.org.

Sincerely,

Vanessa Maltin


RECIPES OF THE MONTH

Baked Brie & Jelly 
 
1 wheel of favorite brand of Brie cheese 
1/2 cup favorite flavor of jelly (cherry or blackberry suggested) 
 
1) Preheat oven to 350 degrees. 
2) Place Brie wheel on foil-lined baking sheet. 
3) Spread jelly on top. 
4) Bake for about 25 minutes. 
5) Serve with favorite gluten-free crackers or bread.


Lettuce Roll-Ups 

4 -6 large iceberg lettuce leaves (washed and dried) 
2 Tablespoon cream cheese (softened) 
1 Tablespoon hot sauce 
3 oz sliced deli turkey 
1 finely sliced or chopped tomato 
Salt, to taste 
Pepper, to taste 
 
1) In a small bowl, combine the cream cheese with the hot sauce to form a
smooth, pale brown mixture. 
2) Lay lettuce leaves on a large plate and spread a 1⁄4-inch layer of the
cream cheese mixture on top of one side of them. 
3) Add a few layers of turkey, then the tomatoes, then another few layers of
turkey (it sticks better this way). 
4) Add salt and pepper to taste. 
5) Roll the lettuce leaves from tip to stem to make a tube shape. 
6) Cut and serve. 


Ice Cream Delights
 
Frozen Peanut Butter Cups
2 easy peanut butter cookies 
1 scoop chocolate ice cream
 
Scoop ice cream onto flat side of one cookie. Place other cookie flat side down
on top of ice cream. Squish down to make a sandwich.
 
Mint Chocolate Gummy Dream
2 scoops mint chocolate chip ice
cream
1/2 cup gummy bears
1/2 cup hot fudge
 
Mix gummy bears into ice cream until evenly distributed. Drizzle warm hot
fudge and top with whipped cream and a cherry if desired. 
 
Frozen Mocha Caramel Latte
2 scoops coffee ice cream
1/4 cup walnuts
1/4 cup chocolate chips
1/4 cup caramel sauce
1/4 cup hot fudge
 
Mix walnuts and chocolate chips into ice cream. Top with caramel sauce and whipped cream. 
 
Raspberry Rocky Road
2 scoops chocolate ice cream
1/4 cup miniature marshmallows
1/4 cup pecans
1/4 cup fresh raspberries
1/4 cup raspberry preserves
 
Mix all together and top with whipped cream.


CLINICAL OUTLOOK

Alba Therapeutics raises $10 million for celiac pill

On November 27, Baltimore, Md.-based Alba Therapeutics announced that it has raised $10 million that will be used to expedite the development of AT-1001 to treat celiac disease.

Since the company was launched two years ago to commercialize the scientific discoveries of Dr. Alessio Fasano at the University of Maryland, it has raised roughly $42 million. Dr. Fasano is the founder of the University of Maryland Center for Celiac Research.

The latest funding comes in venture debt from a range of organizations including Atel Ventures Inc., Oxford Finance Corp. and SVB Silicon Valley Bank. This type of financing works as a term loan and generally serves a way for startup corporations to fund growth without being required to sell a portion of the company.

“The promising clinical and preclinical data generated with AT-1001 in celiac disease and other autoimmune conditions warranted that we access this capital in order to expedite activities supporting clinical trials," said Blake Peterson, the chief executive officer of Alba.  “ We now has the “ability to fast track the AT-1001 program to address the enormous unmet needs of celiac patients and others suffering from autoimmune diseases."

For more information, please visit: http://www.albatherapeutics.com


AWARENESS ADVOCATE OF THE MONTH

Dr. Ritu Verma, MD
Section Chief, Gastroenterology & Nutrition
Children’s Hospital of Philadelphia       

Have you been to a doctor who doesn’t believe that celiac disease exists?  Have you been told that celiac is still a rare condition that only affects children with big bellies? If this sounds familiar, than you probably haven’t been to see Dr. Ritu Verma at Children’s Hospital of Pennsylvania (CHOP).

Dr. Verma is the section chief of gastroenterology & nutrition at CHOP, so she sees plenty of patients with celiac disease, but unlike many doctors, she has a special connection to the disease…her two children have celiac. Not only is Dr. Verma an outstanding advocate for her two children, but for the entire celiac community.

We selected Dr. Verma as the December Awareness Advocate of the Month in hopes that you’ll share her story with your doctor and encourage medical providers across the country to take a more proactive approach to helping their patients cope with celiac.


Q&A with Dr. Verma:

Q: When do you decide to test pediatric patients for celiac disease?

A: When children are referred to the specialty physicians, it is generally because they have already been to a primary care doctor and are still sick. If a child presents with chronic abdominal pain, constipation and other gastrointestinal issues, I will test them for celiac. But I also take family history very seriously. If the family has a history of other autoimmune diseases, then I will definitely order a celiac test.

Q: What happens if there is a positive celiac diagnosis?

A: I will typically tell parents about a celiac diagnosis over the phone and immediately take three steps. The first is to set up a follow-up appointment for the child. Next, I schedule an appointment for the family with a dietician. And third, the family attends an in-office training session about celiac disease and how to manage a gluten-free diet. My staff and I developed the in-office training in order to help parents understand the lifestyle intervention in a very detailed way. We discuss the daily changes required for people with celiac disease and help families find ways to cope.

I also encourage the entire family to be tested since celiac is a genetic condition. I will personally write lab slips for all family members and refer them to the appropriate providers if the test comes back positive.

Q: How do you deal with kids who cheat on the gluten-free diet?

A: I yell at them!! But over the years, I’ve become much more tolerant of cheating because I’ve seen how difficult it has been for my own children to handle the diet. I really try to help parents find a way to teach their children that gluten-free cooking can be delicious!

Q: What advice do you have for parents of children with celiac?

A: I always tell them that celiac is the BEST disease their child can have. There are so many life-threatening diseases that children get, but celiac is so manageable. By simply changing a child’s diet, they become healthy. And, the most important lesson for parents to teach their children is NOT to feel sorry for themselves. Just because they can’t eat regular pizza doesn’t mean life is over. There are so many wonderful gluten-free options, so children should never feel like they are living without.

Q: What advice do you have for other doctors who treat children with celiac disease?

A: Celiac is the easiest disease to have and manage. You just have to give parents the right tools to help their children.


VOLUNTEER CENTER

Welcome to the new Volunteer Center at the National Foundation for Celiac Awareness (NFCA). My name is Michelle Ruddy and I am the new Volunteer Coordinator at the NFCA.  I have a degree in public health from the George Washington University and spent the last year teaching English in Korea. I hope to use my experiences, both domestically and abroad, to establish a volunteer program that is rewarding for everyone that signs up to get involved!

There are several ways that you can make a difference by volunteering your time and expertise to the foundation. Here are some of the options:

1. Share Your Story:
One of the most powerful tools that we have in the fight to raise awareness is the personal story of a celiac disease sufferer.  These stories tell the public—in a way that nothing else can—the impact that celiac disease has on an individual’s life, the struggle for a prompt and correct diagnosis, the discipline of eating a gluten-free diet and the challenge of daily life. 

So…tell us about your journey with celiac disease.  When were you diagnosed? Who diagnosed you? What was life like before and after you learned you had celiac? 

Some individuals have already submitted their personal stories and they are posted under the personal stories section on our website.  Read a few stories and become inspired to share your story with NFCA.

Please send your story to michelle@celiaccentral.org and check the NFCA website about a week later to see your story online at www.celiaccentral.org.

2. Gluten-Free Cooking Spree:
If writing is not your thing, but cooking is one of your great loves, do we have a volunteer opportunity for you!  Come partake in one of our Gluten-Free Cooking Sprees.

This event pairs together the medical and lifestyle aspects of celiac disease. Doctors, top chefs, and students are trained on gluten-free cooking.  Following their training, the doctors, top chefs, and students are partnered to compete in developing gluten-free recipes and preparing delicious results.

The Gluten-Free Cooking Sprees for 2007 will be held in several major cities. For more information, please email Vanessa Maltin at vanessa@celiaccentral.org.

3. Public Health Awareness Program:
If you’re interested in outreach, education, and advocacy you can assist with our public health education and promotion program.  This program focuses on informing individuals about the symptoms of celiac disease, while also raising awareness within the community.

If you would like to volunteer your time to any of the aforementioned programs, simply email volunteer@CeliacCentral.org.

If you have personal questions, please email me directly at michelle@CeliacCentral.org.  I look forward to hearing from you and can’t wait to work with you!

Sincerely,
   
Michelle Ruddy


KIDS CORNER

The November 2006 Kids Corner meeting was a great success!  This month, we featured a gluten-free cereal exchange. One of the participants, Carter Merenstein, demonstrated how to make gluten-free granola and shared his delicious recipe with the group. Carter’s involvement at the Kids Corner meeting is part of his Bar Mitzvah project, aimed at helping others through community service. Carter has elected to focus on raising awareness of celiac disease.

Carter’s primary goal is to help children who are newly diagnosed with celiac learn how to cope with their disease and to adjust to their new gluten-free lifestyle. One of Carter’s key initiatives is to compile a booklet with tips and advice for parents and children with celiac.

Carter has been collecting information from parents of children with celiac on effective ways to deal with various events kids attend today. Most events revolve around food including school parties, birthday parties, weddings, holidays, and more.  Please send tips, advice, and celiac stories to: K_stranz@hotmail.com to assist Carter with his Bar Mitzvah project. Plans to distribute the booklet to parents throughout schools in Bucks and Montgomery Counties (PA) are underway.

To read Carter’s story, go to www.CeliacCentral.org. Select “Do I Have Celiac” and then select Personal Stories.

The Kids Corner (Celiac) Support Group meets the third Sunday of each month from 1:30-3:00 p.m. at Abington Memorial Hospital, Lenfest Pavilion, Cafeteria Area, Room G, Abington, PA. This support group provides information and support to parents and children with celiac disease.

For more information about the group, contact Susan Hyer at sphyer@comcast.net.

CELIAC IN THE NEWS

Thanksgiving not wasted for celiac sufferers
A feature story on celiac from the Salt Lake City Tribune about how to eat delicious gluten-free food on Thanksgiving.

Celiac Disease:  it’s common, and commonly misdiagnosed
USA Today featured a story about celiac disease and the National Institutes of Health awareness campaign.

Alba Therapeutics raises $10 million
The Phoenix Business Journal featured a story about Alba Therapeutics raising $10 million to work on a pill to help people with celiac digest gluten.


CELIAC FUN FACT OF THE MONTH

Did you know that Marshmallow Fluff is gluten-free? Try using Marshmallow Fluff this holiday season to make desserts for your family gatherings! Everyone will love the fantastic creations and you can be rest assured that it is 100% safe for a gluten-free diet!

Marshmallow Fluff Recipes:
Available at www.marshmallowfluff.com

Never Fail Fudge
2 1/2 c. sugar
3/4 tsp. salt
1/2 stick butter or margarine
1 5.33 oz. can evaporated milk (3/4 c.)
1 7 1/2-oz. jar Marshmallow Fluff
3/4 tsp. vanilla
1 12-oz. package semisweet-chocolate pieces
1 /2 c. chopped walnuts

Grease a 9-inch square baking pan; set aside. In large saucepan combine first 5 ingredients. Stir over low heat until blended. Heat to a full-rolling boil being careful not to mistake escaping air bubbles for boiling. Boil slowly, stirring constantly, 5 minutes. Remove from heat, stir in vanilla and chocolate until chocolate is melted. Add nuts. Turn into greased pan and cool. Makes 2 1/2 pounds.

Peanut Butter Fudge
2 1/2 c. sugar
1/2 stick butter or margarine
1 5.33 oz. can evaporated milk (3/4 c.)
1 7 1/2-oz. jar Marshmallow Fluff
3/4 tsp. salt
9 oz Peanut Butter (creamy or chunky)

Grease a 9-inch square baking pan; set aside. In large saucepan combine first 5 ingredients. Stir over low heat until blended. Over medium heat, bring to a full-rolling boil being careful not to mistake escaping air bubbles for boiling. Boil slowly, stirring constantly, 5 minutes. Remove from heat, stir in peanut butter until blended. Turn into greased pan and cool.
Makes 2 1/2 pounds.


SUPPORT GROUP EVENTS

COLORADO:

Boulder-Longmont Chapter of CSA
Annual Holiday Cookie Exchange – Sunday December 3, 2006    2-4 PM
Niwot Grange (downtown Niwot, corner of 2nd and Franklin
Bring your favorite GF cookies (sets of 4 dozen each) for sharing.  Please bring copies of recipes and allergen information.
Contact:  nchutz@gmail.com

FLORIDA:

Palm Beach County Celiac Support Group
Our next general meeting will be January  9, 2007
Gluten Free Vendor Fair:  March 20, 2007
Contact: Phyllis Kessler  561-637-0396


GEORGIA:

Atlanta Metro Celiacs
January “Kick Off” Meeting

Saturday, January 13th, 2006
10:00am
Children's Healthcare of Atlanta (at Scottish Rite) in the Main Auditorium
Contact: Jennifer Harris at jdubreeharris@bellsouth.net

The speaker for our January meeting will be Vanessa Maltin, the director of outreach and programming for the National Foundation for Celiac Awareness (NFCA). She will share her personal story with celiac disease and discuss how her new book Beyond Rice Cakes is helping the foundation raise awareness across the country. Vanessa will also be bringing a special guest with her to the meeting: CNN Newsroom Anchor Heidi Collins. In November, Heidi became the official spokesperson for NFCA and will joining the foundation in their awareness projects nationwide. Luckily for our group, Heidi lives in the Atlanta area!! Together, Vanessa and Heidi will discuss the power of the personal story and tell you about some exciting opportunities to help get the three million Americans with celiac disease accurately diagnosed.


MASSACHUSETTS:

Celiac Support Group of Central MA

Meetings are open to the public and are held in April, September, and November.  Annual GF flour sale held each April. 
Contact:  Fallon Clinic Nutrition   508-852-6175
Or:          Linda                              978-874-2007

MASSACHUSETTS:

Celiac Support Group of S.E.N.E. meets January 21, 2007.  Mr. Ritt’s will be doing a product demo and sampling.  Attendees can pre-order.  Registration is at 1:30, meeting begins at 2PM.


NEW JERSEY

Southern NJ CSA Chapter #9 meets the first Sunday of each month, except July and August. 
December 3 – Cookie Swap and general forum. 
December 10 – Special meeting for Arico Natural Foods for a taste testing of potential new products.
Contact:  Bill -  celiac9@earthlink.net

NEW YORK:

Celiac Support Group for the Southern Tier Area meets the first Thursday of every month at St. Joseph’s Hospital in Elmira, NY in Ye Old Chapel on the 1st floor at 7PM. 
The Demember meeting will be sharing of recipes/food for the holidays.   Brring a favorite recipe to share!!  Kinnicknick foods will be sending samples!!! 
Contact:  Janet LaRue   607-565-3477 or email tjdd44@aol.com


OHIO:

Greater Cleveland Celiac Association CSA Chaper #50

The next meeting will be Sunday December 3, 2006
2 PM  at Parma community Hospital – Nelson Auditorium
7007 Powers Blvd (off Ridge Rd)  Parma
The topic will be Thanksgiving Potluck and Holiday Cookie Exchange
Bring your favorite recipes and appetites! Everyone will take home cookies and cookie mix from The Gluten-Free Pantry!!
This meeting is all about food, sharing recipes, and having fun!
For the Potluck – everything but the Turkey – Please bring a dish as well as the ingredients and copies of the recipe to share.  Suggested dish categories include, salads, casseroles, stuffing, vegetable, fruit, and dessert.

For the Holiday Cookie Exchange, please RSVP if you plan to participate.  Bring 3-4 dozen GF cookies that you have baked or candies that you have created along with 2-3 dozen copies of the recipe.  Bring an empty container for take home cookies.
Email Cindy with questions:  glutenfree1@yahoo.com

OHIO:

Akron Celiac Sprue Association and R.O.C.K. Support Group
SOS – Save Our Stomachs
We will be holding a family holiday pot luck dinner Sunday December 10, 2006  2-4 pm
Sunrise Assisted Living
101 N. Cleveland Massillon Rd.
Please bring a GF covered dish, along with copies of the recipe to share. 

SOS
We are tired of Starving On Sundays
Please RSVP to Therese Semonin 330-608-8436 or tsemonin1@neo.rr.com
There will be door prizes – the child count is very important!

OHIO:

Cincinnati Celiac Support Group
Annual Cookie Exchange
December 13, 2006 at 7 PM
Cincinnati Children’s Hospital – Room D2-28
Contact:  Denise Ramey@ 513-887-7153

TEXAS:

North Texas Gluten Intolerance Group
Meeting Saturday December 2 
Celiac 101 Class at 9 AM
Support Group Meeting at 10 AM
Richland Hills Church of Christ
6300 NE Loop 820
North Richland  Hills, TX

Annalise Roberts, author of “Gluten-Free Baking Classics”  will be our December speaker.  Annalise and her son have celiac and she is also sister to Claudia Pillow, our Market Street GF  chef. 
We will also have a GF Holiday Cookie  Exchange.  Please bring 2 dozen home baked GF cookies with the recipes to share.  Also bring a gallon Ziploc bag to take cookies home.

WASHINGTON:

Bellingham Gluten Intolerance Group
Holiday Cookie Exchange and Party
Tuesday December 5  from 7-9 PM
WECU Conference Center (north side of Holly and High Streets in Bellingham)
Bring 2 dozen GF cookies of your holiday favorite or store bought.  Please bring copies of the recipes.  Cookies are not required – all are welcome to come and visit.  This is an informal evening. 
Also: Holiday Shopping!!  Bring your checkbooks!!
Fabric “No Wheat” tote bags - $10, Triumph Dining Cards, Discounted subscriptions to “Living Without” magazine, Renew memberships before the year is out just $10 or join BGIG for $15
Contact:  www.glutenfreeway.info or 676-1372

Notice: Kelsey Langille’s presentation “Dealing with Food Intolerances in an Intolerant Society”  Wednesday December 20 from 7-8 PM  at the Community Food Co-OP

WYOMING:

Central Wyoming Celiac Association, CSA Chapter # 95
Thursday December 21, 2006 at 6:30pm
Thursday January 18, 2007 at 6:30PM  George Ovecka will report on the CSA/USA convention helod in October 2006
Thursday February 15, 2007 at 6:30pm
Thursday March 15, 2007 at 6:30PM


To post support group meeting information, please email editor@celiaccentral.org.

CONTACT INFORMATION

224 South Maple Street
Ambler, PA 19002
215.325-1306 main
215-283-0859 fax
info@CeliacCentral.org
www.CeliacCentral.org

Editorial Comments:
Vanessa Maltin
Editor@CeliacCentral.org