NOTE FROM ALICE
NFCA Executive Director

It's better to be safe than sorry!

How many times have we all heard that admonition? In the case of celiac disease, this age-old adage is so, so true. The big question is how should we celiacs insure that we are "safe"? We all know about living a gluten-free lifestyle and the benefits that sticking with the program can bring. But, there is an extra step in being vigilant that everyone with celiac disease needs to take.

In a word, it is testing.

Those of us who have been diagnosed with celiac disease and who are maintaining a gluten-free diet owe ourselves the assurance of an annual test to confirm that our antibodies are in line.

Because celiac disease has a genetic component, it is important that family members get tested. Many family members postpone having this important and simple blood test because they are apprehensive about the road ahead. Those who attended one of the NFCA Gluten-Free Cooking Sprees know that a gluten-free diet can be delicious and, if you wish, exotic. We celiacs are so fortunate that our "treatment" can provide us with an excellent quality of life.

So, get that check-up blood test and encourage family members to find out where they stand by being tested, as well. They will thank you in the long run.

If you are curious about the tests involved in diagnosing celiac disease, please go to the NFCA website and click on the link for the symptoms checklist. There you will find a section concerning diagnosis. The recommended tests as approved by the NFCA Scientific/Medical Advisory Board are listed there.

All of us at NFCA wish you a healthy and happy summer. Take care!

Back to Top

BEYOND RICE CAKES
Special Investigation: Celiac Disease and Reproductive Health

By Vanessa Maltin
NFCA Director of Outreach & Programming

Beyond Rice Cakes is generally an upbeat lifestyle column, dedicated to making you laugh at the hilarious things that often happen to people with celiac disease. I strive every month to make you feel good about being on a gluten-free diet and find new and creative ways to impress your non-celiac friends with delicious recipes. However, this month, I'm going to be a little more serious and examine how celiac disease can drastically impact the reproductive health of both men and women. I hope that you'll read this article carefully and then talk to your family and friends about it, so that together, we can help all people in the United States with celiac disease who also suffer from reproductive health issues.

I am only 24 years old, but I am blessed to have already found three exceptional role models who I admire and respect more than I ever could have imagined. All three of them are women who experienced devastating pregnancy complications because they spent so many years with undiagnosed celiac disease.

  

Alice Bast
I met NFCA Executive Director Alice Bast in July 2004 during the National Institutes of Health Celiac Disease Consensus Conference. I was working as a news reporter for the Palm Beach Post newspaper and writing an article on celiac. In my editor's mind, this was a very slow news day. Little did I know, that it would turn out to be one of the most important news days of my entire life.

As Alice was explaining the basics of the disease to me, she mentioned that migraine headaches are a symptom of celiac. When she said this, I think I dropped my notebook and pen on the floor. I was in shock. I had suffered debilitating migraines my entire life and had tried every headache medication available, all to no avail. I immediately got tested and sure enough, I had celiac.

The week after I received my positive blood test, I called Alice to thank her and learn more about the disease. Alice told me her personal story of being diagnosed with celiac, a story that to this day still brings tears to my eyes to think about.

Alice first experienced symptoms of celiac disease after returning from a trip to Mexico and deciding with her husband to have a second child. The first six months of the pregnancy were uneventful. She felt healthy and her unborn baby was quite a little kicker! But suddenly, at the end of the second trimester, Alice was struck with severely debilitating diarrhea. Several times she visited her obstetrician, complaining that she had not had a formed stool in over a month. He told her not to worry.

Two weeks before her due date, the diarrhea had gotten out of control and Alice continued to say that the baby was not moving correctly. Again, the doctor said that the baby was in a small space without much room to maneuver and that Alice shouldn't worry so much.

Two days later, Alice told her husband that the baby was dead, that all movement had ceased. He put his head on her tummy and as Alice says, "the panic in his eyes confirmed my fears." They drove to the hospital where Alice delivered a full-term stillbirth child. Alice and Will named the baby Emily.

It took Alice several more years and a near second stillbirth baby before she was diagnosed with celiac disease.

CNN Newsroom Anchor Heidi Collins
Heidi Collins and I first met in person in November 2006 at the International Celiac Disease Symposium in New York City. We immediately bonded over gluten-free food and the desire to help all Americans with celiac disease get accurately diagnosed. And…of course, the need to improve gluten-free food options!

Heidi's passion for helping people with celiac disease comes from more than a decade of suffering debilitating symptoms and, like Alice, losing a child.

Heidi's constant health issues grew nearly intolerable when 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.

Connie Maltin, my mom
My mom and dad are the two most amazing people in the world. They are the most supportive, kind and generous people I know, making them the perfect candidates for parenthood. My parents were married in February of 1973 after my mom convinced my dad that she made the best cookies in America….little did my mom know that those delicious cookies would cause her and my dad some of the greatest devastation imaginable….miscarriage.

Because of my mom's celiac, it took nine years to successfully have a child, ME, and it was still a close call. I was born two months early and weighed only about three pounds.

To help other families prevent the devastation that Alice, Heidi and my mom experienced, here is some basic information on infertility and reproductive health that explains the link to celiac disease.

Celiac Disease and Infertility Link:
Over the last 10 years, several studies have examined the link between celiac disease and infertility and found that women suffering from unexplained infertility may have clinically silent celiac disease.

• One study conducted by physicians at Thomas Jefferson University Hospital in Philadelphia found that the rate of recurrent spontaneous abortion (RSAB) and infertility in celiac disease patients is at least four times higher than the general population. They suggested that patients who experience unexplained infertility or RSAB should be screened for celiac.
• Another study from the Department of Medicine at Tampere University Hospital and Medical School at the University of Tampere Finland found that the rate of celiac disease among women reporting infertility was 4.1%. Although the exact reason for the increased risk remains unknown, the researchers suggested that female celiac patients who are not adhering to a gluten-free diet have a shortened reproductive period and early menopause. Males with celiac disease have shown gonadal dysfunction, which could also contribute to fertility complications.
• The link between celiac disease and infertility is currently being evaluated by researchers at Molinette Hospital in Turin Italy. Early reports from their research suggest that the prevalence of celiac disease among women with unexplained infertility is 2.5% to 3.5% higher than the control population. They suggest that celiac disease represents a risk for abortion, low birth weight babies and short-breast feeding periods, all of which can be corrected with a gluten-free diet.

What is infertility?
Infertility is defined as the biological inability of a woman or man to contribute to conception. Many experts define infertility as not being able to get pregnant after at least one year of trying. Women who are able to get pregnant but then have repeat miscarriages are also said to be infertile. According to the National Center for Health Statistics, roughly 12% of women in the United States—up to 7.3 million—had difficulty getting pregnant or carrying a baby to term in 2002.

Although it is commonly believed that infertility is heavily related to female factors, only about one-third of cases of infertility actually stem from the woman. About one-third of cases originate with the male partner and the remaining cases are a combination of unknown factors or a mix of male and female complications.

Infertility in Women:
Most women who suffer from infertility have a problem with ovulation, meaning there is a complication with the eggs being released to be fertilized. Other causes of infertility include:

• Ovulation issues
• Problems with the uterus lining
• Uterine fibroids
• Blocked fallopian tubes because of endometriosis, ectopic pregnancy, or pelvic inflammatory disease.

Factors that increase a woman's risk of infertility:

• Age
• Diet
• Athletic activity
• Stress
• Overweight or underweight
• Smoking
• Alcohol consumption
• Sexually transmitted diseases (STDs)
• Health problems that cause hormonal changes
• Celiac disease

Infertility in Men:
Infertility in men is generally caused by producing too few or no sperm. The problem may also be the sperm's ability to travel to the female's egg and fertilize it. This is typically caused by abnormal sperm shape that prevents it from traveling in the correct form.

Factors that increase a man's risk of infertility:

• Alcohol consumption
• Drugs
• Toxins in the environment such as lead and pesticides
• Smoking
• Chemotherapy and radiation treatment for cancer
• Celiac disease

Tests for Infertility:

• Hysterosalpingography: Physicians use x-rays to check for physical problems of the uterus and fallopian tubes. They inject a special dye through the vagina into the uterus, which shows up on the x-ray. This will allow the physician to determine if the dye moves normally through the uterus into the fallopian tubes. With these x-rays, doctors can find blockages that may be causing infertility.
• Laparoscopy: During this surgery doctors use a tool called a laparoscope to see inside the abdomen. The doctor makes a small cut in the lower abdomen and inserts the laparoscope. Using the laparoscope, doctors check the ovaries, fallopian tubes, and uterus for disease and physical problems. Doctors can usually find scarring and endometriosis by laparoscopy.

Treating Infertility:
There are several ways to treat infertility including:

• Medicine (clomiphene, Human menopausal gonadotropic, follicle-stimulating hormones, gonadotropic releasing hormones, metformin, and bromocriptine).
• Surgery
• Artificial insemination or assisted reproductive technology.
• Often times treatments are combined.

References:

• National Women's Health Information Center (NWHIC)
• American College of Obstetricians and Gynecologists (ACOG) Resource Center
• American Society for Reproductive Medicine
• Resolve: The National Infertility Association

Back to Top

ASK-THE-CHEF
Be My Grill

By Edgar Steele
NFCA Chef Spokesman

On a late Monday night, after carefully positioning pounds of steaks and chicken over the hot flaming grill fires for nearly six hours, I have a thought or two to share with you about this blazing smoky apparatus. Prior to working in the restaurant business, I thought of grilling as a burger and a hot dog. The occasional steak would sneak its way onto the adjustable grate, and when it did, a bottle of Lea and Perrin's steak sauce would always be involved. My father would show me how to meticulously arrange the coals in a pyramid-like stack in the center of the metal hemisphere and douse them with the appropriate amount of "grill fire fluid." When he turned his back, I used that brief moment to add seven times as much fluid as he initially used to ensure that my family, friends and I would not only enjoy a great meal, but an exhilarating show of flames in the process. As the burning match was tossed at the coals, a glorious ignition exploded. All of our close neighbors knew when "grill night" sparked in the rear section of my driveway.

Grilling on the Erie lakefront of Lorain, Ohio is a variation of a direct or indirect cooking technique that is practiced throughout the world. Grilling in the U.K. along with other commonwealth countries is performed under a heat source, a method which American cooks refer to as broiling. In South Africa the equipment we know as a grill is called a braai, on which you may find lamb chops, steaks, sausages or spareribs heating over wood or charcoal. The Chinese equivalent of the American grill is the hibachi, very similar to the brazier grill we backyard grillers are accustomed to. The hibachi has two internal cooking grids and the optional venting system for increased heat control.

"Cooks are made, but grill masters are born." is a quote from Brillat-Savarin. These inspiring words from Jean Anthelme characterize the oversetting brilliance grillers unearth when pondering the art of open fire cookery. Gallops beyond a simple cooking technique, tradition and culture are apprised with memories and ideas of the grill. Barbeque, rubs, marinades and kabobs of bamboo and the average forest tree stick alike are stems of what has become instilled American tradition. Slap some barbeque sauce on spiked pulled pork and mayonnaise coleslaw on a Brazilian Cheesebread "bun" and put it in your mouth. Chew it around, and it's delish beyond your wildest dreams.

Our smoky creations emerge here fellow dreamers. Lets explore the slowly turning world of BBQ, where vinegar, the occasional tomato, spices and most importantly the smoke rule the universe. Many people automatically think of a tomato-based sauce upon mention of the word BBQ, but this is not the case! BBQ, while sometimes implies a sauce of some type, is both a slow cooking method and an instrument for cooking food with the heat emitted from wood or charcoal. The term as a noun refers to the food items that are cooked using this method, while the verb is the act of cooking in this minimalist fashion.

Depending on where you find yourself in the world, and more importantly what items are available in that area, you may find yourself barbequing beef, pork, chicken, goat and sometimes vegetables. In Australia and New Zealand you will use a Barbie, and in South Africa a braii. Both of these terms are the equivalents of the BBQ known in America. In the Caribbean, an astonishing technique named barbicao is practiced, where instead of using a metal, ceramic or brick barrel to cook, a hole is dug into the ground in which a wooden platform resting on sticks is constructed. A whole animal, traditionally a goat is then lowered into the hole with a pot under it to capture any and all of the delicious juices that escape during the cooking process.

I want to make the discernment between grilling and barbeque clear right here right now.

Grilling is a fast searing process, while barbequing is a slowww cooking process with the mission of using the created smoke to its fullest flavoring potential. With a wide variety of options for the creating this smoke that is so important to the happiness of our mouths, one need only choose the source. Chips from different woods including apple, ash, cherry, walnut, hickory and birch are only a few of the many you may use to create a meal of biblical proportions. Each of these woods will impart a very unique flavor to the item that lies above. Lump briquettes are different woods that have been transformed into a pure form of charcoal. Processed charcoal briquettes is charcoal that has been ground and shaped often using artificial binders which unfortunately can add an undesirable flavor to a well paletted BBQ aficionado. A marriage of these smoke sources is pronounced by sprinkling some water-soaked wood chips atop ashed coals. This technique will bring yet another level of smokiness to the final product and act to control the heat source at the same time.

These fundamentals are the first leap down the path to understanding the hot and smoky language of grilling and barbequing. The following recipes are good starting points for anyone who would like to become acquainted with the technique. " If something tastes good baked, fried or sauteed, it probably tastes better grilled…. Steven Raichlan.

Grilled Cheesebread

• 4 Balls Brazilian Cheesebread Dough Balls, Thawed
• 3 Tablespoons Spanish Extra Virgin Olive Oil
• 4 Tablespoons Chopped Red Onion
• 1/2 Cup Diced Tomatoes
• 1 Garlic Clove, Minced
• 4 Tablespoons Piquillo Peppers, Diced
• 1 Tablespoon Chopped Parsley
• 1 Talbespoon Sherry Vinegar
• 4 Tablespoons Crumbled Feta Cheese
• Salt and Fresh Ground Black Pepper

1. Preheat and oven to 400 degrees. Combine the 4 cheesebread balls into one, and roll them out to a 12" by 10" square. Place the rolled bread onto an oiled baking sheet, and place in the oven for 10 minutes. Remove the bread from the oven and allow to cool.
2. In a non-gas grill, add applewood grilling chips. Light them, and wait until they have turned to embers. Spread the embers out evenly across the surface of the grill base.
3. Gently mix the red onion, tomatoes, garlic, piquillos, parsley, Feta, vinegar, oil, salt and pepper (to taste) together in a mixing bowl.
4. Lightly brush the bread with the oil on both sides, and place the par-baked bread on the grill. Allow the bread to cook on the first side until slightly browned, about 6 minutes. Repeat this on the other side of the bread. Remove the bread from the grill, and top with the tomato mixture. Cut the topped bread into desired sized squares and serve immediately.

Chefs Note: The piquillo is a sweet and slightly spicy red pepper from the Ebro River Valley in northern Spain. The peppers are picked at the perfect ripeness, roasted over an open fire and skinned. They are then packed in Extra Virgin Olive Oil and Sealed in a can or jar. They can be found in specialty or Latin supermarkets.

Grilled Oyster Chimichurri

• 10 Malpeque Oysters, Or Your Preference
• 2 Tablespoons Diced Shallots
• 1 Garlic Clove, Minced
• 1 teaspoon Serrano Peppers, Minced
• 1 Teaspoon Chopped Chives
• 1 Teaspoon Chopped Cilantro
• 1 Teaspoon Chopped Basil
• 1/4 Teaspoon Chopped Rosemary
• 3 Tablespoons Spanish Extra Virgin Olive Oil
• 1 Tablespoon Sherry Vinegar
• Salt and Fresh Grond Black Pepper To Taste

1. Mix the shallots, garlic, serrano peppers, herbs, oil, vinegar, salt and pepper to taste in a mixing bowl. Allow this mixture to sit at room temperature for 12 hours before use, then refrigerate.
2. In a non-gas grill, add pecan wood grilling chips. Light them, and wait until they have turned to embers. Spread the embers out evenly across the surface of the grill base.
3. Place the Oysters on the grill grate, top side (this will be the flat side) down. Cover the grill, and let the oyster heat for 25 seconds. Flip the oyster onto its bottom side, replace the gril lid and cook for 25 more seconds. Remove the oysters from the grill.
4. Remove the "lid" of the oyter with an oyster opener. Remove any shell fragments from the inside of the oyster. Place desired amount of chimichurri on top of each oyster. Serve oysters immediately resting on top of crushed ice.

Chefs Note: Chimichurri is an Argentinan sauce traditionally served with meats. The ingredients of this sauce can be substituted at will, in adaption to your preferred tastes.

Beer Barbecue Sauce

• 2 Tablespoons Vegetable Oil
• 1 Large Onion, Diced
• 2 Garlic Cloves, Sliced
• 1 Pound Tomatoes, Chopped
• 2 Tablespoons Worcestershire Sauce
• 1 Tablespoon Rice Wine Vinegar
• 2 Tablespoons Honey
• 2 Teaspoons Dijon Mustard
• 1 - 12 Ounce Bottle Redbridge Beer
• 1 Tablespoon Chopped Cilantro
• 1 Teaspoon Chopped Thyme
• Pinch Cayenne Pepper
• Salt and Fresh Ground Black Pepper

• Heat a saucepan over a medium flame. Add the oil and wait until it is hot. Add the onions and garlic to the pot, and reduce the flame to low. Allow the vegetables to cook, stirring occasionally until the onions are transliscent and a slight browning begins.
• Add the beer to the pot and stir well to remove any food particles from the bottom of the pot. Adjust the flame to medium heat and allow the beer to reduce by half. Add the tomatoes, piquillos, worcestershire, vinegar, honey, mustard and cayenne peppper to the pot. Allow this mixture to simmer, stirring occasionally, for about 20 minutes.
• Add the mixture along with the herbs to a blender or food processor and puree on high spee, until a smooth mixture is achieved. Add salt and pepper to taste.

Chefs Note: Barbecue sauce, although commonly considered to be tomato based, can vary depending on where you are. The Carolinas prepare a tangier vinegar based sauce. In Kentucky the meat is grilled dry and served with sacuce on the side.

Back to Top

RESTAURANT RANTS & RAVES
Carrabba's Italian Grill – Now that's Italian!

By Suzy Schurr
NFCA Volunteer

Late July, early August has never been my favorite time of year to cook dinner. I know, it's easy to slice some Jersey tomatoes and throw a couple of burgers on the grill, but sometimes, as many celiac's or those cooking for celiac's know, you just want someone to take over the cooking duties and dig into some hearty Italian food. It was one of those afternoons when I called my husband at work and suggested we go to Carrabba's for a mid-week pig out, gluten-free of course.

We arrived at the restaurant around 5:30pm and hardly a sole was there, but by 6:00 the restaurant was filling up with the "after work" crowd, senior citizens and many tired looking moms and dads with kids in toe. After our friendly waitress handed me my gluten-free menu, confidently indicating that I was about to eat fearlessly, a sense of euphoria came over me – a feeling that is reserved only for those on restricted diets with a special menu in hand.

I began my meal with the Cozze in Bianco, which quite simply is a bowl of steamed mussels in a white wine, lemon butter sauce. It was great! Probably meant for sharing since there were about 20 tender sweet mussels piled high in a shallow porcelain bowl, but because my husband does not ingest any type of mollusks, I was able to enjoy the entire bowl by myself. Each mussel was bathed in a fragrant butter sauce with ribbons of fresh basil draped effortlessly on the shells like a beach towel lying on the sand.

The entree that I ordered came with an ice-cold house salad. It was pretty much the expected romaine lettuce, sliced celery, carrot coins, chopped tomatoes and two Kalamata olives. I had them hold the onions. I decided to only take a few bites of this to save room for my next course; the Pollo Rosa Maria. Yum!! Two half grilled chicken breasts stuffed with mild Fontina cheese and thinly sliced prosciutto all smothered in a layer of sliced mushrooms and a basil lemon butter sauce. The moist and juicy chicken surrounded the melted cheese, which when cut, gave this "pizza starved celiac" a sense of biting into an extra cheese pizza minus the bread and sauce of course. This was just what I was craving – hearty, rich, full of flavor and yes, gluten-free. I ate every last morsel of the chicken and even managed to finish half of the steamed broccoli that I ordered on the side.

My husband also ordered off the gluten-free menu and chose the incredible Chicken Marsala. Like mine, his chicken was moist and tender, but his dish was topped with a mound of sliced mushrooms in a brown Marsala wine sauce. This chicken Marsala absolutely could have passed as an original, but without the flour base for the sauce. It was not missed in the least.

As usual, I saved room for dessert, and I was so glad I did. When you go to Carrabba's, you must order the John Cole, actually if you don't eat gluten, that's all you can order, but it was fabulous. Who would have thought a dish of vanilla ice cream and caramel sauce could be so decadent, but if the caramel is slightly warmed, just enough to melt the ice cream a bit and then sprinkle it with roasted cinnamon rum pecans. Ahh, now that's dessert!!!

A Carrabba's restaurant in your area can be found by logging onto, www.carrabbas.com.

Back to Top

LIFESTYLE
To Paris & Back: Learn to Make Gluten-Free Croissants

By Rachel Kay
NFCA Intern

Croissant. The word conjures up images of La Belle France and lazy Parisian mornings, people-watching on the Champs Elysees. These sweet, flaky, buttery delicacies have no enemies, except for perhaps your waistline. A friend of mine has said that croissants "are the best crescent-shaped things that can be digested," and I couldn't agree with her more.

Croissants have a notorious history, although most of it turns out to be more fiction than fact. Legend has it that croissants were invented in Poland to celebrate the defeat of a Muslim invasion at the Battle of Tours by the Franks in 732; the crescent shape representing the Islamic crescent. Another tale is that croissants were created by a noble baker in Budapest, Hungary in 1686 after he alerted the city's military leaders of a Turkish attack. The only reward this baker asked for in return for his heroism was to create a pastry commemorating the fight. Some versions of this heroic baker take place in Vienna during the Turkish siege in 1863, or during the siege of Buda in 1686.

There is little likelihood that any of these stories are true, however. Croissants were almost definitely invented in France, no earlier than 1850. The first recipe for croissants was published in 1891, but these were nothing close to the flaky pastry that we are all familiar with today. The first recipe that we would all consider to be a croissant was published in 1905 in France, not Hungary or Austria.

Sadly, celiacs too often resign themselves to a croissant free lifestyle. They see freshly baked pastries neatly line up, waiting to be slathered with Nutella or dipped into coffee and think if only… Well, I am here to tell you that we can have our croissants and eat them too! Several weeks ago I swore to myself that I would make gluten free croissants, even if I had to deplete the city's butter supply in the process.

Armed with $15 of butter, eggs, and 3 different methods of attack I went into battle. Although croissants might not have been invented after the Battle of Tours in 732, gluten-free croissants would surely be created after battle in 2007.

While leaving the butter out on the porch to soften, I set to work mixing the dough. The yeast foamed magnificently and the dough even passed an early taste test by me and my sister. Very promising, considering that some gluten-free doughs are hardly edible before baking. I won't bore you with details about the process of rolling the dough, a majority of croissant making time is spent waiting for the dough to chill in between periods of folding and rolling. The only difficultly that I had was that my dough tended to crack instead of fold, so I took it out of the refrigerator about 5-10 minutes before I wanted to fold it so that the butter could soften and the dough would warm up. (A croissant-making travesty, but a gluten-free baker has to do what a gluten-free baker has to do).

The most exciting part of the whole process was waking up at 4am to roll the dough one last time and then cut it into triangles to form the final product. This is when the croissants started taking shape and I felt like I had actually accomplished the task I set out. And when I took my first bite of croissant it was buttery, flaky and crispy in all of the right ways. I forgot about the flour that had exploded all over the kitchen and the dining room, the bowls and spoons that were stuffed into the overflowing sink, the slightly burned croissants. I was in Paris, and it was certainly going Bon Jour.

 

I have no future as a pastry chef, or a baker. Waking up at 4am every day is not on my list of things to do in this life. But my success at creating gluten-free croissants has opened up a whole new world of cooking gluten-free, one without limits. Even though cooking with gluten-free flours is very different than using wheat flour, and many experiments end up more fit for the trash than human consumption, it should not stop you from trying. Any recipe can be made gluten-free, be it a casserole or a French pastry, so don't be afraid to try!

Gluten-Free Croissants
It is important not to try and halve this recipe. If you really only want to eat half of what you can bake, bring some to share with your friends of family, they will love having freshly baked croissants and they won't even notice that they are gluten free! Also, don't be scared away by all of the directions for this recipe, most of it is just folding and rolling the dough, and waiting.

Ingredients:

• 1 1/2 cups whole milk, heated until warm (105°F-110°F)
• 1/4 cup packed light brown sugar
• 1 tablespoon plus 1/4 teaspoon active dry yeast (two 1/4 oz packages)
• 4 1/2 to 4 1/4 cups Pamela's Baking and Pancake mix (feel free to experiment with other baking mixes), plus more for dusting
• 1 tablespoon kosher salt
• 1 1/2 cups (3/4 pounds) UNSALTED butter

Make dough:
Stir together warm milk, brown sugar, and yeast in a bowl and let stand for 5 minutes until foamy. (If the mixture doesn't' foam then you must start again, try buying new yeast). Add flour and salt to yeast mixture and mix with a hand mixer or with a dough hook in a stand mixer on low speed for about 7 minutes.

Transfer dough to a work surface and knead by hand for 2 minutes, adding more flour as necessary to help the dough not stick. Form dough into a 1 1/2 inch thick rectangle and chill, wrapped in plastic, for 1 hour.

Prepare and shape butter:
Arrange sticks of butter horizontally, their sides touching, on a piece of plastic wrap. Cover with another piece of plastic wrap and pound the butter with a rolling pin to soften slightly (butter should be malleable but still cold). Roll out butter until it forms an 8- by 5- inch rectangle. Chill, wrapped in plastic wrap and a kitchen towel wile rolling out dough.

Roll out dough:
Unwrap dough and roll out onto a lightly floured surface, dusting with flour as necessary, into a 16- by 10-inch rectangle (the dimensions do not have to be perfect). Arrange the dough with a short side nearest you. Place the butter in the center of the dough so that the long sides of the butter are parallel to the short sides of the dough. Fold the dough as like a letter: bottom third up over the butter, then the top third down over the dough.

Turn dough so a short side is facing you, then flatten dough slightly by pressing down horizontally with rolling pin across dough at regular intervals. Roll out the dough into a 15- by 10-inch rectangle. Be careful not to let any butter poke through the dough. Try to patch any holes with excess pieces of dough or pat flour on top of butter to cover.

Note: It the butter seems to be breaking into pieces beneath the dough rather than remaining solid, allow the dough/butter to warm a few minutes. If the butter becomes too soft, oozes while making folds or rolling, put the dough back in the refrigerator for several minutes.

After rolling dough fold the two short ends into the center and then close, like closing a book. Wrap the dough in a kitchen towel (please don't use a terry cloth towel) or in plastic wrap. Place dough in the refrigerator to chill for 1 to 2 hours.

Remove dough from refrigerator and roll out into a 10- by 15-inch rectangle. Fold dough into thirds, as like a letter, dusting with flour as necessary. Roll dough out again and fold short ends of dough into the center and close. Wrap dough and replace in refrigerator to chill for 1 to 2 hours.

Repeat step 7 one more time and then leave wrapped dough for 6-18 hours, or overnight. (8 hours is the best amount of time).

Cut and shape dough:
Roll out dough one last time into a 10- by 38-inch rectangle, until 1/4 inch thick. Making the dough 1/4 inch thick is crucial as it will determine the texture of the croissants. Trim irregularities to make the strip uniform in width. Using a pizza cutter or a knife, cut the strip lengthwise to make two 5-inch pieces. Cut the each strip into individual triangles. Roll each triangle into the traditional croissant shape by rolling the triangle from the bottom to the point. Make the rolls slightly loose so that the dough has room to rise.

Place the croissants on a baking sheet and allow to rise for 1 to 2 hours.

Preheat the oven to 425°F. Bake the croissants for 20-23 minutes. Start watching croissant in oven after 15 minutes as the butter can cause them to burn quickly. Allow croissants to cool on a rack for several minutes before serving.

Enjoy!!

Back to Top

CLINICAL OUTLOOK
Gluten-Free on a College Budget

By Tiffany Shaw-Diaz
NFCA Volunteer

No matter how old you are, or how much money you allocate towards groceries each month, it is difficult to manage a gluten-free diet. But for those of us in college with celiac disease, such as myself, the change in diet and the increase in grocery bills can be especially frustrating.

The college diet typically consists of cheap and easy-to-prepare items such as Ramen Noodles and Kraft Easy Mac N' Cheese, none of which are naturally gluten-free. So, what does a college student with celiac eat that's equally cheap, fun, and most importantly, doesn't taste like cardboard?

There are more options than you'd think!

From all of my sleuthing in the local grocery (and health food) store, I've compiled a list of the best gluten-free foods for the college budget and schedule. Some of these foods are pre-made while others will require a moderate amount of preparation. Without further delay, here's a list of 10 gluten-free products and meal suggestions for the college student:

Annie's Gluten-Free Rice Pasta and Cheddar (www.annies.com). Okay, this pick is extremely obvious, but who doesn't like good 'ol box of mac? There's certainly a lot of GF mac n' cheeses to choose from such as the ones from companies like Glutino, DeBoles, and Amy's, but Annie's has the advantage of being widely distributed and looking and tasting like its Kraft counterpart. One box costs less than three dollars--that's a great price for quality, all-natural ingredients and a gigantic portion.

Chebe's Pizza Mix (www.chebe.com). This mix beats any delivery that I've ever had. There's some light preparation involved, such as mixing eggs, milk, oil, and parmesan cheese with the provided GF pizza flour, but it's really not that time-consuming. Since the crust is filling and dense, make sure to roll it out thin. Chebe's Pizza Mix is also versatile, so you can either stick to the basics such as pepperoni, mozzarella, and oregano or you can doll it up with "California–style" ingredients such as goat cheese, wild mushrooms, caramelized onions, and more. Depending upon your appetite, a full pizza can last for two or three meals, and the mix costs about three dollars. Now, that's a bargain!

Protein Salads. Not your average salad based upon lettuce—I'm talking about those hearty chicken and egg salads that mom used to make. Both of these only require a few staple ingredients and can be stored in the refrigerator for several days. Eat them with a slice of GF bread or snack on them with some GF crackers. For a good chicken salad, just add some diced chicken, mayo, mustard, raisins, sliced almonds, chopped celery, and curry power together in a bowl. For an easy egg salad, just add chopped-up hard-boiled eggs, mayo, diced celery, and dill together. But those are only suggestions! Both of these salads are open to experimentation to fit your wallet and what's in your fridge.

Nut-Thins or Rice Crackers. Costing less than three dollars, these are the cheapest GF crackers I've found. Made from nuts and rice flour, they come in a variety of flavors such as Smokehouse, Cheddar Cheese, Country Ranch, and Pecan, among others. The Smokehouse, cheddar, and ranch can easily over-power any cheese or dip, so I suggest that they are eaten alone. However, the pecan, hazelnut, and almond work great for soft and semi-soft cheeses and dips like hummus. My favorite snack happens to include Nut-thins. Just add a small slice of avocado and stilton (a common, English blue cheese) between two pieces of pecan Nut-thins, and you've got yourself a decadent mini-sandwich!

Jyoti Heat 'n Serve Entrees (www.jyotifoods.com). This is a more obscure item, but I have been able to locate it in my local health food store. Using all natural ingredients, these canned meals offer the best ready-made Indian food around. If served with two cups of basmati rice (cooked), one can will last for two meals and it only costs two to four bucks a pop. These canned meals are not specifically labeled as gluten-free but most of the ones that I have found have not contained gluten. The Jaipur Karhi (potato dumplings with a buttermilk sauce)—tangy, spicy, and creamy—is my hands-down favorite.

Polenta. What an under-appreciated food! This Italian cornmeal dish can be found in any grocery store and its uses are only limited by your imagination. In the organic section of my grocery store, I have been able to find the lose polenta as well as the hard, roll of polenta (perfect for slicing and pan-frying!). Use polenta with fish and seafood, or just simply add some Swiss and fontina, or even leave it unadulterated save for some salt and pepper. The polenta itself is rather cheap and you can choose the add-ins to accommodate to your budget. As an added bonus, you can thinly slice two polenta rolls to substitute the lasagna in "lasagna" to make a classic comfort food gluten-free.

Nutty Rice and Nutty Flax (www.perkysnaturalfoods.com). Now, I know what you're thinking: Those cereals sound so bland! True, they are. But bland foods are like a blank slate. Both the nutty rice and flax are some of the cheapest GF cereals I've found (three to four dollars each), and can be spruced up with the simplest of ingredients. Try using some vanilla soy milk with some bananas, berries, or dried fruit. With the addition of those ingredients, you've got yourself a breakfast jam-packed with fiber without coughing up the cash.

Homemade trail mix. Every college student has encountered this scenario: It's noon, you've got 15 min to get to the next class, and you haven't had a drop of food, so you decide peruse the vending machines for a quick lunch. If you have CD, don't do it. Instead, bring your own homemade trail mix. It's a great way to get sweet and savory flavors without all of the junk that's found in candy. I recommend throwing some exotic dried fruits in the mix such as sliced pitted dates with a sampling of nuts, sunflower seeds, and pieces of chocolate.

Bob's Red Mill Pancake Mix (www.bobsredmill.com). Within four days of my diagnoses, I had an insatiable craving for bacon pancakes. Since I was able to locate Bob's GF pancake mix, I decided to give it a whirl...and it worked! The mix itself isn't expensive (it costs about four dollars) and can produce multiple servings of pancakes. For those of us who grew-up on the buttery crust of the Cracker Barrel pancake, try this with Bob's: Before ladling out the mix into the pan, let a tablespoon of butter melt there first. No joke, it will make the surface of the pancake taste identical to that of Cracker Barrel's. Bob's pancakes can also tolerate sweet or savory add-ins (bacon, dried fruit, nuts, chocolate, etc.), so it's a mix that can wear a variety of hats.

"Pizza" Fries. This is a fantastically glutinous and quick method for making pizza without dough. Simply load a two or three hand-fulls of frozen French fries onto a baking pan and heat them in the oven for about 12min at 400 degrees (keep in mind that cooking times may vary). Remove the fries from the oven and then add your favorite shredded cheese with GF pepperoni and sprinkle with oregano. Next, bake the "pizza" until the cheese has melted (this should only take a few minutes). And what about the pizza sauce? Simply dunk your gooey, crispy fries into a mix of ketchup with a pinch of ground basil.

Even though it can be tough to eat gluten-free in college–in terms of cost and labor—there's ways to get around that. Hopefully with these tips, you'll be able to eat great GF food at a bargain and without spending hours in the kitchen!

For more information on living gluten-free in college, check out Beyond Rice Cakes: A Young Person's Guide to Cooking, Eating & Living Gluten-Free. Available at all major bookstores.

Back to Top

CLINICAL OUTLOOK:
Diagnosing Celiac Disease, How to Increase Positive Diagnosis'
A review of "Detection of Celiac Disease in Primary Care" and accompanying editorial

By Rachel Kay
NFCA Intern

Celiac disease is chronically under diagnosed and misdiagnosed. It has been estimated that about 1 in 133 people have celiac disease, but only 1 in 4,700 people know that they have it. A study recently published in the American Journal of Gastroenterology by Dr. Carlo Catassi et al. saught to determine how all of the missing celiacs can be found.

The study took place between 2002 and 2004 and included 976 individuals who presented with symptoms known to be associated with celiac disease. Participating practices were asked to screen all patients who came in with symptoms of bloating, fatigue, thyroid disease, rheumatoid arthritis, weight loss, type 1 diabetes, among various other conditions associated with celiac disease. Subjects were tested for IgA anti-tTG antibodies and those with high anti- tTG levels, were then tested for EMA. To confirm the diagnosis, patients with positive EMA were subjected to intestinal biopsies and HLA typing to detect their genetic predisposition. The goal of this was to increase the diagnosis of celiac disease in a general practice setting. Before the study, diagnosis in the participating practices was extremely low; only 15 patients out of 54,988 had been diagnosed with celiac disease—far below the expected 5,000 who would have had celiac disease. Furthermore, only 35% of the doctors surveyed to participate had ever diagnosed a patient with celiac disease, even though many had been in the medical practice for an average of 20 years. (Zipser RD, Farid M, Baisch D, et. al. Physician Awareness of Celiac Disease: A Need for Further Education. Journal of General Internal Medicine. 2005; 20:644-646.)

After tTG-IgA levels were taken from patients, 30 presented with elevated amounts of this antibody. Of the 30 patients who tested positive for IgA anti-tTG, 22 also tested positive for EMA, the diagnosis was then confirmed by biopsy in 15 cases (3 patients refused biopsy and data was unavailable for 2 patients).

These results show a 2.3% prevalence of celiac disease in this particular, at-risk group, reflecting the consensus of many previous studies on this issue. In a recent survey among adult celiacs in New York it was found that the average length of symptoms before diagnosis was 5.8 years, this keeps with the results of this study in which 11 of the 22 patients had been presenting symptoms for well over 3 years, some more than 10. The study concluded that active-case finding among primary care physicians results in a much higher number of celiacs being diagnosed. The authors strongly recommend that everyone presenting possible symptoms of celiac disease, rather gastrointestinal or otherwise, be screened for celiac disease.

Dr. Peter Green, in an editorial in response to the study by Catassi et al. notes the prevalence of celiac disease among the patients include in the study and their symptoms. About 3.5% of those with gastrointestinal symptoms tested positive for celiac, 9% of those with thyroid disorders, 3.5% with iron deficient anemia, and 2.5% of those with fatigue. Although Dr. Green seems to agree that a lack of knowledge among physicians is the leading reason why so few people are diagnosed with celiac disease he disagrees with their testing methods. In the Catassi et al. study only anti-tTG levels were measured in all patients, however in people with selective IgA deficiency this test could have been negative even in the presence of celiac disease. Dr. Green argues that anti-tTG and IgG, along with total IgA levels should be measured in patients with suspected celiac disease.

Catassi et al. concentrate mainly on increasing knowledge among primary care physicians. Dr. Green suggests that endoscopists, pathologists, and gastroenterologists also need to be well educated about the prevalence of celiac disease as well as the many clinical manifestations of celiac. In most medical textbooks, celiac disease is only listed in the "Malabsorption" chapter, even though it more commonly resembles a multisystem disorder. Dr. Green advocates educating physicians and medical specialists in medical schools, where awareness is currently lacking.

Increasing primary care physician's knowledge and encouraging them to actively test patients with diverse symptoms for celiac disease can greatly increase diagnosis, as the Catassi et al. study points out. During this study, by actively testing individuals in several primary care practices, participating physicians raised diagnosis from one in 3,666 patients to one in 117. Although primary care physicians are not going to be the only doctors seeing patients who may have celiac disease (gynecologists, dentists, and gastroenterologists among others are potential medical professionals who could be diagnosing celiac), increasing the number of celiacs who are being correctly diagnosed—by any physician—is vital. Further studies of interest could include examining how often other medical professionals (ie, gynecologists, etc) see patients who might have celiac disease, and how often screening or referrals are performed.

Back to Top

CLINICAL OUTLOOK
Research Center Updates

By Genevieve Hneich
NFCA Intern

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
The NIDDK is part of the National Institutes of Health (NIH) and the U.S. Department of Health and Human Services. NIDDK's reference collection provides titles, abstracts, and availability information for health information and health education resources. Check out their two newest additions: The Essential Gluten-Free Restaurant Guide and Guidelines and Goodies: Eating Gluten-Free and Enjoying It. Moreover, the NIDDK image library is a searchable database of original full-color and black-and-white images available in low, medium, and high resolutions. The interactive health education tools from the NIH is a collection of health quizzes, tutorials, podcasts, streaming audio files, and surgical videos that can be used to learn about diseases, conditions, diagnostic procedures, and treatments.

Also, NIDDK is planning periodic celiac disease emails through its e-newsletter Celiac Disease News, highlighting campaign components and initiatives. The email updates also include a brief feature story that organizations may use or adapt for their own publications. Over the past year, the campaign distributed 7,605 copies of the celiac disease fact sheet, 5,310 copies of What I need to know about Celiac Disease, and 1,756 copies of the NIH Consensus Statement on Celiac Disease.

The campaign will be exhibiting at the 2007 American Dietetic Association Food and Nutrition Conference and Expo from September 29 to October 2 in Philadelphia. For more information, visit Food & Nutrition Conference & Expo (FNCE). Also, visit their booth at the American College of Gastroenterology Annual Scientific Meeting from October 12 to 17, 2007 in Philadelphia. For more information, visit www.acg.gi.org/physicians/education.asp#Annual.

The University of Chicago Celiac Disease Center
The UCCDC is committed to offering accurate reliable information and education to help raise awareness and diagnosis rates of celiac disease. The Center has expanded its capacity and broadened its mission in the last few months. Aside from the name change from "Program" to "Center", UCCDC will be again offering their Preceptorship Program. This educational opportunity was established last year by Dr. Stefano Guandalini, the Center's Medical Director, for medical professionals to attend an on-site 2-day course focused on celiac disease. In October, UCCDC will host their 7th annual free blood screening for celiac disease. Furthermore, their care package program, a free service for newly diagnosed Celiacs, continues to grow! This basket of gluten free foods, information on the disease and the diet as well as other useful information has reached Celiacs in almost every state in the nation! Finally, UCCDC's research is continuing to flourish. Dr. Bana Jabri and her team are making great progressing in understanding what triggers celiac disease and ultimately how to reverse that trigger. For the free information and education hotline, call 773-702-7593 or visit their comprehensive website at www.celiacdisease.net.

Celiac Center at Beth Israel Deaconess Medical Center
The Celiac Center at Beth Israel Deaconess Medical Center, founded in November 2004, is the only center in New England specializing in celiac disease. There are many exciting activities going on! Dr. Kelly is currently involved in a first of its kind nationwide educational project to educate primary care physicians in celiac disease and Melinda Dennis, RD, is offering both in–house and local nutrition classes addressing the complexities of living gluten-free. The center is dedicated to expanding the awareness of celiac disease among the lay and medical communities through research, community outreach, education programs, and compassionate care.

Detlef Schuppan MD, PhD and Tobias Freitag MD are now studying the immune system's response to both gliadin and the tTG autoantigen in vivo using mice that bear the major genes predisposing to celiac disease in humans. A multi-disciplinary team of gastroenterology, psychology and nutrition are conducting research to understand the psychological factors that influence adherence to the gluten-free diet. Moreover, the first phase of the study entitled "Correlates of Gluten Free Diet Adherence in Adults with Celiac Disease" was completed with 157 subjects in the summer of 2006. Progress is now underway for Phase 2. The center is recruiting an additional 50 subjects to complete a similar questionnaire, participate in evaluation by a trained clinician and have blood testing. There are also preparations for the second phase of a clinical trial on "Zonulin Receptor Antagonist in celiac disease". This multi-center study looks at the efficacy, safety and tolerability of an investigational drug that might be used to treat celiac disease. This drug study marks the first attempt to uncover a non-dietary treatment for celiac disease. The clinical research group has also completed and published a study on the reasons why a minority of individuals with celiac disease does not respond fully to treatment with a gluten-free diet. In the study, 90% of celiac patients had an excellent response to the diet. However, 10% did not. Common reasons for an incomplete response were: errors in the diet(35%), irritable bowel syndrome (22%), refractory sprue (10%), and lactose intolerance (8%). Over the last year, their research team has published numerous articles on celiac disease, both in basic and clinical research.

To submit research center updates, please email editor@celiaccentral.org.

Back to Top

HOT PRODUCTS

Nutritious Creations
Nutritious Creations began in founder Robin Patrusky's mother's kitchen in Bethpage, NY. The fledgling company believed in creating all-natural vegetarian health food—like veggie burgers, soups and snacks—that actually tasted good! Although the goodies are no longer delivered on Robin's brother's bike the goal of the company has stayed the same, producing good-tasting, all-natural food.

Nutritious Creations has since expanded to produce over 30 varieties of baked goods, such as complete lines of healthy cookies, bars and brownies. Most recently they have created a line of gluten-free cookies that are also dairy-free and egg-free (for those of you with other allergies). These cookies were inspired by two of Robin's daughter's roommates who have celiac disease. Robin began to discover how common celiac disease was, and how uncommon good gluten-free goodies are.

The new gluten-free cookie lines includes cookies like banana walnut, carrot cake, chewy chocolate chip, and coconut chocolate chip.

To learn more about the cookies or to order visit: www.snacksforlife.com

Kari Out Company
If you are like many celiacs, restaurant dining often means BYOB—of soy sauce, that is. But there is no need to suffer through lugging around awkward bottles and salty spills. Kari Out Company has introduced the first low-sodium soy sauce in packets that are gluten-, sugar-, and wheat-free!

Paul Epstein, President of Kari Out Company, inspired the company to create gluten-free soy sauce because he and his daughter both have celiac disease. They loved to order Chinese-takeout but were unable to eat most soy sauces that were available in restaurants.

Although Kari Out only supplies products to distributors you can buy packets of the gluten-free soy sauce at many online retailers. You can purchase boxes of 500 packets of the original Kari Out soy sauce from ReStockIt or single packets of the low sodium soy sauce from AllergyGrocer.com.

Amy's Kitchen
Amy's Kitchen has been a reliable source of gluten-free mac 'n cheese for years, a kid favorite. Their chef's have not just been lying in wait, however. They have been creating a gluten-free (and dairy-free!) baked ziti kids meal. The serving of rice noodles and sauce also includes broccoli, a piece of rice-bread focaccia, and even a baked apple crisp! Amy's has also recently re-introduced some rice pasta bowls, including a Baked Ziti bowl and also Garden Vegetable Lasagna. Both make a fantastic meal if you are in a rush and don't have time to create a whole gluten-free meal from scratch.

Amy's Kitchen currently has over 60 products that are gluten-free, all of which are regularly tested to meet the current FDA standards for gluten-free food (under 20 ppm). Here is a list of the gluten-free products made by Amy's Kitchen. You can buy all of their products online at various online markets, or you can search for stores near you that carry products by Amy's Kitchen. Call your local supermarket and ask them if they have Amy's products.

Back to Top

Namaste Foods Spice Cake Mix

By Kathleen Klocko
NFCA Volunteer

When I was growing up, my birthday cake of choice was always a carrot cake. Therefore, I was thrilled when I saw Namaste Foods Spice Cake Mix (with Carrot Cake variation). It produces a lovely spice cake and carrot cake, fairly similar to what I remember my birthday cakes as being.

Using the mix was easy. It only requires three additional ingredients, eggs, oil and water. However, there are two important caveats. In the extensive testing process (because I kept eating the samples), we discovered two important things about the mix. It says to bake for 26-33 minutes. However, when we pulled them out after 26 minutes, the resulting spice cake fell in the center and was not really done. One can hide this under a ton of frosting, however, cooking for the full 33 minutes works much better. The other thing we discovered was that with the full amount of oil, the resulting cake was rather oily. Substituting plain applesauce in for half of the oil made for a more balanced (and more healthy) cake.

The mix produces at is accurate!

So, with some adjustments to the recipe and a full baking time, I heartily recommend this mix! Enjoy!

www.namastefoods.com

Back to Top

CELIAC DISEASE IN THE NEWS

Celiac Disease Conference Call
Brief: Some of the blogosphere's celiac bloggers had the opportunity to speak with Dr. Anthony DiMarino and the National Foundation for Celiac Awareness during a conference call hosted by Revolution Health.
Hear an audio stream of the call

Economic Burden of a Gluten-Free Diet
Brief: A study done by A.R. Lee et al. analyzes the cost of purchasing gluten-free products compared to their gluten-containing counterparts. The study analyzes the cost difference between different venues offering gluten-free food and the availability of essential gluten-free products. On average they found that gluten free products were 240% more costly.
Read this study

Detection of Celiac Disease in Primary Care
Brief: Dr. Carlo Catassi et al. in their recent study were able to increase diagnosis to 2.3% among patients presenting symptoms of celiac disease in a primary care setting by encouraging doctors to actively screen patients for celiac disease. This represents a 32- to 43-fold increase in diagnosis by the participating physicians.
Read this study
Also, read a response to this study by Dr. Peter Green

Back to Top

AWARENESS ADVOCATE OF THE MONTH
Ellen Wilcox. Director, ASHP Public Relations

By Genevieve Hneich
NFCA Intern

NFCA is delighted to honor Ellen Wilcox as the August Awareness Advocate of the Month for being an inspiring woman dedicated to her family, her job and raising celiac disease awareness. In the midst of her demanding job as the Director of Public Relations for the American Society of Health Systems Pharmacists, Ellen has managed to do wonderful things with NFCA! Ellen was first attracted to NFCA earlier this year when she saw an email from her local support group about the New York City Gluten-Free Cooking Spree. After reading that NFCA was looking for people to get involved in the event, Ellen immediately contacted Vanessa Maltin, director of outreach & programming, offering to help. "NFCA is such an impressive organization! As soon as I learned about all the incredible things NFCA was doing, I knew I had to be a part of it!"

The timing was perfect, she says. She had just completed her master's degree in management, in the public relations track, at the University of Maryland University College. "I had planned to start volunteering for celiac related activities as soon as I was done."

As the Director of Public Relations for the ASHP, Ellen hoped that her expertise might be of help. ASHP is the largest national professional organization of pharmacists, who practice in hospitals, ambulatory care clinics, long-term care facilities and home care operations. ASHP has a long history of medication-error prevention efforts and believes that the mission of pharmacists is to help people make the best use of medicines. Unfortunately, patients with celiac disease and the pharmacists who care for them face much difficulty today due to the lack of information available about the status of gluten in pharmaceutical products. Soon after speaking to Vanessa, Ellen approached her organization and explained the importance of what NFCA was doing in regards to ASHP's concerns about patient safety and health care quality.

Since then, Ellen has worked very diligently to involve ASHP members in NFCA activities and events. This includes having pharmacists participate in the Gluten-Free Cooking Sprees to become educated about celiac disease and encouraging them to become advocates within their pharmacies.

In NYC, Ellen recruited Dr. Robert Mangione, the dean of the pharmacy school at St. John's University and an ASHP member to join a cooking team for the NYC Cooking Spree. To her surprise, his team's Tortilla Crusted Free-Range Chicken was the winning dish of the night! For the Washington DC event, she contacted local media to cover the event and recruited healthcare professionals to be on the teams. "I was especially thrilled that the chef from my favorite local restaurant also participated."

Ellen's new lease of life came from being diagnosed with celiac disease at age 42. Amazingly, she was diagnosed by the same gastroenterologist she had seen for years, soon after the NIH Consensus Development Conference on Celiac Disease "The change in my life has been dramatic. My chronic gastritis disappeared overnight! It was incredible." Slowly her skin began to glow, her energy levels increased and the damage to her gallbladder improved. "Because my gallbladder wasn't working properly, I couldn't even eat one French fry without getting horribly ill. Now french fries are back in my life, although that's probably not a good thing!"

Ellen's day at the office is very hectic. "There are often sudden shifting priorities depending on what may be happening in the nation or the world."

In addition to working and volunteering, Ellen is raising two teenage daughters in Rockville, Maryland with her husband. "After work, I'm juggling just like any other working mom. But it certainly got a lot easier when my older daughter got her driver's license. Before that, it seemed I spent all my free time driving somebody somewhere!" Not surprisingly, Ellen enjoys many hobbies such as painting, gardening, and knitting. Volunteering is a unique and very rewarding part of her life after being diagnosed with celiac disease. "I still find it so stunning that all the seemingly unconnected health problems I had had my whole life were all caused by this disease and I never knew it!"

Ellen gratefully thanks the celiac community for being so friendly and supportive. "It makes it so much easier for people who are just learning about a gluten-free diet." In the end, Ellen Wilcox is a true role model for women who strive to have it all: career, family, philanthropy, and fun!

Back to Top