NOTE FROM ALICE
NFCA Executive Director
Can you imagine a world where all celiac sufferers receive a prompt
diagnosis? We are proud to say that, as of August 2008, we have
distributed over 700,000 of NFCA's very powerful Do I Have Celiac
brochures. We have helped thousands of people gain a prompt
diagnosis of celiac disease, and we have set the stage for improving
the lives of countless other Americans through training on all
levels for healthcare professionals and for the general public.
Can you imagine a world where you can go to the pharmacy and not worry about
the medication containing gluten? NFCA has formed a strategic partnership with
the American Society of Health-System Pharmacists to provide continuing education
to pharmacists about celiac disease and the gluten-free diet. Our next training
session takes place in Boston on September 12th. www.beyondceliac.org to sign up.
Just last week, a generous donor challenged us to raise $45,000 toward our educational
programs. Basically, he will donate $45,000 provided that we match his
$45,000 donation. And we have three weeks to accomplish our goal! We must
raise the money before our annual fundraiser "Appetite for Awareness" which is
being held on September 24th at the Wachovia Center in Philadelphia.
The Wachovia Center is the perfect place to hold this event because it is the place
where athletes come after they have ascended into the highest level of their sport.
And once they've come, be it the Flyers' Danny Briere or the the Sixers' Elton
Brand, they set their sights on even loftier goals...to be the best in the world!
NFCA has come here, too, as it grows into the premiere organization it its field!
What started out just 5 years ago as a dream with $1000 has grown into a major
change agent, making a significant contribution to the improved state of celiac
awareness, restoring health and reclaiming thousands of lives through proper training
At our gluten free extravaganza, 40 of Philly's top chefs and top docs will dazzle
your taste buds with this gluten-free iron chef-like competition. "Yummy! Sumptuous
Samplings! Come cheer on these chefs and docs! Disney is even flying in a
chef to judge this competition. Jason Smith, a Philadelphia 76er will be there with
his Fiancée Ashley to meet and greet all of you. So, come join the fun! And/or ,
please make a donation. www.Appetite4Awareness.org.
EVERY DOLLAR COUNTS TOWARDS OUR GOAL!
!We must raise the money by the 24th! With your help, the NFCA will restore health
and reclaim lives. Cheers and good health!
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BEYOND RICE CAKES
Are you Itchy?: Celiac Disease and Dermatitis Herpetiformis
By Vanessa Maltin
NFCA Editorial Director
We all hate to be itchy. Every time I get a bug bite, I scratch my skin until it bleeds because I can't stand the itchiness! But a bug bite is a small and almost inconsequential ailment compared to what many of us with
celiac disease have to endure if we're one of the few to experience Dermatitis Herpetiformis (DH), a
common complication of the autoimmune disease.
Intense blistering, burning, stinging and itching on the knees, elbows, scalp, back and buttocks are some of
the most classic symptoms. This all may sound really gross, but don't worry... DH is genetically determined
and is not contagious!
The name, dermatitis herpetiformis, is a descriptive name and is not related to either dermatitis or herpes,
rather it is a specific chronic skin condition. The rash may occur in the form of small lumps, like insect bites
and in some cases form fluid filled blisters. These small blisters are called vesicles. However, the rash may
appear hive-like, persisting in one area or another. DH can flare and subside even without treatment. When
the rash clears up, which it often does spontaneously, it may leave brown pigmentation or pale areas, where
pigmentation is lost.
Dermatitis Herpetiformis is diagnosed through a blood test and skin biopsy.
Who Gets Dermatitis Herpetiformis and how does it relate to Celiac Disease?
DH affects males more often than females and generally presents in adult life between the ages of 20 and
55. Although it is quite uncommon to find DH in children, cases have been reported.
Not all people with celiac disease develop dermatitis herpetiformis. According to the National Institutes of
Health, only about 20 percent of people with DH have intestinal symptoms of celiac disease. However,
Australian researchers say that biopsies show that 80% have some degree of villous atrophy.
How is DH Treated?
Like celiac disease, DH is treated with a lifelong gluten-free diet. It may take about six months to achieve
some improvement in the skin condition and up to two years or more to achieve total control by sticking to
the gluten-free diet alone. This means that the skin response is much slower compared to the healing of the
intestines with celiac disease.
Unlike celiac disease, there are a few other treatments for DH that can help relieve symptoms. The rash
symptoms can be controlled with medications such as dapsone. However, dapsone does not treat the
intestinal condition, meaning that people with DH must also maintain a gluten-free diet.
What are the Celiac Implications of DH?
The majority of patients with DH do not display any symptoms of bowel disease despite the fact that their
bowel biopsies are abnormal. They are said to have asymptomatic bowel disease. Both DH and celiac
patients not on a gluten-free diet have a small, but statistically higher risk of developing lymphoma of the
small intestine, particularly when the condition has been present for many years.
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The Best Gluten-Free Chocolate Chip Cookies...Ever
By Vanessa Maltin
NFCA Editorial Director
Gluten-Free Chocolate Chip Cookies
Last week I was inspired to make cookies. It has been a couple of weeks since I've done any baking,
mainly because I just needed a break after turning in the manuscript for my second gluten-free
cookbook to my publisher! The book is called The Gloriously Gluten-Free Cookbook: Spicing Up
Life with Italian, Latin and Asian Cuisine and is scheduled for release in October 2009. I'm VERY
VERY VERY EXCITED!!
But anyways, back to the cookies! I've had this recipe forever...it's a recipe that my grandma used to
make all the time but only with chocolate chips. I decided to turn the recipe into a gluten-free
alternative and spice it up with a few unique ingredients.
My version of the cookies are soft, chewy and buttery! Soooo delicious! I actually ate 4 of them
right out of the oven! I brought the cookies to the office the morning after I made them and
everyone (people with celiac and without) all agreed that they are the best cookies they have ever
tasted! The recipe makes a ton of cookies...about 3 dozen, so be sure to store them in a tupperware
container or wrap them well with foil.
Gluten-Free Double Chocolate Chip Cookies
Yields 3 dozen cookies
- 1 cup unsalted butter, melted
- 1/4 cup granulated sugar
- 1 1/4 cup dark brown sugar
- 1 egg
- 1 egg white
- 2 tablespoons non-fat vanilla flavored cream (ex. Coffeemate)
- 2 teaspoons vanilla extract
- 2 cups brown rice flour
- 1/4 cup cornstarch (can use potato starch if you want)
- 2 tablespoons tapioca flour
- 1 teaspoon xanthan gum
- 1 teaspoon kosher salt
- 1 teaspoon baking soda
- 1 cup semisweet chocolate chips
- 1 cup white chocolate chips
Preheat oven to 375 degrees F.
In a standing mixer, cream together melted butter, granulated sugar, brown sugar, whole egg, egg
white, vanilla cream and vanilla extract. Mix for about one minute.
In a separate bowl, mix together rice flour, cornstarch, tapioca flour, xanthan gum, salt and baking
soda. Mix well so ingredients are evenly distributed.
Turn the mixer speed to low and slowly add dry ingredients into butter/sugar mixture. Mix until a
smooth dough forms.
Add in semisweet and white chocolate chips and mix just enough to evenly distribute chips through
Grease a baking sheet and form dough into balls (about 2-inches in diameter). Bake for 13 minutes.
Cool before serving.
For more delicious tips and recipes visit www.BeyondRiceCakes.com.
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Rice Bran Oil: Is it Worth the Cost?
By Christina Gentile,
NFCA Volunteer Staff Writer
As an undergraduate Nutrition and Dietetics student, I usually get questions from family and friends
regarding different food items. Most often, the questions relate to what I like to call "the healthiness
factor." Spinach or romaine? Orange or grapefruit? Which is healthier? I always tell people that
proper nutrition involves a balance of different fruits, vegetables, grains, and healthy fats. When
they ask "which is the best," I describe to them the nutritional advantage each food item has. In
regards to the use of rice bran oil in one's diet, I will go over the nutritional components of the oil
and how it compares to some of the more popular oils used.
Rice bran oil has been regarded as the "world's healthiest" edible oil because it contains vitamins,
antioxidants, nutrients, and a healthy combination of fats. The antioxidant activity of the vitamins
and nutrients have the power to help lower cholesterol, fight degenerative diseases, such as heart
disease, diabetes, strokes, cataracts, and atherosclerosis, enhance the immune system, and destroy
free radicals, which are toxins that circulate in the bloodstream and promote disease. It is high in
Vitamin E tocopherols (which are more biologically active in our bodies) when compared to olive
oil, and is higher in total natural antioxidant activity than olive, canola, sunflower, soybean, and palm
oil. It also has a good balance of the healthy fats we want in our diets. These healthy fats include
Monounsaturated Fats, which help lower total cholesterol and raise healthy blood cholesterol, and
Polyunsaturated Fats, which contain essential fatty acids (our bodies need these) and is a source of
omegas. Another perk about this oil is that its fatty acid profile is closest to the recommendations of
the American Heart Association!
Rice bran oil has a delicate flavor, it is hypoallergenic (non allergy causing), and is very light when
used in cooking. The benefit of using a light oil is that less is absorbed into the food we cook in it,
which means a reduction in calories, lighter food texture, and money saved, all while still receiving
the health benefits as well as the great taste. In addition, rice bran oil has a very high smoke point,
which means it's perfect for stir-frying or deep fat frying.
After reviewing different literature about rice bran oil and its antioxidant activity, I think it is worth
the cost to use this oil. If you have a family history of high cholesterol or cardiovascular diseases, I
would recommend adding rice bran oil to your diet. A gallon of this oil costs around $18.95 from
California Rice Oil Company. It is similar in price to olive oil, depending on the manufacturer and if
you use extra-virgin or regular. If you are willing to pay the price for this oil, the health benefits are
Rice bran oil is versatile and can be used for stir-frying, deep frying, sautéing, baking, and to make
salad dressings or dipping oil. Below are three recipes adapted from the California Rice Oil Company
that can be made using rice bran oil. I have not tried the stir-fried vegetables yet, but I have
made the poppy seed dressing and dipping oils; they are very delicious! I hope you have the
opportunity to try this light and versatile oil and enjoy it in all of your cooking ventures!
Stir-Fried Vegetables: (Serves 4)
- 8 ounces extra firm tofu
- 8 dried shiitake mushrooms
- 1/4 cup dashi (make sure it is Gluten-Free!)
- 2 tablespoons reduced-sodium soy sauce (make sure it is Gluten-Free!)
- 2 tablespoons sake
- 1/2 teaspoon salt
- freshly ground black pepper
- 2 tablespoons rice bran oil
- 1 medium yellow onion; peeled, halved, and cut into thin crescents
- 2 medium carrots; trimmed, peeled, and diagonally cut into thin slices
- 1 medium Yukon gold potato (about 1/2 pound); diagonally halved, each half cut into 1/4-inch thick
- 1/2 pound string beans; trimmed and diagonally cut in half
- 1 yellow summer squash; trimmed and diagonally halved, each half diagonally thinly sliced
- 1 red bell pepper; cored, seeded, and cut into thin strips
- Rinse the tofu under cold water. Drain and cut into small dice.
- Place the shiitake mushrooms in a small bowl and add 2 cups of water. Let soak for 20 minutes.
Remove 1/4 cup of the mushroom soaking water (or 1/2 cup if making a vegetarian version) and
place in a small bowl. Blend in the dashi (omit if making the vegetarian version), 1 tablespoon of the
soy, the sake, and the salt. Add several grinds of pepper to this seasoning mixture.
- Drain the mushrooms; squeeze gently to remove excess water. Cut off the stems. Cut each cap
into thin slices.
- Heat the oil in a wok or large sauté pan over high heat. Add the onion and shiitake caps and
stir-fry for 3 minutes. Add the carrots and potato slices and stir-fry for 3 minutes. Stir in half of the
seasoning mixture and cook for 4 minutes.
- Add string beans, yellow summer squash, and remaining seasoning mixture. Continue stir-frying
the vegetables for 6 more minutes, or until the potatoes are cooked through and most (if not all) of
the seasoning liquid has evaporated. Add the tofu, red pepper, and the remaining tablespoon of soy.
Toss to mix, and stir-fry for 2 minutes. Transfer to a large serving bowl.
Poppy seed Dressing:
- 1/2 cup sugar
- 1/4 tsp. paprika
- 1/2 tsp. dry mustard
- 1/2 tsp. salt
- 1/4 cup cider vinegar
- 3/4 cup Rice Bran Oil
- 2 to 3 tsps. poppy seeds
Using blender at low speed mix first 5 ingredients. At medium speed drizzle in oil until thickened,
beat in poppy seeds, cover, and refrigerate.
- (1) Garlic Oil
- In a shallow dish or small plate.
- 1/2 tsp. fresh crushed garlic in center
- 1/8 cup rice oil poured over garlic,
- sprinkle a few drops balsamic vinegar
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Back to School: Sending Your Celiac Child to School
By Abby Schwartz,
NFCA Volunteer Staff Writer
It's back-to-school time, which means a new year of school lunches, classroom parties and field trips with
your celiac child. As a parent, what should you be thinking of as you send your child back to school? How
will you ensure that he or she eats only foods that are gluten free? The key, as always, is communication
A new school year means new teachers for your child. Just when you put all of that work into helping the
last teacher understand the challenges and solutions to living with celiac, you have to start over and teach
someone new, right? Yes and no. Here is where good communication comes in. If you are like most parents
of a child with celiac, you have made your school nurse aware of his or her gluten intolerance. Schools are
well aware of the need to share this information at the start of the school year and there is a good chance
that your nurse has already spoken with your child's new teacher, as well as the other teachers in that grade.
At my daughter's elementary school, our head nurse has a meeting with all of the teachers prior to the first
day of school, to inform them of any students' medical conditions, food allergies or intolerances. I make a
yearly habit of checking in with the nurse by phone or with a brief visit, a few days before the start of
school to make sure we are all on the same page. In that same spirit, I make sure to introduce myself to my
daughter's new teacher within the first few days of school, to give him or her a brief (more on that below)
explanation of celiac and how it will affect my daughter's experience at school.
Keep it simple.
Simplicity is a recurring theme in this column and it's worth repeating here. If you want your child's teacher
to work with you to ensure compliance with a gluten-free diet, you have to communicate clearly, simply and
give only the information he or she needs to know. Remember, your child is one of many under the
teacher's care, and that this person has a lot of other priorities to juggle as well. Giving too much
information will result in one of two things: confusion on the part of the teacher, or avoidance. For
example, instead of working with you to come up with a suitable substitute for a class treat, a teacher who
chooses to avoid the situation will simply leave your child out. The good news is that teachers are usually
more than willing to work with you to create a safe and happy experience for your child once they
understand what is being asked of them. Here is what I typically request:
- Do not give my child anything to eat aside from the food we send in, with the exception of fresh
fruit or veggies, or any food that we review together for safety.
- Give me advanced notice, when you can, of any classroom parties or birthday treats that will be
handed out. I will make sure to provide either a dish or dessert for the party or a gluten-free treat for
my child to eat instead of the birthday cupcakes.
- Call me with any questions, any time. If you are planning to make sundaes in the classroom, for
example, there are many brands of ice cream and toppings that are safe for my child. Most of the
time, by letting me know a brand or reading me an ingredient label, I can determine which foods are
safe and which to avoid.
I will hand the teacher a brief explanation of celiac disease to read over on their own. I let them know that
gluten is often hidden in foods under different names and that sometimes the manufacturing process is
where gluten comes into contact with food. This information lets them know that they should not assume a
food is safe if they do not see the word gluten as an ingredient. I also make a point of letting the teacher
know that accidentally eating gluten will not cause a medical emergency. Some of you may question why I
do so, thinking it best to leave the teacher with a greater sense of urgency with regard to the diet. While
people with celiac can often be very sensitive to even the smallest amount of gluten, we are very fortunate that our children do not have an anaphylactic reaction, as with peanut allergies. Our kids do not need to
carry EpiPens and their lives are not endangered by accidental exposure to gluten. Causing unnecessary
worry or panic benefits no one.
Many teachers have email addresses that they check throughout the day. I use email to speak with my child's
teacher, but I understand that she may not see it until the end of the day, so anything urgent is
communicated by telephone or through the school office. You can take advantage of all of your good
communication with your child's previous teacher, by enlisting his or her help in the new school year. Send a
simple note to the former teacher asking if he or she would be willing to answer any questions the new
teacher has about your child's gluten intolerance, and let the new teacher know they can always ask that
individual if they are unable to reach you. Find out from your new teacher how he or she prefers to be
reached and make sure they know how to contact you throughout the day as well.
We pack lunch and snacks. It saves money, I can control what I send in, and I do not need to worry that my
daughter will use her lunch money to buy unsafe or unhealthy food. For those of you who would prefer to
let your child buy lunch, communication is the key. Schools plan their menus in advance. Call the school
office and request to speak with the person in charge of the school lunch program. Explain that you would
like to set up a meeting to review the cafeteria menu so you can determine which foods are safe for your
child. It is unlikely that this person will know what gluten is or where it is found, but he or she encounters
children with food allergies all the time, and your request for more information is reasonable and not
uncommon. Arrive with pen and paper, review ingredient labels, ask questions about food preparation (are
fries coated with other ingredients? Are they cooked in the same oil as breaded foods?) and make a list of
the items your child can safely eat. Lunch periods are typically short, so asking for food to be specially
cooked for your child may not be the best solution, but it is likely you can find some everyday items to
supplement the food you pack, such as yogurt, milk, fresh fruit and bags of chips.
We lucked out at our school. My daughter's fourth grade teacher has celiac. Two years later, she still looks
out for my daughter and shares special treats with her. This year she told our new teacher that she was there
to help and that she has dibs on half of the treats I send in. It's going to be a good year.
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Traveling with Celiac: Tips for Eating on the Go
By Emily Freedner,
NFCA Staff Writer
We all know that finding gluten-free foods can be challenging at times, especially when you are in a
rush and just want to grab something quick. One of the hardest times to do this is when you are
traveling by plane. Airports are infamous for fast food chains and can seem daunting to a hungry
person with celiac. To top it off, there is nothing to look forward to on the plane since most airlines
no longer serve meals and those that have snacks, typically only have items that are not gluten-free.
Living gluten free, and being someone who loves to travel, I have found myself in this situation
many times. I want to grab a bite before I get on the plane, but I'm hesitant to walk up and down
the busy gates pondering menu options while lugging my carry-on baggage. Over the past year, I
have developed several tricks for traveling with celiac. Through trial and error, I have found that
bringing my own food is the easiest and most fool proof method to avoid eating gluten.
As we all know, restrictions for carry on items is ever-changing and the food service on many flights
(not that much of what was offered was gluten-free to begin with) has been eliminated. While you
can't get more than a 3 oz bottle of liquid through security, more and more people are carrying on
their own snacks, which makes it much easier for people with celiac to eat in the airport and on the
While I've never had a problem taking my snacks to the gate, if you are concerned, call ahead to ask
permission or bring along a doctor's note outlining your condition. Airline personnel should let you
through with your items, no problem. However, if traveling internationally, be sure to check the
food restrictions in your destination country before bringing too much food to the airport. Some
countries aren't willing to risk any type of contamination, especially with produce. So, if you happen
to bring a bag of apples to snack on during your trip, you may be forced to dispose of them when
you arrive. But, if you are traveling domestically, pack away!
When bringing my food along, I am a big fan of the hot/cold bag. This allows you to bring more
than just non-perishable items and it's easily rolled up and stuffed into the corner of a suitcase when
you are done with it. I like to bring plenty of sliced fruits and vegetables, a pre-made sandwich on
gluten-free bread, cheese, dried fruits, trail mix, and some rice crackers or gluten-free pretzels. You
can really bring anything that you normally enjoy, but beware of anything like yogurt that resembles
a liquid, because you won't get it to the gate. You will have to purchase drinks after you pass
In my opinion, bringing your own food to the airport is the best method, but we don't always have
time to prepare in advance and some people would rather not bother with the extra carry-on.
Although it might be a little more challenging, there are gluten-free options in most airports; you just
have to know what to look for.
McDonald's is a staple in almost every airport. No one will dispute that there is a lot at McDonald's
that you cannot eat. However, there are a few things that are ok for the gluten-free diet. For
example, you can order the fruit and yogurt parfait with NO granola. You can order a salad (be sure
to double check the dressing, scrambled eggs and bacon without the biscuit.
Wendy's offers a gluten-free southwest taco salad and an array of side orders like baked potatoes and
Chili's has bunless burgers; Caesar salad (without the croutons) and baked potato soup are great
options. If you can't make the distinction on your own, never be afraid to ask an onsite manager for
Whether you pack your own food or find what you can at the airport, be adamant about what you
are selecting, but don't ever let celiac prevent you from traveling! Eat well and enjoy your adventures!
To learn more visit:
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Costa Rica: Gluten-Free Hiking/Fun Adventure Week
November 23-29, 2008
Led by Eastern Mountain Sports Trek with celiac dietitian, Melinda Dennis of Delete the Wheat(r), LLC.
*Hiking, kayaks, rain forest walks, beaches, swimming, zip-lining, a week of all GF meals, and lectures on
nutrition and health for the gluten free lifestyle by Melinda Dennis, MS, RD, LDN
To register: 1-888-755-TREK or email: email@example.com
Space limited to 30. Open to those w/ celiac disease and gluten intolerance, and their family and friends!
FULL TRIP DETAILS: www.emstrek.com
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Boston Gluten-Free Cooking Spree
Watch top chefs and doctors compete to make the best gluten-free meals!!
- 10 of Boston's Top Chefs
- 10 doctors from various Boston hospitals
- 10 medical support staff (nurses, physician assistants, pharmacists & dietitians)
*VIP Tickets include VIP goodie bag, an autographed copy of Beyond Rice Cakes and a $50 tax deduction.
The National Foundation for Celiac Awareness and CNN Newsroom Anchor Heidi Col