Beyond Rice Cakes

LPGA Tour Player Sarah-Jane Kenyon Joins NFCA as Athletes for Awareness Spokeswoman

When I think about playing a round of golf, I picture sunny skies, beautiful green grass, crystal clear lakes and the occasional sand trap. I think about breathing in the fresh air and hopefully finding the perfect club to hit a hole-in-one.  I think about good times on the course with family and friends and of course, the 19th hole (aka eating and drinking after the round). 

Although it would incredible to only have these warm and fuzzy thoughts about golf, people with celiac disease have to be a little bit more careful and plan ahead.  And that’s exactly what LPGA Tour Professional Sarah-Jane Kenyon does every day before heading to the golf course.
As the new Athletes for Awareness Spokeswoman for the National Foundation for Celiac Awareness, Sarah will be sharing her story and keeping us posted of her gluten-free dining experiences while on the professional golfers tour!

So, who is Sarah-Jane Kenyon???
Sarah is a native Australian and started playing golf at the young age of 12. She quickly showed promise and by age 13 she was competing in tournaments all across Australia. In 2002 she was the Australian Junior Champion and in 2003, winner of the Queensland 72-hold Championship. She finished 10th in the 2004 Australian Open and competed in the 2006 U.S. Women’s Open Championship.  Now, at 23, Sarah is competing as a member of the LPGA tour.

Pretty impressive isn’t it?! What’s even more impressive is that she manages to keep up with the rigors of the LPGA tour all while managing a gluten-free diet!

Sarah only recently began experiencing symptoms of celiac disease. Her symptoms included gastrointestinal discomfort, headaches and severe fatigue, none of which allowed her to perform at her best while on the professional golfers tour. Luckily, Sarah knew what might be happening — her mother, Sharon, has celiac disease, so when the symptoms appeared, it took no time at all to figure out the cause!

“I started feeling poorly whenever I ate ‘normal’ foods, like bread and pasta,” said Kenyon. “Since my mother has celiac, I knew right away that I might be susceptible because the disease is genetic. Since I started on a gluten-free diet, I’ve felt much better.”

With a cure to her problems in place, Sarah is speaking out to help other athletes in the United States get diagnosed and manage a successful gluten-free diet while on the go!

How does she do it?
Before Sarah knew what was causing her distress, she says she lived on Panera and Quiznos while traveling to tournaments. Now she says she has to plan ahead. She always keeps fresh fruit, vegetables and rice cakes with her on the golf course and says she is lucky that the LPGA tour organizers always keep healthy foods on hand for the players to eat.

However, Sarah was sure to say that the United States is nothing like her home country of Australia.

“In Australia, there are tons of gluten-free options! There are bakeries and restaurants and even Starbucks has gluten-free food!”

The bottom line she says, is that people in Australia truly understand the disease and in turn there are an abundance of delicious gluten-free food options.

As the Athletes for Awareness Spokeswoman, Sarah will wear the NFCA logo on her apparel and golf bag throughout the LPGA tour season and will work to promote awareness among fans and at events sponsored by the NFCA. 

Hopefully the gluten-free diet, coupled with support from the NFCA will help Sarah play even better golf!

Gluten-Free Meal Please: Triumph Dining Publishes Essential Gluten-Free Restaurant Guide

I’m finally turning 25…my car insurance is becoming $500 a year cheaper, I can rent a car without paying a hefty penalty and I think that I’m actually going to avoid a quarter-life crisis…now, all I have to do is find a restaurant to celebrate at that can make a gluten-free meal and satisfy the stomachs of my family and friends…oy vey!

As I began planning my birthday party, my immediate instinct was to go somewhere that I go all the time. Somewhere that I know is safe and can make me a gluten-free meal that will definitely not leave me with explosive diarrhea on my birthday. But then I thought about it for a few minutes and decided that this is the start of a new era of my life and with it should be new and exciting dining experiences!

My dad has a bad stomach and is on a high-fiber diet, my mom also has celiac and colitis, one of my best friends is kosher and another is allergic to citrus! AHH! What to do?

Thankfully, the latest edition (2008-2009) of the Triumph Dining Essential Gluten-Free Dining Guide arrived in my mailbox last week, as did my Gluten-Free Dining Cards. YIPPIE!

The guide provides instant access to celiac-friendly restaurants and gluten-free lists including:

• More than 1,600 individually-owned restaurants specifically recommended by other Celiacs for their ability to accommodate the gluten-free diet.
• More than 900 individually owned restaurants offering printed gluten-free menus, gluten-free pastas or gluten-free pizza.
• More than 2,600 chain restaurant locations that have extensive gluten-free options.
• 80 lists of gluten-free items provided by regional and national chain restaurants, from fast food joints to high-end steakhouses.
• Strategies for ensuring successful and safe gluten-free restaurant dining.

So, I took the book and a cup of coffee out onto my balcony and immediately flipped to the Washington, DC section. There were about 40 restaurants in this section. I also looked at the Maryland and Virginia sections, which upped my options to more than 200 restaurants in the DC-Metropolitan Area, all that are gluten-free friendly!

I read descriptions of so many restaurants and my mouth was watering! I came up with a list of three and sent copies the menus to my friends and family who would be attending dinner. After a very un-democratic vote that was whole-heartedly influenced by ME, we decided that my party would be at a Maggianos in Friendship Heights.

Now, you would think that since we picked a gluten-free friendly restaurant that the difficulty would be over…Not quite yet. Maggianos is a family-style Italian restaurant, so when you have more than 4 people, they ask that you order large portions to share…this is what is known as family-style dining.  How on earth would everyone be accommodated? Not to worry!  Triumph Dining gave me complete contact information for Maggianos, so I knew exactly whom I needed to speak with about my utterly difficult family.

Within one minute of dialing Maggianos, I was connected directly with the chef and we went over the family-style menu and he highlighted options that would work for a large party. The menu allows you to choose: 2 salads, 2 appetizers, 2 entrees, 2 pastas, 2 vegetables and dessert—all of which are bottomless, so you can refill as many times as you want!

Here’s the menu we came up with:

-Grilled Calamari with lemon butter dipping sauce
-Sliced beefsteak tomatoes, fresh mozzarella cheese; drizzled with our Italian Vinaigrette
- Chopped Salad with chopped iceberg lettuce, diced tomatoes, crumbled bleu cheese, green onion, avocado, crispy Prosciutto, tossed in our signature House Dressing.
-Maggiano's Salad with Iceberg and romaine lettuce, crumbled bleu cheese, crispy Prosciutto, red onions, tossed in our signature House Dressing.
-Rigatoni pasta, herb roasted boneless chicken, mushrooms and onions, tossed in a light Marsala cream sauce. (substitute gluten-free spiral pasta)
-Fettuccini noodles tossed with broccoli and garlic in a creamy alfredo sauce.(substitute gluten-free spiral pasta)
-A whole roast chicken marinated in fresh herbs, roasted and cut into pieces. Served in a light chicken sauce.
-Beef Medallions, Portabella Mushrooms, Garlic Mashed Potatoes.
- Broccoli sautéed with garlic and olive oil.
-Asparagus sautéed with garlic and olive oil.

Even though my menu is all set, I’m still going to take my Italian Triumph Gluten-Free Dining Card with   me to make sure that the staff working on my birthday know exactly how to prepare the food. Not only does the card say in English what I can and cannot eat and what to check on, but it also provides the information in Italian, just to be sure the chef understands!

The cards are also available for the following cuisines: Japanese, Chinese, Thai, Vietnamese, Indian, Greek, Mexican and French.

Thank you Triumph Dining for helping make my birthday a fabulous experience! I’ll let you know how the big night goes!

How to get your copy of the Triumph Dining Guide:
http://www.triumphdining.com

Gluten in Medications Education Seminar

Approximately 3 million Americans may have celiac disease, an autoimmune  disorder triggered by the consumption of gluten, a protein found in wheat, barley, and rye. The Food Allergen Labeling Consumer Protection Act of 2004, which requires packaged food labels to name all ingredients containing wheat and other common allergens, was a major landmark for patients with celiac disease and food allergens. Yet no similar requirement exists for medication labels. On Friday, April 11, the National Foundation for Celiac Awareness, the American Society of Health-System Pharmacists and Giant Pharmacy will host a Gluten in Medications event for pharmacists and pharmaceutical manufacturers.

The event will feature 1.5 hours continuing education, sponsored by ASHP, followed by a two-hour stakeholders meeting examining issues involved in labeling derivative sources of excipients in medications. The CE program will focus on educating pharmacists about celiac disease, the issues of gluten in medication, and how celiac disease may affect normal absorption of both prescription and non-prescription drugs.

Who should attend: Pharmacists who practice in hospitals and health systems, community pharmacies, chain and grocery stores pharmacies; as well as pharmaceutical company representatives and national pharmacy organizations; other medical professionals and dietitians.

Learning objectives: Upon completion of the CE program, attendees will be able to define celiac disease and its pathophysiology; articulate the suspected incidence of celiac disease; list signs and symptoms; describe potential sources of gluten in medication; identify reactions celiac patients may have from drugs; describe current United States and International guidelines for labeling; and discuss ways that pharmacists and pharmaceutical manufacturers can help patients with celiac disease use medicines safely.

Date: Friday April 11, 2008
2:00-3:30pm Continuing Education Session (ACPE Program #204-000-079-L04-P)
3:45:-5:45pm Stakeholders Discussion

Location:
Hyatt Regency Bethesda
7400 Wisconsin Ave
Bethesda, MD 20814
*Discounted hotel rates are available at the Hyatt Regency Bethesda. Please call the hotel directly and reference the NFCA Block to receive the discount.

PROGRAM:
2:00 p.m. Welcome

2:05 p.m. What is Celiac Disease?
Aline Charabaty, M.D., Gastroenterologist, Georgetown University Hospital 

2:20 p.m. Gluten in Medication & When is Gluten-Free Really Gluten-Free?
Robert Mangione, R.Ph., Ed.D., Dean of the St. Johns University College of Pharmacy

2:35 p.m. Parallels with the Food Allergen Labeling and Consumer Protection Act
Rhonda Kane, M.S., R.D., Consumer Safety Officer FDA Office of Nutrition, Labeling, and Dietary Supplements Center for Food Safety and Applied Nutrition

2:50 p.m. Excipients & Stakeholders
Gerry McEvoy, Pharm.D., ASHP Vice President, Drug Information

3:05 p.m. USP: Opportunities to Address Labeling Issues
Andrzej Wilk, Ph.D., Senior Scientist, United States Pharmacopeia

3:20 p.m. What You Can Do to Help Celiac Patients
Vanessa Maltin, Director of Programming & Communications, National Foundation for Celiac Awareness

To register for the Gluten in Medications Education Day, please visit:
http://www.celiaccentral.org/Other/Pharmacists_Education_Day/484/

Baby Bites: Registry Seeks to Link Celiac Disease to Birth Defects

Diarrhea, bloating and gas are the first things that come to mind when I hear the words celiac disease. Icky right?!?! But have you ever stopped to think about the non-gastrointestinal complications? I’m talking about things that you might not associate with celiac disease…complications that might not even be linked yet.

According to the University of Chicago Celiac Disease Center, there are more than 300 symptoms related to celiac disease. To better understand how celiac disease affects the body and how it may relate to birth defects, the National Foundation for Celiac Awareness and Birth Defect Research for Children are asking that parents who are diagnosed with celiac disease to register their children in the National Birth Defect Registry if their children have been diagnosed with a structural or functional defect. The registry will help determine if celiac disease plays a role in children developing birth defects.

What does this mean and how do you know if you should register your child?

First of all, you must understand what a birth defect is. According to the Centers for Disease Control and Prevention (CDC), a birth defect is an abnormality of structure, function, or metabolism (body chemistry) present at birth that results in physical or mental disability, or is fatal.  Most birth defects occur during the first three months of pregnancy, but brain development continues throughout pregnancy so there may be effects past the first trimester. There are thousands of different birth defects that range in severity from very mild to extremely severe and life threatening.  Approximately 250,000 babies are born each year with a major structural birth defect.

There are two categories of birth defects. Structural birth defects are related to body parts and generally result in physical disabilities. Common structural defects include cleft lip or cleft palate, heart defects, abnormal limbs, and neural tube defects that are related to development of the brain and spinal cord.

Functional birth defects relate to how the body works and may result in immune and nervous system disabilities. Examples of functional defects include problems such as attention disorders, autism, Asperger’s Syndrome, Pervasive Developmental Delay, learning disabilities and other intellectual disabilities.

Birth defects are recorded on the newborn hospital records of 3% or more of babies born in the United States. But, from one-third to one-half of all birth defects are not detected in the neonatal period. If babies are followed for 5-7 years after birth, up to 16% may have a minor or major birth defect. Approximately 20% of all birth defects are genetic (having one or more gene that does not work correctly; having an extra chromosome or missing part of one).  Other birth defects are caused by maternal illnesses like diabetes or exposure to certain viruses like rubella or CMV. In addition, an increased risk birth defects has also been linked to deficiencies in certain nutrients like folic acid. Other experts believe that 25% or more of birth defects of unknown causes will be linked to an adverse environmental exposure during pregnancy or in the prenatal period.

Can celiac disease cause birth defects? The answer is: we don’t know! That’s why we would like to join with Birth Defect Research for Children in collecting data through the National Birth Defect Registry. We want to collect information about current patients to determine if there is a there is a link that can be proved scientifically.

The National Birth Defect Registry is a research project designed through a collaboration of seven prominent scientists. The registry collects information on all categories of structural and functional birth defects as well as the health, genetic and environmental exposure histories of the mothers and fathers of these children. Registry data have identified patterns of birth defects in the children of Vietnam and Gulf War Veterans. The registry has also helped detect clusters of birth defects in communities with toxic environmental exposures and in the children of mothers exposed to similar medications during pregnancy. Registry data have been presented to numerous government agencies and in many national and international media forums.

How can you help?

If you have celiac disease and are the parent of a child who was born with a structural or functional defect, enter your case in the registry.

Step 1: Register your case at http://www.birthdefects.org/registry/main.asp. You will be asked to fill out basic demographic information about your family’s medical history. 

Step 2: Currently, there is no option within the registry to select celiac disease. But don’t worry! When you respond to the section about maternal and paternal illness, just fill in the blank that you are DIAGNOSED WITH CELIAC DISEASE or UNDIAGNOSED CELIAC DISEASE, depending on the time of the diagnosis in relation to childbirth. The evidence must be medically documented cases of both celiac disease and the structural or functional birth defect.

If you are a parent of a child with birth defects, please take a few minutes to contribute to the registry. Your participation will ensure that future research includes celiac disease and helps all of us with celiac better understand our disease and how it affects our future children.

Once data is collected, NFCA will publish the findings!

Resources:
https://www.birthdefects.org/
http://www.nichd.nih.gov/health/topics/birth_defects.cfm
http://www.cdc.gov/

NFCA: A Wealth of Resources

Are you a newly diagnosed celiac patient? Have you been diagnosed with celiac for what feels like a million years and are still looking for help? To help all patients with celiac disease and of course their family and friends, the National Foundation for Celiac Awareness has worked tirelessly to develop a repertoire of resources that can help everyone! So come one and come all to www.CeliacCentral.org. Whether you are a child going to school, a parent trying to plan a gluten-free birthday party, a young adult, college student, adult, seasoned chef, doctor or dietitian, there is information waiting for you!

Symptoms Checklist. Do you think you may have celiac disease? Are you trying to get a family member or friend tested? If so, the NFCA symptoms checklist is the perfect place to start. Simply click on the various symptoms and receive a printer-friendly form to take to a doctor. The form provides you with the latest information on celiac testing, including the blood test and small intestine biopsy. Give this form to your doctor to be sure he orders the correct tests! Not only is the symptoms checklist a tool for you or your loved ones to get diagnosed, but also the responses collected are helping the NFCA correlate symptoms to diagnosis. This data will help all of us better understand the disease and how it affects our bodies. www.DoIHaveCeliac.org

Celiac Survival Guide. Are you already diagnosed with celiac disease and look for help with managing your daily gluten-free diet? The NFCA Celiac Disease Survival Guide is a comprehensive guide for living a happy and healthy gluten-free lifestyle. The guide provides suggestions for food choices during the early healing process and also explores the fast-expanding marketplace. There is even information about pizza and beer, birthday party planning and the best tasting products on the market! Medical tips are also provided, as well as a step-by-step guide for ensuring ongoing health. www.celiaccentral.org/What_is_Celiac_/Celiac_Survival_Guide/416/

Gluten in Medications. Do you know all of the ingredients in all of the medicines that you take? Probably not! Current United States regulations do NOT require manufacturers to label the inactive ingredients in drugs. These inactive substances are called excipients and can be any one of a number of starches including wheat, corn, potato or tapioca. To learn all about the inactive ingredients in medications, download this short and simple flyer that the NFCA developed with the help of the American Society of Health-System Pharmacists. You can download an extra copy to give to your local pharmacist as well. www.celiaccentral.org/What_is_Celiac_/Gluten_in_Medication/434/

School Lunches. Are you the parent of a child with celiac? If so, this resource is for you! With the help of the United States Department of Agriculture, the NFCA developed guidelines to help children and parents navigate their school's meal program. The guidelines explain federal laws and provide step-by-step instructions for getting a child special gluten-free meals at school. www.celiaccentral.org/What_is_Celiac_/School_Lunches/464/

Related Diseases. Celiac disease is directly related to several other diseases and conditions. The NFCA has worked with leading researchers and organizations to provide the latest information on how celiac disease and the gluten-free diet is related to these conditions. Diseases include: Dermatitis Herpetiformis, Type 1 Diabetes, Thyroid Disease, Infertility, Osteoporosis, Depression, Sjogren's Disease, Juvenile Idiopathic Arthritis, Intestinal Cancer, Peripheral Neuropathy, Down Syndrome, Turner Syndrome, William Syndrome, Liver disease and migraine headaches. www.celiaccentral.org/What_is_Celiac_/Related_Diseases/98/

Gluten-Free Cooking Sprees. Mark your calendars and sharpen your knives! If you love food, be sure to check the NFCA website for a Gluten-Free Cooking Spree near you! Watch top doctors, chefs and dietitians compete to cook the best gluten-free food! And, the best part is that you get to eat it too! Cities for 2008 include San Francisco, St. Louis, Washington, DC, Buffalo, Boston and West Palm Beach. www.celiaccentral.org/Events/Gluten_Free_Cooking_Sprees/331/

Cooking Videos. Watch NFCA's Gluten-Free Cooking Show Alternative Appetites 24/7 on the website. I'll teach you to cook delicious food that no one will ever guess is gluten-free! All of the recipes are super easy and even a college boy could master these techniques! Current episodes feature pizza, risotto and of course the Brazilian Cheesebread Company. www.celiaccentral.org/Other/Alternative_Appetites_1/466/

These are just some of the amazing resources available at the National Foundation for Celiac Awareness. Be sure to visit www.CeliacCentral.org to see even more fabulous documents and articles that can help you live the fullest and most delicious gluten-free life!

San Francisco Cooking Spree a Scrumptious Success

On Saturday February 2, top San Francisco-area chefs, doctors and dietitians took over the West Bay Conference and cooked up some of the most delicious gluten-free meals of all time! Five teams raced against the clock to prepare decadent meals that highlighted the event's secret ingredient: gluten-free pasta.

Team 1 included Chef Clare O'Brien (Culinary Institute of America), Pauline Mysliwiec (Chief of Gastroenterology, Kaiser Permanente), Thelma Rodin (Santa Clara Medical Center), and Ashley Warner (San Francisco State University) Ashley Warner (San Francisco State University). This team presented UnGlu'd Mac'N'Cheese, which proved to be a favorite amongst kids in the room!

Team 2 was led by Pasta Pomodoro Chef Adriano Paganini and included Douglas Corley (Kaiser San Francisco), Rugmini Shah (California Department of Health), and Kaley Todd (UCSF). This team went against the norm by preparing a Risotto Salsicia. YUMMY!

Team 3's chef came to San Francisco all the way from Utah to participate in the event! Chef Paul Ruegner (Charlotte's Bakery), Mel Heyman (Chief of Pediatric Gastroenterology, UCSF), Morgan Camp (Integrative Medical Center), and Vikki Petersen (Health NOW Medical Center) joined together to cook Chicken Schnitzel Schloss Solitude, which was the tasty tongue twister of the night!

Team 4 rocked the salmon, cooking up a Poached Salmon with Pappardelle & Meyer Lemon Crème Fraiche. The dish had fried brussel sprout leaves, which were surprisingly delicious! Teammates included Alex March (Brick and Solstice), Antonio Qiros (Director of Pediatric Gastroenterology, Sutter Health), Anne Louise Santoro (Kaiser Permanente), and Yulia Rudman (San Francisco State University).

Team 5 prepared a delightful Prosciutto Wrapped Salmon with Herbed Polenta, Kasha, Dried Fig & Balsamic. This team included Glenn Hewitt (Compass Group, Microsoft), Jeffrey Aron (Dir. Inflammatory Bowel Diseases, CA Pacific Medical Center), Nancy Wei (Revolution Food Inc.), and Mickael Cardon (San Francisco State University).

CNN Newsroom Anchor and NFCA Spokeswoman Heidi Collins hosted the event with the National Foundation for Celiac Awareness. Heidi's personal struggle with managing celiac disease coupled with her love of delicious gluten-free food has helped move the Gluten-Free Cooking Spree forward nationwide!

The judges for the evening were Jacqueline Mallorca (Author, The Wheat-Free Cookbook), Elaine Taylor (Taylor Family Foundation), Gail Pyle (Stanford University Celiac Sprue Research Foundation) and two adorable kids with celiac, Riley Collins and Nathanial Corley.

Who were the big winners for the night?? For the first time in Cooking Spree history, there was a TIE! The judges couldn't decide between teams 4 and 5 (both made salmon), so the NFCA decided to let the teams share the honor of winning the San Francisco Gluten-Free Cooking Spree!

And, the tie actually worked out OK since Dr. Jeffrey Aron and Dr. Antonio Quiros are partners in gastroenterology at California Pacific Medical Center. The two will share the prize money from the cooking spree and will use it to partner with the NFCA to advance patient support programs at their new Center for Inflammatory Bowel Diseases.

About the Center for Inflammatory Bowel Diseases:
The Center for Inflammatory Bowel Diseases at California Pacific Medical Center is dedicated to focus on the fundamental interaction of the environment—as exemplified by the diverse microclimate and the ethnic composition of Northern California, and the innate and adaptive immune systems of the individual. This interaction occurs at the mucosal surface of the gastrointestinal tract and is at the heart of autoimmune diseases, of which celiac disease is the best-defined model. Investigating the interactions that also occur in Irritable Bowel Syndrome, Crohn's disease and ulcerative colitis will help us to develop novel and effective therapies for these diseases.

Dr. Aron says the Gluten-Free Cooking Spree was an "exciting and enjoyable evening, to continue to spread the awareness of celiac disease, and to help the work of the National Foundation for Celiac Awareness. We are anxious to continue our association as partners in these endeavors."

A huge thank you to all of the NFCA sponsors who make having these events possible and to all of the vendors who graciously donated food for the event! We couldn't have done it without you! An extra special thank you to Bob's Red Mill, Bio-Rad, Quest Diagnostics and Pamela's Products for going above and beyond to make the event a huge success.

And, a HUGE ROUND OF APPLAUSE for the San Francisco Celiac Community for making this one of the largest attended cooking sprees yet! And of course, thank you to the Cougars for providing fabulous entertainment!

Testimonials From the Winning Teams:
Anne Louise Santoro is a Registered Dietitian with the American Dietetic Association. She holds a degree in Literature from Harvard University and a degree in Nutrition from the University of Massachusetts at Amherst. Ms. Santoro brings to her nutrition practice over 15 years of experience in the food service industry. She has been a Food Service Manager, Cafe Manager, Pastry Chef, and Vegetarian Cook. She has an on-going private practice as The Food Coach...Your Personal Food Trainer where she provides a variety of nutrition services tailored to meet client's specific needs.

Anne says,  "I had a lot of fun participating in the cooking spree! All the teams seemed to be having a blast cooking their meals with such dedication. I have to say I've never tasted so many delicious gluten-free foods, especially the desserts! I learned so much more about celiac disease by participating in this event. I knew there were classic symptoms, but I had no idea about the extent to which one can suffer from Celiac disease, how it can affect ones life in so many ways. Before the spree I wouldn't have even thought about cross-contamination, but now I see how celiac disease extends beyond the food itself to how it is prepared and under what circumstances."

Nancy Wei is a Registered Dietitian with experience in weight management, diabetes, nutrition during pregnancy and childhood obesity. Nancy's nutrition background ranges from improving health status through individual nutrition consultations to implementing large-scale research studies and public health programs. As current Operations Manager at Revolution Foods, Inc, a company specializing in providing fresh, home-style school lunches, Nancy is passionate about improving access to healthy food and the way children eat. Nancy completed her graduate training in Public Health Nutrition at University of California at Berkeley.

Nancy says, "The Gluten-Free Cooking Spree was a fun and rewarding experience. The moment Chef Glenn handed me the vegetable peeler and the bag of organic carrots, I knew he was going to work us hard! It was wonderful to talk to the guests about the delicious gluten-free food we had prepared and see their satisfied smiles of approval after their first bite of the winning dish. The best way to raise awareness and increase support for the celiac community is to bring together delicious food, medical knowledge, and nutritional expertise, which was exactly what this event did. I learned that you can be really creative with safe grains without compromising taste."

A Celiac Pill: Alba Calls for Participants to Test Effectiveness of AT-1001

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 gluten.

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.

For 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 AT-1001.

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) test. 

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?
The 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 intolerable degree.” 

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:
1.    Age between 18 and 72 years
2.    Diagnosed with celiac disease for more than 6 months
3.    Negative anti-tissue Transglutaminase
4.    On a gluten-free diet for at least six months
5.    BMI between 18.5 and 38

Exclusion criteria—You may NOT participate if you are any of the following:
1.    Current smoker
2.    Has chronic active GI disease other than celiac disease (ex. Crohn’s, Colitis)
3.    Has Diabetes
4.    Unable to abstain from alcohol consumption for 48 hours prior to each intestinal permeability collection
5.  Unable to refrain from consuming non-steroidal anti-inflammatory agents for 48 hours prior to intestinal permeability collection
6.    Participated in any clinical drug study within the past 30 days or has had previous exposure to AT-1001
7.    Presents with or has a history of dermatitis herpetiformis.

If you are interested in participating, please contact: clintrials@albatherapeutics.com 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.

Gluten in Pills: What to look for when Taking Medication

Most of us consider wheat to be something that we find in baked goods. But did you know that the medication you take to cure aches, pains and serious diseases could contain wheat too?

According to the American Society of Health System Pharmacists (ASHP), many prescription and over-the-counter medications contain binders to hold them together. The binders are called excipients and are generally made from wheat, corn, potato, or tapioca starch as well as other unspecified types of starch. If you have celiac disease and you get a pill that is bound with wheat, you may experience a typical celiac reaction.

Excipients are considered inactive ingredients and to date, there are no federal requirements in the United States mandating labeling of inactive substances in medicine; only active ingredients are labeled.

Common excipients include:

• Corn
• Modified starch
• Potato
• Pregelatinized starch
• Wheat
• Tapioca
• Pregelatinized modified starch

Because there is no requirement for labeling inactive ingredients, finding out if medication has gluten in it can be quite a difficult process. To find out if a medication contains gluten, patients typically have to call a drug manufacturer directly to obtain the information.

The process is no easier for pharmacists or physicians in a hospital. Even the drug inserts that come with medication do not contain this information, so pharmacists are left calling the same consumer help numbers at the drug companies to obtain the information.

To highlight the importance of education on the issue, on December 3, 2007, CNN Newsroom Anchor and NFCA Spokeswoman Heidi Collins addressed an audience of 12,000 in-hospital pharmacists at the American Society of Health System Pharmacists Mid-Year Clinical Meeting. Heidi spoke about spending Christmas Eve 2006 in a hospital emergency room. Her five-year-old son, who has celiac disease, had a horrible infection and desperately needed a course of antibiotics. At 11:00pm on Christmas Eve, no one at the pharmaceutical companies was available to tell the doctors if there was gluten in the pills.

Consumer question departments are generally available Monday through Friday during business hours, making it almost impossible to find out the contents of a pill over the weekend or on holidays.

After calling the NFCA to help her locate the information, Heidi’s son received a strong dose of intravenous antibiotics and recovered quickly from his illness and was able to enjoy his Christmas gifts!

Heidi challenged each pharmacist in the room to become educated about the presence of gluten in medication to prevent other families from encountering the same frightening situation that she did.

To help educate the pharmacists, the National Foundation for Celiac Awareness and the American Society of Health System Pharmacists created two informational brochures: one for pharmacists and one for consumers. To download a copy, visit www.celiacentral.org.

Heidi was joined at the conference by world-renowned poet Maya Angelou.

To help patients and pharmacists determine gluten content, several organizations have developed guides:

GlutenFreeDrugs.com is a website maintained by Nationwide Children’s Hospital, Columbus Ohio. It provides information for medications including: analgesics, antibiotics, antidiarrheals, antihistamines, cough and cold, antifungals, asthma, enzymes, eye and ear, nasal sprays, oral contraceptives, oral hypglycemics and vitamins.

Alternative Appetites: Risotto

Alternative Appetites is a new series that focuses on helping you cook meals for special dietary needs. We will show you how to make gluten-free meals for people with celiac disease, dairy-free meals for people who are lactose intolerant, etc. More episodes to come. Enjoy!

View the Risotto Recipe!

Support Celiac Disease Awareness

Shop for a Cause!
Macy's has partnered with the National Foundation for Celiac Awareness to raise funds for awareness and research projects. And, it all involves shopping!

Here's how it works:
Donate $5 to NFCA and in exchange you'll receive a 20% off card from Macys that is valid on purchases on Saturday October 13. You'll be entered to win amazing prizes such as: a $500 gift card for Macys, home appliances, clothing and other incredible items. 

Click Here to join Shop for a Cause!