NOTE FROM ALICE
NFCA Executive Director
When I travel, I find that I am a student of culture. And through my
dining experiences, I get the best view of past and present. I just
visited Turkey and found that this is a culture where there isn't "food
arrogance" or "know it all attitudes." Amid the lost ruins, the varied
architectural splendors, the mosques, the palaces, and the Bosphorus,
Istanbul is a gastronomic delight especially for celiac sufferers. Not
only is there a great deal of naturally gluten-free food, but also I
found that the restaurant staff was truly responsive to my needs.
Supposedly, Turkish food is one of the world's top five best
cuisines. The complexity of Turkish food stems from the Ottoman Empire
where many dishes were introduced from conquered lands. The Greek,
Turkish and Arabic cuisines are woven together to create a varied
eating experience. Typical dishes include delicious kebob meatballs
stuffed with walnuts, fish and lamb poached in olive oil, fresh
anchovies, sardines, striped sea bass, and turbot. The city is known
for its midye dolmasi; mussels stuffed with rice, raisons, pine nuts
and many herbs including cinnamon, allspice, pepper, paprika, and
I most enjoyed eating the fresh nuts and dried fruit. One could not
walk down a street without finding a rug dealer, Turkesh delight
(candy) and stores brimming with "freshly picked" nuts and dried fruit.
Pistachio's, hazel nuts, cashews, almonds, figs, apricots, and dates
were all out of this world!!!
At every meal, I easily navigated the menu. Of course, there are a few words that every celiac should know:
- Wheat, Rye and Barley = Tahil
- Flour = Un
- Bread = Ekmek,
- Pasta = Makarna
A great start to the New Year! For 2008, I am hopeful that you will
join us for one of our Gluten Free Cooking Sprees and help us to raise
the "bar"— "Gluten Free with a Smile."
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BEYOND RICE CAKES
A Celiac Pill: Alba Calls for Participants to Test Effectiveness of AT-1001
By Vanessa Maltin
NFCA Director of Outreach & Programming
Do you dream about being able to eat pizza, pasta, cookies, cake and
all of your favorite gluten-containing products again? The first year
after being diagnosed with celiac disease, I remember wandering up and
down the aisles of the grocery store just wishing I could buy the same
old products as before I had to be on a gluten-free diet. They were
cheaper, tasted better and were easier to find. Even though I've been
gluten-free for over four years and am a pro at managing my lifestyle,
I still find myself having moments where I wish I weren't on the
diet...especially those times when I am inadvertently exposed to
Over the last year, the National Foundation for Celiac Awareness has
surveyed thousands of celiac disease patients about items that are
important to them in order to determine what new developments would
make their gluten-free lifestyle easier to manage. As I'm sure you can
guess, the most common response was: a pill that would allow the body to safely digest gluten.
most of us with celiac disease, a pill would represent a dream come
true. At this time, there are no drugs in the pipeline to allow
patients to eat a normal gluten-containing diet. However, a dynamic
group of researchers at Baltimore-based Alba Therapeutics
have developed a pill that is expected to protect celiac patients
against a small amount of gluten. How much you ask? Only about 2.5
grams, which is equal to roughly one slice of bread. Essentially, it
will protect against inadvertent cross-contamination.
Right now Alba Therapeutics is recruiting participants for a Phase
II clinical trial of AT-1001. The study is examining three doses of the
drug for efficacy and safety for treating celiac disease. The goal of
the study is to show that AT-1001 can prevent intestinal damage when a
patient undergoes a six-week gluten-challenge.
BUT...just because you're on the drug while participating in the
study, doesn't mean you can eat all of the gluten you want for six
weeks! The researchers will provide you with a kit that contains gluten
capsules for you to swallow. This allows the researchers to control the
exact amount of gluten intake and determine appropriate dosages of
Are you confused? The first time I heard all of this, I was, so lets take a step back and understand the basic science.
The Science of Celiac:
Before you can understand what goes wrong in celiac patients, you have
to understand the normal digestion process. When a healthy person eats
food, it travels to the small intestines where it is absorbed into
cells and broken down. Once the food particles are processed in the
small intestine cells, the cells release the nutrients into the blood
stream where they are absorbed and used by the body to function.
However, between the cells we have what are known as "tight junctions"
These are actually dynamic gates that open and close. When a person
with celiac disease eats gluten, the food travels into the small
intestines, but accidentally slips past the cells through the gates. We
commonly call this "leaky gut" syndrome because the gut is leaking out
the gluten protein before it has a chance to be processed and digested.
This is toxic for a person with celiac disease.
When the gluten particles leak through these gates, they directly
enter the gut wall. In celiac patients, this causes an immune system
response, which produces antibodies. (NOTE: These antibodies are what
are measured when a patient has a celiac blood test, and are called
anti-tissue transglutaminase or anti-tTG.)
How can AT-1001 Help?
Last week I spent the day with Alba's Senior Vice President for
Clinical Development and Medical Affairs Dr. Betsy Van Parijs. She very
eloquently explained the theory of how this investigational drug works
and helped convince me that data so far have shown that the drug is
well-tolerated in celiac patients.
AT-1001 is a peptide, which means that it consists of natural amino
acids that are protein fragments). When you ingest it, the gut sees it
as if it was a natural matter and breaks it down. This means that it
gets broken down rather than absorbed into the gut wall. This is good
news and explains why there have been no reported serious or severe
side effects of the drug.
AT-1001 works like a topical ointment in the gut that coats the
inside of a patient's small intestine lining. This prevents a small
amount of gluten from passing through the "leaky gates" and prevents
the gluten toxins from entering the gut wall.
Why Can't You Eat All the Gluten In the World?
Even while taking AT-1001, patients can only eat 2.5 grams milligrams
of gluten per day. According to Dr. Van Parijs, celiac patients might
never be able to eat a piece of pizza or a plate of glutinous pasta,
largely because scientists can't change genetics. All they can do is
try to control the effects.
Try thinking of it in terms of high cholesterol. Patients with high
cholesterol are commonly prescribed a drug called Lipitor. They are
told to take the drug in conjunction with a low-fat diet and exercise.
Lipitor helps reduce the cholesterol, but can't control it without the
added change in diet and exercise.
So, for celiac patients, the same theory applies. AT-1001 will help
digest a SMALL amount of gluten—about the amount in accidental cross
contamination, but in order to remain healthy, you must still attempt
to adhere to a gluten-free diet.
The bottom line is that if AT-1001 works as Alba expects it to, the
drug will help prevent long-term complications for sure and provide
short-term relief if you accidentally consume gluten. However, the
clinical trials to investigate this and other effects of AT-1001 are
ongoing, and no conclusions about the therapeutic effects of the drug
can be made in advance of the results of the trials
What Does the Clinical Trial Involve?
Alba is looking for biopsy-confirmed celiac disease patients to
participate in a phase II clinical trial to test the effectiveness of
AT-1001. To participate in the study, patients must be 18-72 years old,
diagnosed with celiac disease for more than six months and have been on
a strict gluten-free diet for at least six months. In addition,
patients must have a negative anti-tissue transglutaminase (anti-tTG)
If you visit a study site, you will speak with a nurse who will walk
you through the process of the trial. The nurse will explain that you
will need to submit a urine sample and undergo other types of testing
during the six-week study. You will be asked to sign a consent form.
Once you've given your consent to participate in the study, you will
have a screening visit to be physically examined. All of your vital
signs will be checked and then the blood test for anti-tTG will be
done, and the biopsy report from a previous exam will be reviewed. If
all of your test results are within the acceptable ranges, you will be
enrolled in the study.
At this point you will be given a kit that contains either AT-1001
or the placebo. It is a double blind, randomized study, so you will not
know which kit you have. You will also receive tablets that contain
gluten. You will be instructed to take both the study drug and gluten
pills three times per day, one pill approximately 15 minutes before you
eat a meal and two pills along with your meal.
Once you begin taking the drugs, you will need to return to the
clinic for further testing and procedures and fill out daily diary on
an electronic device like a PDA monitoring how many pills you take each
day and if you experience any form of discomfort.
The entire duration of treatment for the study is six weeks. After
the six week period, you will return to the study clinic one week later
for follow-up to determine if you had any unforeseen side effects.
Are there Dangers to Participating?
AT-1001 study does involve a placebo group. This means that it is
completely random whether you receive the active medication or a
placebo pill. Both patient groups ingest gluten tablets, but according
to Dr. Van Parijs, the risk of long-term complications is low, because
the amount of gluten is so small and it is for a very short period of
time compared to a lifetime of ingesting gluten.
She cites supportive medical literature suggesting that ingesting
2.5 grams of gluten per day "over a period of six weeks is not
sufficient enough to cause long-term damage." She notes that it will
produce mild or moderate side effects such as diarrhea, constipation or
bloating related to gluten ingestion, but generally "not to an
Dr. Van Parijs says the researchers at Alba think daily about the
Hippocratic oath they took to become doctors and can say confidently
that they are "not harming our patients " by asking them to eat gluten
during the study. However, as in all clinical trials, there may be
unforeseen side effects. Please seek additional information about
potential risks before participating.
How to Participate in the Trial:
To participate in the trial, you must be:
- Age between 18 and 72 years
- Diagnosed with celiac disease for more than 6 months
- Negative anti-tissue Transglutaminase
- On a gluten-free diet for at least six months
- BMI between 18.5 and 38
Exclusion criteria—You may NOT participate if you are any of the following:
- Current smoker
- Has chronic active GI disease other than celiac disease (ex. Crohn's, Colitis)
- Has Diabetes
- Unable to abstain from alcohol consumption for 48 hours prior to each intestinal permeability collection
- Unable to refrain from consuming non-steroidal anti-inflammatory agents for 48 hours prior to intestinal permeability collection
- Participated in any clinical drug study within the past 30 days or has had previous exposure to AT-1001
- Presents with or has a history of dermatitis herpetiformis.
If you are interested in participating, please contact: [email protected] or call Alba Therapeutics directly at 1-877-415-3282. There are currently 23 study locations nationwide.
One last note...
The work that Alba is doing is absolutely fascinating, so take a few
minutes to watch our interview with Dr. Van Parijs and listen to all
she has to stay about the drug and the study. Then take a look at their
website for even more information! www.albatherapeutics.com.
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LIFESTYLE & EDUCATION
National Foundation for Celiac Awareness Merges with The Celiac Site
Joint efforts will increase hospitality industry training on national level
By Vanessa Maltin
NFCA Director of Programming & Communications
January 7, 2008–In an effort to advance gluten-free
training and education on a national level, the National Foundation for
Celiac Awareness (NFCA) is thrilled to announce that it has merged with
The Celiac Site. Together, the organizations will operate cohesively to
inspire all kitchens, whether it is a bistro or cafeteria to provide
gluten-free meals that are safe, healthy and delicious.
Celiac Disease is an autoimmune digestive disease triggered by
consumption of the protein found in wheat, rye, and barley. The only
treatment known for celiac disease is 100% elimination of gluten from
the diet. NFCA is a 501(c)(3) non-profit organization dedicated to
raising awareness and funding for celiac disease that will advance
research, education and screening amongst medical professionals,
children and adults. The foundation works with all medical specialties,
chefs and the public to spread awareness and provide resources to those
living with celiac disease. Through a multifaceted campaign, including
media outreach, the Gluten-Free Cooking Sprees, a video series,
cookbooks, the Do I Have Celiac brochure and a variety of other
projects, the foundation has reached hundreds of thousands Americans.
With the merger, the NFCA' s reach will expand exponentially. The
NFCA's effective awareness campaigns are helping to drive up the
numbers of diagnosed. With more and more needing gluten-free meals,
more services will need to be provided. Therefore, awareness of the
disease must be complemented by awareness of a proper treatment – the
The Celiac Site is home to the Gluten-Free Yellow Pages and the GREAT
program. The Gluten Free Yellow Pages is a portal for the gluten-free
community to learn about the wide variety of products available. The
GREAT program (Gluten-free Resource Education Awareness Training) is a
gluten-free kitchen protocol-training program for chefs, kitchen
operators, dietitians, and restaurateurs who would like to correctly
serve gluten-free food. The goal is to provide widespread gluten-free
education for those in the restaurant and hospitality industries
including school and health care facilities. GREAT is already an
ongoing credit provider for the American Dietetic Association and is
pursuing other programs, as well.
With the merger, The Celiac Site's Nancy Baker will become part of
the NFCA team. With her expertise in education she will take on the
role of NFCA Director of Education. In this position, Nancy will
continue to manage and administer all components of the GREAT program, as well as oversee the NFCA school lunch program, an area in which she is a highly trained.
The website will soon be integrated into the NFCA www.beyondceliac.org portal.
"I have enjoyed a cooperative relationship with the NFCA for over a
year," Nancy said. "Using their skills and expertise, I am confident
that we will move the programs launched in The Celiac Site from start
up to national awareness."
NFCA Executive Director Alice Bast said she is "thrilled to have
Nancy Baker on board" and is "eager to get started with training a
dynamic group of chefs in 2008."
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EDUCATION & AWARENESS
2008: A Year for Gluten-Free Education – The Food is the Cure
By Nancy Baker
NFCA Director of Education
The National Foundation for Celiac Awareness was founded with two
main objectives in mind: awareness and education. Over the last four
years we've found that the only effective method of education is to
make people keenly aware of a particular issue. The only way to change
the behavior of the medical and hospitality industries is to offer
comprehensive educational opportunities. This is our continuous goal
for 2008. To enhance the programs that are already in place and expand
their reach to new professionals free of charge.
Learning, by definition, is the acquisition of knowledge about a
topic. For our purposes, education is helping doctors understand how to
diagnose celiac disease and how to help their patients manage a
gluten-free diet. For chefs, education is understanding the gluten-free
diet and cooking safe food for their celiac customers.
In 2008, NFCA will continue to re-acquaint doctors with celiac
disease, not just those who are gastroenterologists, but those who
treat patients diagnosed with associated diseases such as autism,
diabetes, cancer, osteoporosis, etc. In addition, NFCA will expand its
chef training efforts to restaurants nationwide through the GREAT
GREAT: Gluten-Free Resource Education Awareness Training, is the
NFCA's nutrition education program. The program provides comprehensive
gluten-free kitchen training to restaurants, chefs, dietitians,
nutritionists, resorts and school cafeterias. The NFCA will provide
this program initially through the Gluten-Free Cooking Spree
and then to additional institutions as requested, all free of charge.
Through individual opportunities at conferences, seminars, and by
special request we look forward to providing an up-beat and accurate
toolbox for creating safe gluten-free meals.
With the GREAT program, the Gluten-free Cooking Spree will
become more than a signature fundraiser, but a chance to permeate the
entire community with training. At each event we will continue to
target influential professionals and individuals to be ambassadors of
knowledge. We will equip chefs, doctors, dietitians, and members of the
media in each city with the knowledge to diagnose and treat patients.
Each will be trained in the gluten-free protocol.
We are excited to move forward with our 2008 plans and are devoted
to doing it right... and of course with a great deal of creativity.
Are you a restaurateur, chef, or dietitian looking for more
information or leverage? Get in contact with our new Director of
Education Nancy Baker at [email protected] or [email protected].
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What's for Dinner?
By Abby Schwartz
My daughter is 11 and has celiac disease. My husband and I do not.
When it comes to making dinner, my mantra is K.I.S.S., or Keep it
Simple & Substitute. When you have a child who is on a gluten-free
diet, you don't have the luxury other families do of simply stopping by
your local supermarket and picking up a meal from the prepared food
aisle. Cooking becomes a necessity, one that took me several years to
tackle without stress. Nowadays, I enjoy cooking for the three of us,
and can pass on the following tips for other celiac parents.
As a working mom, I would often find myself looking at my watch at 6:00
pm wondering what my family would eat for dinner. The most typical
meals were thrown together last minute and fit more into the junk food
category than anything nutritious. All of these meals lacked in
variety. However, once I developed the habit of planning ahead, dinner
became much easier, tastier and healthier for our whole family. I even
(gasp) started to enjoy cooking.
Here's how I do it:
On Sunday mornings I make a list of meals for the week, Monday through
Thursday (Friday nights we order in from our favorite Chinese or
Italian restaurant). Where do I get my ideas? Several places. I start
with the basics and build from there. For example, a typical week's
menu may start like this: Monday: chicken, Tuesday: pasta, Wednesday:
fish, Thursday: ground turkey. From there I get more detailed. Chicken
becomes chicken Parmesan. Pasta becomes baked ziti, and so forth. I get
recipes from cooking magazines like Cooking Light, by scanning my local
newspaper and most often, from cooking web sites like cooks.com or
epicurious.com, where you can search by main ingredient. You can also
find a variety of gluten-free recipes at www.beyondceliac.org. Once I have my menu for the week, I can make a shopping list and I am good to go.
Keep it Simple.
In my family, all meals that I cook are gluten-free. Some families opt
to cook up a separate pot of gluten-free pasta for the one child in the
family who is a celiac, while the rest of the family eats "regular"
pasta. Having just one child, I do not have to deal with issues of
keeping things fair amongst siblings, so we eat the same food as a
family. For one thing, it validates for my daughter that gluten-free
food is just as good as other food, if not better. More importantly, it
makes her feel good that (to borrow from High School Musical) "we're
all in this together."
Do my husband and I ever eat gluten-containing foods in front of
her? Sure. Remember those Friday night take-out meals? We order what we
want, she orders what she wants and everyone is happy. Especially me,
because I have the night off. Keeping it simple also means not
reinventing the wheel. We keep a list of our favorite meals on the side
of our refrigerator and it is a great reminder to draw from when
writing up our weekly menu.
I have nothing against gluten-free cookbooks, particularly when it
comes to making bread and pizza dough and pie crusts—foods in which
gluten ordinarily plays a critical role, and alternative flours and
stabilizers are required. But for everyday meals, I find that any good
recipe source will do. When cooking gluten-free, recipes generally fall
into one of three categories: fine as is, fine as long as a specific
brand of ingredient is used (for example, a Worcestershire sauce that
you know is GF), and fine with the substitution of one or more
ingredients with their gluten-free counterparts (like breadcrumbs or
pasta). It is surprisingly easy to cook gluten-free once you have a few
key substitute ingredients on hand. I recommend pastas in different
shapes (my favorite brand: Tinkyada), flour for dredging or thickening
and breadcrumbs. (See my special recipe, below.)
One final thought: what works for cooking in general, works for
cooking gluten-free. Use fresh ingredients, season your food using a
variety of herbs and spices, use good olive oil, and don't be afraid to
Want to contribute to our upcoming What's Cooking database? Send your favorite recipe to me at [email protected]
and I may include it in a future recipe section on the NFCA web site.
Use the word recipe as your topic (no attachments, please).
Ultimate GF Bread Crumbs
When I cracked the code to making the ultimate breadcrumb, a world of
recipes formerly off-limits to our newly gluten-free lifestyle,
suddenly became ours to use. And use them we do: veal parmesan, crab
cakes, casseroles with a buttered crumb topping, and the best chicken
fingers on the planet. The secret? Instead of using bread (which always
tasted too sweet and came out too soggy) I use crackers. I buy the
rectangular crackers that look like Saltines; the ones that are made by
Glutino and by EnerG (slightly different crackers, but either works
very well). I buy them by the case and grind them into crumbs in my
food processor. Then I season them liberally with dried seasonings:
salt, pepper, parsley flakes, onion powder, garlic powder and basil. I
mix them well and store in an airtight container until needed.
Sometimes I will add ground cayenne pepper or dried tarragon for a
specific recipe, but the basic mixture above is my go-to Italian
breadcrumb for anything breaded or crumb-topped. Here is my recipe for
the best chicken fingers on the planet:
Best Chicken Fingers on the Planet
- boneless, skinless chicken tenders, rinsed and strip of cartilage removed
- rice flour seasoned with salt and pepper (put this in a shallow dish)
- 2-3 large eggs, lightly beaten (put this in a separate shallow bowl)
- GF bread crumbs (use recipe above—place these in a third shallow bowl)
Form an assembly line of ingredients, as listed above. Dip chicken
pieces first in flour mixture, shaking off excess. Coat them next in
beaten egg, followed by a good dredging in the bread crumbs, making
sure to get both sides. In a frying pan, heat good olive oil or
vegetable oil on medium heat. When oil is hot, carefully add chicken
and cook each piece until golden brown and crispy. Do not immerse
chicken in deep oil—a coating to 1/8-inch will do. Wait to flip chicken
until one side is nice and brown. Add more oil, if needed. After
removing chicken from frying pan, immediately season with salt and
freshly ground pepper. Enjoy!
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RESTAURANT RANTS & RAVES
Lilit Café: How a Small Cafe Went Gluten-Free
By Stefanie Kleinman
NFCA Volunteer & Awareness Coordinator
Gluten-free sandwiches, pizza, and crab cakes, OH MY! That is the
typical reaction when a person on a gluten-free diet walks in the door
of Bethesda's Lilit Café. Not only does this small, family-owned café
have some of the most delicious gluten-free food items, they also have
Redbridge beer to wash it all down.
Lilit has become a famous, must-visit restaurant for the Washington,
D.C.-area celiac community. They are best known for their incredible
gluten-free pizza and sandwiches as well as amazing gluten-free
desserts supplied by Sweet Sin Bakery. I spoke with owner Davinder
Singh about the challenges of starting and maintaining a gluten-free
institution. Here's what he had to say:
Davinder took over Lilit Café, then a little sandwich shop, in
January 2007 and immediately started offering gluten-free options. He
is good friends with the owners of Sweet Sin Bakery, Richard and Renee,
and had observed Renee, who has celiac, struggling to dine out on
several occasions. He wanted his restaurant to have options for her and
other celiacs so he started carrying the Sweet Sin desserts. Every few
months, he would add another gluten-free item to his menu. First came
the sandwiches and then the pizza. At the start of 2008, Davinder
launched his latest gluten-free creation: gluten-free crabcakes! And he
spilled the beans that he is working on other new items as well.
Davinder says maintaining a restaurant with gluten-free options is
not as difficult as one may think, although it can be challenging at
times. The biggest issue is the cost of purchasing gluten-free
products. Lilit Café has mostly avoided these issues by using only one
type of products. In other words, the sauce on the glutinous pizza or
the mayonnaise used on the sandwiches made on wheat bread is the same
as that on the gluten-free options: completely gluten-free. In the
restaurant kitchen, they have a second set of everything to prepare
gluten-free food and have even purchased a second oven.
As time went on, Davinder has noticed several positive changes in
his business. People with celiac heard how great and safe Lilit Café
was and spread the word! Soon Davinder noticed that there was a great
deal of repeat business, and not just from Bethesda. People in the DC
Metro area sometimes travel over an hour to eat at Lilit. Visitors and
tourists with celiac stop in all the time after hearing how great it is
on the internet. The decision to offer gluten-free has been a very good
one for Lilit Cafe!
Lilit Café is a fantastic example of how a small restaurant can
provide gluten-free food effectively and how great it can be for
business. Please pass this article on to other restaurants in your area
that may be interested in offering gluten-free options. Maybe a café
like Lilit will follow their example and o