NOTE FROM ALICE
NFCA Executive Director
All of us have or have had Mothers...
unless any of you are "cloned." I'm
pretty sure I was born the old
Typically, Mother's Day is a time to give
Mom a day off! Mother's Day makes us
think of flowers, breakfast in bed, and
writing heartfelt cards. This is the one
day of the year that we celebrate good
old (or new) Mom. To commemorate
Mother's Day on May 11th, help someone become a mother!
Celiac disease can cause serious reproductive health problems
and yet many women (and their mates) with celiac disease are
out there suffering, unaware of the steps they can take for
healthy pregnancies. Some of you have spoken to me
about your difficulties becoming pregnant or have told me
heartbreaking stories of tragic loss. These histories often
bring tears of pain. But, we can heal ourselves and we can
help others heal.
Here is how! Help others become mothers and share your
story with the NFCA. (www.beyondceliac.org).
I want to reach out to you in any way I can. If you would
prefer to dictate your story to someone in the office, call us!
We want to hear from YOU!
Did you have infertility problems until you changed to a
gluten-free "lifestyle?" Have any of you become pregnant
after reading NFCA's DoIHaveCeliac checklist?
So, the world is changing. Celiac disease and a gluten-free lifestyle are
becoming main stream. We need to help our friends get diagnosed so
they too can restore their health, reclaim their lives and
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BEYOND RICE CAKES
LPGA Player Joins NFCA as Athlete for Awareness
By Vanessa Maltin
NFCA Director of Outreach & Programming
When I think about playing a round of golf, I picture sunny skies, beautiful green grass, crystal clear lakes
and the occasional sand trap. I think about breathing in the fresh air and hopefully finding the perfect club
to hit a hole-in-one. I think about good times on the course with family and friends and of course, the 19th
hole (aka eating and drinking after the round).
Although it would incredible to only have these warm and fuzzy thoughts about golf, people with celiac
disease have to be a little bit more careful and plan ahead. And that's exactly what LPGA Tour Professional
Sarah-Jane Kenyon does every day before heading to the golf course.
NFCA is proud to introduce a new member of our Athletes for Awareness Team.
As a spokeswoman for the National Foundation for Celiac Awareness, Sarah
will be sharing her story and keeping us posted of her gluten-free dining
experiences while on the professional golfers tour!
So, who is Sarah-Jane Kenyon???
Sarah is a native Australian and started playing golf at the young age of 12. She quickly
showed promise and by age 13 she was competing in tournaments all across Australia.
In 2002 she was the Australian Junior Champion and in 2003, winner of the
Queensland 72-hole Championship. She finished 10th in the 2004 Australian Open and
competed in the 2006 U.S. Women's Open Championship. Now, at 23, Sarah is
competing as a member of the LPGA tour.
Pretty impressive isn't it?! What's even more impressive is that she manages to keep up
with the rigors of the LPGA tour all while managing a gluten-free diet!
Sarah only recently began experiencing symptoms of celiac disease. Her symptoms
included gastrointestinal discomfort, headaches and severe fatigue, none of which
allowed her to perform at her best while on the professional golfers tour. Luckily,
Sarah knew what might be happening — her mother, Sharon, has celiac disease, so when the symptoms
appeared, it took no time at all to figure out the cause!
"I started feeling poorly whenever I ate ‘normal' foods, like bread and pasta," said Kenyon. "Since my
mother has celiac, I knew right away that I might be susceptible because the disease is genetic. Since I
started on a gluten-free diet, I've felt much better."
With a cure to her problems in place, Sarah is speaking out to help other athletes in the United States get
diagnosed and manage a successful gluten-free diet while on the go!
How does she do it?
Before Sarah knew what was causing her distress, she says she lived on Panera and Quiznos while traveling
to tournaments. Now she says she has to plan ahead. She always keeps fresh fruit, vegetables and rice cakes
with her on the golf course and says she is lucky that the LPGA tour organizers always keep healthy foods
on hand for the players to eat.
However, Sarah was sure to say that the United States is nothing like her home country of Australia.
"In Australia, there are tons of gluten-free options! There are bakeries and restaurants and even Starbucks
has gluten-free food!"
The bottom line she says, is that people in Australia truly understand the disease and in turn there are an
abundance of delicious gluten-free food options.
As the Athletes for Awareness Spokeswoman, Sarah will wear the NFCA logo on her apparel and golf bag
throughout the LPGA tour season and will work to promote awareness among fans and at events sponsored
by the NFCA.
Hopefully the gluten-free diet, coupled with support from the NFCA will help Sarah play even better golf!
To learn more about NFCA's Athletes for Awareness, read AJ Clemens' Personal Story.
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The Power of Cauliflower
By Chef Edgar Steele
NFCA Chef Spokesman
Restaurant menu development may be one of the most difficult tasks in the professional world due
to the balance between what the chef wants to feed you and what you actually want to eat. A chef
will come to the restaurant early in the morning, and walk through the refrigerator wondering what
to prepare for the days special, what changes to make on the dinner menu, or what the staff will eat
that day. It is common to target a main ingredient for any one of these answers, and, hailing at a
mere $3.00 a pound, cauliflower will prove to be a delicious, nutritious and budget-friendly
As a sometimes overlooked staple to any earth-shattering dish, cauliflower can be one of the best
tasting things ever placed in one's mouth and it is equally beneficial to the health-conscious the
whole way down. Semi-firm yet a bit spongy in texture at its raw state, and sinfully smooth when
cooked and pureed beyond recognition, either way you slice it, the tree shaped cauliflower can add a
creamy bump to a spectrum of dishes. In my experience at Café Atlantico, this seemingly modest
vegetable is grilled in steak-like form, pureed to a rich custard, and snipped into tiny pebbles and
sautéed amongst the finest of grains and starches.
At this mouth watering moment of despair, address of the healthy properties that cauli brings to the
table seems appropriate. If orange juice isn't your thing, a phenomenally high amount of vitamin C
is found in cauliflower. For those of us who with to avoid the dreaded cancers of the colon,
cauliflower gifts us with a natural source of sulforaphane and the compound indole 3 carbinole,
which has been found to slow down and in some cases even prevent the formation of harmful cells.
Enabling and assisting the liver to ward off harmful carcinogenic substances, cauliflower also aids
us as a detoxifier.
Cauliflower has also been linked to protection against rheumatoid arthritis and has several
cardiovascular benefits, due to its ability to fight against proteins which can cause plaque buildup in
To retain the maximum health benefits of cauliflower, it is best eaten raw, or lightly steamed just to
the point of being done. However, one may execute a number of cooking techniques to the
vegetable. In my experience, applications such as roasting, sautéing, grilling, steaming or frying work
very well to yield a tasty outcome. Butter and cauliflower turn out to have a magical bond when
married into a creamy puree.
Steam your cauliflower for about 10 minutes in a double boiler, and then puree it with approximately
9% of its weight in cream. For instance, if you are steaming a pound of cauliflower, puree it with
1.5 ounces of cream and a bit of salt. What you will have after this is something you may have never
expected from cauliflower… a fascinatingly smooth and creamy rich custard that you won't be able
to stop eating, so prepare yourself.
One of the many ways we consistently create amusement in our lives is to perform magic tricks, and
one of those is making things seem to be something they are not. Take a head of cauliflower, and
snip the tip. Continue to make small "snips" at the very edge of the cauliflowers head's surface and
you will have something that resembles small white pebbles. Prepare some of these snips, pack it
into a small cup and show it to a friend… tell them this is a new vegetable that you just discovered at
a distant market that comes from a distant land. 99% of people will believe it. Heat a little oil in a
sauté pan, add some shallots, garlic and salt, and cook those cauli pebbles and call it anything you
want to. This can be an interesting alternative to someone who wishes to refrain from a starchy diet,
and with varieties available in various colors of orange, green and purple will be pleasing to the eye
as well. The following recipes will expound on the vast usage of this miracle of a vegetable.
Cauliflower and Parmesan Soup
- 1 Head Cauliflower Leaves Trimmed and Discarded
- 1 Small Onion, Sliced
- 1 Clove Garlic
- 1 Bay leaf
- 2 Tbsp. Butter
- 2 1/2 Cups Water, and More as Needed
- 1/2 Cup Heavy Cream
- Small Basil Leaves
- 1 Cup Grated Parmesan Cheese
- Heat the butter over medium heat in a saucepot. Add the onion, garlic and bay leaves and
cook until golden in color.
- Cut the cauliflower head into uniform sized pieces and add it to the pot. Cook the cauliflower
for 5 minutes, stirring gently.
- Add the water, cream and parmesan to the pot, and bring to a simmer. Remove the pot from
the heat, and blend the soup until it is completely smooth and lump free in a blender. Adjust
the seasoning of the soup with salt, and the consistency with water.
- Place some of the soup in a bowl, and top it with some thin slices of parmesan cheese and
the basil leaves.
- 1 Head Cauliflower
- Extra Virgin Olive Oil
- 2 Tbsp. Diced Shallots
- 1 Clove Garlic, Sliced
- 1 Medium Sized Onion, Sliced
- Sea Salt
- Peel the outer green leaves from the cauliflower and discard. Cut out the core of the cauliflower
and discard. Cut a 3/4 inch slice from the center of the cauliflower, from stem end to tip. Using a paring
knife, score some small slices into the stem part of the cauliflower slice, going about half way
into the stem.
- Trim the tips from the remaining cauliflower florets, and chop into similar-sized "pebbles".
- Heat 4 tablespoons of oil over low heat in a small saucepot, and add the onions and a little salt.
Add enough water to barely cover the onions, and cook them until they are golden in color, about 45
minutes. Remove the onions from the oil and puree them in a blender. Adjust the flavor of the puree
- Coat the large slice of cauliflower with oil and sprinkle with salt, then place on a hot grill. Evenly
cook the cauliflower on the grill to achieve marks, and then remove the steak onto an oven-safe
metal plate. Place the cauliflower into an oven set at 350° F.
- Heat a tablespoon of oil in a sauté pan and add the shallots and garlic. Cook the shallots and garlic
until they are golden in color, and season them with salt. Add the cauliflower pebbles and briefly
sauté them until they are soft.
- Place a small amount of the sautéed cauliflower pebbles on the base of a plate, and drizzle some
of the onion puree over the plate. Remove the cauliflower steak form the oven once soft, and place
it on top of the sautéed mix. Sprinkle some sea salt over the steak, and drizzled some olive oil over
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Are You Ready for Summer?
Sending Your Celiac Kid to Camp
By Abby Schwartz,
This summer will be my daughter's fifth year returning to the same day camp. As a child, I spent
eight weeks of every summer at day camp, so when my daughter became too old to continue going
to her former preschool's summer program, I knew it was time to investigate "real" camps. The
accredited ones with sports and swim programs, arts & crafts and the ubiquitous "bug juice". I
wanted her to experience the same joys I grew up with, despite the fact that she has celiac disease.
What is different about camping for today's kids is that there is so much more awareness of food
allergies and intolerances. When I was a kid, there were jars of peanut butter sitting open on every
lunch table. Today, camp directors are much more savvy about meeting all types of special needs and
are willing to work with parents to ensure a safe and positive experience for all campers.
Each year, this is how my family prepares for a gluten-free summer camp experience. A few days
before the official season starts, our camp holds their annual "meet the counselors" day for campers
and their parents. Camp counselors, the nursing staff, and camp directors are all available that day to
meet parents and answer questions. The kitchen staff is also available for parents like me who show
up with paper and pen in hand, ready to ask questions and take notes about the menu items and
Prior to this visitation day, the camp mails out a packet of information, including the lunch menu
for the summer. In addition to a daily hot lunch, the camp keeps a selection of cold staples on hand,
including a full salad bar, cold cuts, fresh fruit and packaged yogurts. Each year, I review the menu
and make a list of all items that could potentially be gluten free. Here is a typical example:
- hamburgers and turkey hot dogs
- potato chips
- baked beans
- chocolate pudding
I know off the bat that rolls are off-limits. Everything else could possibly be GF, so I write it down
with the intention of researching brands and ingredients on my visitation day.
On the day we arrive to meet the counselors, I visit the camp kitchen and ask to speak with someone
in charge to go over the menu items. I strongly recommend alerting the camp in advance so they
have someone on hand to walk you through and answer your questions. For us, this has become an
annual routine, but one that bears repeating, as food vendors do change and menus are updated.
Walking through the camp kitchen, I look at ingredient labels on giant cans of vegetables, baked
beans, pudding, ketchup and more. I write down all safe items on my list. Next we visit the
refrigerated area, where I write down the names of the yogurts, cold cuts and salad dressings that
appear to be gluten-free. If there are any questionable ingredients (like modified food starch) I jot
down a note and include the brand name and any contact information I can find on the label so I
can do some Internet research back home.
Next up is the deep freezer, a walk-in torture chamber when you are dressed for summer (the
sacrifices we make for our kids). In the freezer are boxes of frozen hamburger patties, steak
sandwich meat, hot dogs, French fries and ice cream treats. Working quickly, I write down brand
names, check labels and gather the clues I need to compile my gluten-free list.
Back home, I mark up the camp menu, circling all items that are gluten-free. Some days it may just
be the canned corn, but other days (hooray taco Wednesday!) the entire lunch is gluten-free. Most
days my daughter prefers to create her own salad, complete with shredded cheese and a scoop of
canned tuna. We keep some bottled dressing in the camp refrigerator, along with a case of chocolate
Ensure (for backup). We also send in boxes of popsicles and ice cream treats, labeled with her name,
to be kept in the camp freezer for afternoon snack.
The good thing about camps is that they order food in bulk. That reduces the risk of an unknown
food item showing up unexpectedly, though there are days when the menu changes without notice.
For that reason, it is important to prepare your child and go over the food items together so he or
she knows what is safe to eat. There is also the option of packing a lunch. If you choose to do so,
make sure to arrange with your child's counselor to put the lunch in the camp refrigerator each
morning, or your child may end up with spoiled food (camp cabins are not air conditioned).
"What about overnight camp?" you may be wondering. Just as you would do with day camp, your
investigation of an overnight camp must begin with a conversation with the camp directors. Ask
how they handle food intolerances. Find out if they are able to make special meals for your child or
willing to keep several backup food choices on hand. Spend an afternoon visiting their kitchen to
review ingredients and brands, as I do for day camp.
Finally, you may want to check out one of the specialty camps for celiac kids that are popping up all
over the country. They are just a click away if you do an online search for celiac camps. Most range
in duration from a weekend to a full week. Some will allow you to send a non-celiac sibling as well.
These camps promise peace of mind and a sense of camaraderie for your child, as he or she meets
other celiac kids, perhaps for the first time.
As with any new adventure with your child, ask your questions, do the prep work, and enjoy watching your child take
a healthy bite out of life.
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Celiac Awareness Day at Phillies
Phillies host Celiac Awareness Day
The National Foundation for Celiac Awareness and the Philadelphia Phillies are working together to raise
awareness about Celiac Disease. Join NFCA and Celiac Groups in the Delaware Valley when the Phillies
play the Atlanta Braves on Sunday, July 27th at 1:35 PM at Citizen's Bank Park in Philadelphia. Gluten-free
food and beverages will be available at a designated concession stand.
Purchase tickets by logging onto phillies.com/celiac or calling 215-463-5000, extension 5304. Enter the code "CELIAC" on the website or mention it when placing a phone order.
Proceeds from those specially purchased tickets go to raising awareness of celiac disease and funds for
research. So, join the fun and help raise awareness of celiac disease. We can restore health and reclaim lives!
Download and Print Ticket information form (PDF, 290KB)
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Gluten-Free Traveling Made Simple
By Christina Gentile,
Does the idea of traveling while being on a gluten-free diet and far away from home make you
stressed, anxious or worried about what you will have to do in order to survive in a new
environment? Are you one of the many who calls hotel after hotel and restaurant after restaurant to
see if they offer gluten free menus before you go on vacation?
What if I told you that there is a way
to save time, relax, and reduce any
anxiety you may have while planning
your trip? Well I have excellent news
for you! Gluten Free Travel, LLC has
just launched a website that focuses
on travel reviews that provide different first-hand experiences about successful gluten-free traveling
in all over the United States, as well as different countries!
The reviews are personal accounts from different users who provide information such as gluten free
lodging experiences, gluten-free menu options and dining, the names of chefs that accommodated
the diet, suggestions of what foods to bring with from home and tips on how to order or find food
The website is www.glutenfreetravelsite.com and offers a multitude of resources right from the start.
And it is very easy to use! The home page gives an overview about the website and how it will help
you plan a trip. Their motto, Take a Vacation from Worry, is very appealing and makes you want to
dive in to see what they have to offer in order to reduce any extra planning or worrying. They offer
a link to search reviews of hotels, resorts, and restaurants from nine world regions. From there, you
can pick exactly where your travel spot would be and see what the area has to offer.
For fun, I searched in California and found reviews that were about a Bed & Breakfast that offered a
gluten-free menu, a Disney themed café that offered a variety of options from pizza to cake, and a
pizzeria that offered a gluten-free menu containing pizza, pasta, and meatballs.
You can search through the many reviews and find if your travel destination contains any helpful
reviews on dining or lodging. There is even an area in which you can submit a review if you have
any information to provide other travelers. The website offers a featured review where it currently
addresses the gluten-free successes on a Disney Wonder Cruise and every month they will highlight
a new featured location.
The site also has a section entitled "Travel Resources," which gives links, tips, and descriptions for
planning a gluten-free trip. There is information regarding an overview of trip planning and finding
information from a local Celiac association from where you are planning to travel, links for hotels,
resorts, cruises, and airplanes that have gluten free meals or menus available, and suggestions for
gluten-free restaurant books, grocery guides, cookbooks, and magazines.
Overall, the website is very interactive and informative. There are many travel reviews from all over
the world—the possibilities of traveling gluten-free seem endless according to this website! And
again, it is simple to use! All you have to do is click "search reviews", choose your geographic
location, and find all the relevant information you can!! There is even a place on the homepage
where you can join the e-mail list to get updates on featured hotels, travel offers, and restaurants.
So if you are one of the many people making plans this summer for a relaxing trip, a weekend
getaway, or traveling on business, make sure you go to www.glutenfreetravelsite.com to help plan
your trip and see what your destination spot has to offer! It is a clever tool that I know I will use
from now on when I plan any trips and I hope you do to!
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Celiac Rock Stars in Action!
On May 3, 2008, the National Foundation for Celiac Awareness partnered with Speaking Up For Women's
Health, a national non-profit, to participate in a day of awareness at Wal-Mart stores across the country.
NFCA volunteers were in more stores in more than 20 states distributing "Do I Have Celiac" brochures,
educating the public about both the disease and the gluten-free diet and showcasing Wal-Mart's many
gluten-free products. On this one day, thousands of people were educated about celiac disease and if it
results in even one new diagnosis, we will have been successful. Thank you to all the volunteers who
represented NFCA – you guys truly are celiac awareness rock stars!!!
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AWARENESS ADVOCATES OF THE MONTH:
The Kuhn Family
By Nancy Ginter
NFCA Director of Operations
What is an NFCA Gluten-Free Cooking Spree without the Kuhn Family?
NFCA has had the great good fortune to have Harriet and Adam Kuhn, along
with their sons Jacob and Abe, participate in three Gluten-Free Cooking Sprees.
Whether it be manning the Pamela's Products booth, the Bob's Red Mill table or
selling raffle tickets, this awesome foursome is always there to lend a helping hand.
While they may have attended the Sprees to enjoy the gluten-free food and the
camaraderie with the celiac community, they also helped to make each one of
them a success. Each member of the Kuhn Family truly is a fabulous NFCA
It's all because of Abe!
The entire Kuhn family has been involved in the celiac community and in
maintaining a gluten-free diet since Abe was diagnosed at age three. Looking back,
Harriet and Adam believe that Abe's journey with celiac disease began when he was
2 1/2 years old. Before that, he was a thriving boy in the 75th percentile for growth. Quite suddenly, he
began to display the classic symptom of celiac disease, including a distended stomach and anemia. As Adam
reports, "You could just look at this kid and know it." By Abe's third birthday, he was failing to thrive.
The Kuhns consulted with Paul Peebles, a pediatric gastroenterologist, who administered a blood test and
followed up with an endoscopy that determined that Abe had celiac disease. Their first reaction was to ask
"how do you spell that!" The next step was to learn that there were big dietary changes ahead for Abe and,
as a result, for his family.
The first stop on Abe's gluten-free journey was Trader Joe's where the Kuhns bought gluten-free egg-free
waffles. Abe ate waffles and never looked back. Thrilled, the Kuhns bought a case of waffles and started
learning about gluten-free food. After months of illness, Abe began eating voraciously and gained lost
ground. As time went by, more and ore good gluten-free products became available and life became easier
for this family.
Those familiar with celiac know that complications abound on the path to diagnosis. Abe had developed a
heart murmur as a result of his severe case of anemia. After adopting the new diet, this problem was solved.
Along the way, Abe and Jacob's pediatrician has become a strong advocate for celiac disease. In fact, Dr.
Dana Kornfeld also participated in the Washington DC Gluten-Free Cooking Spree!
The Kuhns maintain a gluten-free household. Harriet has adopted a 100% gluten-free diet out of solidarity
with Abe. While Jacob, age 7, and Adam are gluten-free at home, they do vary their diet when eating out.
Adam has become the family baker, specializing in gluten-free pizza and cakes. At school, the Kuhns keep
an eye on the menu and, to be safe, Abe usually takes his gluten-free lunch to school each day.
The Kuhns enjoy Washington's great restaurant scene. These days, there is much more awareness of celiac
disease and the importance of the gluten-free diet so eating out is easier than ever, Abe's favorite restaurant
is China Pavilion in Bethesda, MD. He loves the crispy beef!
The Kuhns are very active in the celiac community in the Washington/Bethesda area. They are members of
the Washington Area Celiac Support Group. Adam helps maintain the group's website and has managed the
300-member listserv for this group for six years. Abe is in grade 4 and looks forward to volunteering when
he is a bit older.
As a precaution, Jacob, age 7, was given the genetic test for celiac disease. It was negative. Nonetheless,
Jacob is a strong supporter of his brother as he manages his celiac disease. After all, this is a family affair!
Adam applauds NFCA's work in raising awareness of celiac disease. Adam would like to see a continuation
of awareness programs and an increase in testing.
The Kuhn Family enjoys the gluten-free culture that has developed over the past few years. As more people
are diagnosed, they know that the demand for gluten-free products will grow, generating an increased supply
of excellent products in all stores, including the small chains and health-oriented stores that the Kuhns
favor. Like many others, Adam would like to see the integration of gluten-free food into the mainstream of
Thank you to the entire Kuhn Family—Harriet, Adam, Abe and Jacob. See you at the next Gluten-Free