NOTE FROM ALICE
NFCA Executive Director
November is here, and the holiday season is swiftly approaching! I hope you are looking forward to all the warmth, excitement, and love that embodies this magical time of year.
The holidays aren't just a wonderful time to make merry and indulge in festive gluten-free holiday foods, but a time where we reflect and give thanks for the many blessings in our lives. This season of celebration is also a time where we can make an effort to give generously as a way of capturing the holiday spirit.
Here at the NFCA we are incredibly thankful for all of our donors and supporters. Our mission to raise awareness for celiac disease has come a long way, and we continue to make huge strides. We appreciate everyone who has supported us in this campaign, and for those who have backed our organization throughout the years.
With all of the progress and success we have experienced in 2008, we still have a long way to go. We hope that in the spirit of charity this holiday season you will donate to the NFCA. Distributing three quarters of a million "Do I have Celiac" brochures to over 1,000 medical professionals, gluten in medication seminars with the American Society of Health-System Pharmacists, growing our GREAT initiative, educating professionals in the gluten-free lifestyle, and creating Athletes for Awareness public service announcements; your donation will allow us to continue our efforts of education and outreach as we strive to gain prompt and accurate diagnosis for the three million Americans who suffer with this disease.
Thank you to those who have already donated to the NFCA for your help in restoring health and reclaiming the lives of those affected by celiac disease. Thank you in advance to those who continue to support the NFCA in its ongoing endeavors. On behalf of everyone at NFCA, I wish you the happiest, healthiest holiday season!
To donate now, please visit www.beyondceliac.org.
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BEYOND RICE CAKES
At-Home Celiac Test Coming Soon to U.S. Market
By Vanessa Maltin
NFCA Director of Programming & Communications
One of the most common complaints I hear from patients is "my doctor won't test me for celiac disease."
These are patients who have clear symptoms of celiac disease and should be screened, but can't get a doctor to acknowledge that celiac is one of the most common conditions in the United States and affects more than 3 million people!
The good news is that within the next year, patients could be able to accurately and easily screen themselves for celiac disease from the comfort of their own home. And, it won't cost a fortune...only about $50.
For the first time, Health Canada has approved the Biocard Celiac Test Kit, an at-home test that measures (anti-tTG) IgA antibodies from a fingertip blood sample. The U.S. FDA is currently evaluating the test and is expected to grant approval in the United States sometime in 2009.
The test comes from 2G Pharma and was developed by two women who are best friends and worked for years in the corporate pharmaceutical world. Their closest friend was diagnosed with celiac disease after more than 10 years of severe suffering from celiac and almost bleeding to death from intestinal damage. The ladies used all of their skills to find and bring to market a test that would prevent anyone from suffering the same pain their friend had while trying to get a celiac diagnosis. The Biocard Celiac test has been approved in Europe since 2005.
So, how does the test work? The Biocard Celiac Test measures the presence of antibodies in the blood. Certain antibodies in a person's blood indicate whether or not the body is having an immune system response to the presence of some foreign substance. For people with celiac disease, the foreign substance is gluten!
The test is simple and quick to administer! And, the company even created a video with step-by-step instructions so that you will be sure to take it correctly. Just be sure that you are consuming a diet containing gluten in order to obtain accurate results.
To take the test, start by setting up all of the different parts of the kit. Gently massage your index finger to drive blood to it. Then wipe your finger with an alcohol swab and let it dry. Prick your clean fingertip with the lancet that is included in the test kit. It is a very small needle, so it is practically painless. Gently press the blood out of your fingertip into the vile and mix it with the included buffer solution. Turn the vile upside down and mix the blood and buffer together. Then squeeze three drops of the blood/buffer liquid into the sample holder. Wait 10 minutes to read results.
The Biocard Celiac Test is positive if you have two red lines on the test card. One red line appears in the control field, which indicates that you have done the test correctly. The second red line will only appear if you are having an immune system response to the gluten protein. If the test comes out positive for celiac disease, the makers of the test recommend consulting with a doctor to confirm the diagnosis with an intestinal biopsy.
How reliable is the test? According to the creators at 2G Pharma Inc., the test is as accurate as a tissue transglutaminase (tTG) laboratory test that your doctor would request and uses the same technology to detect specific IgA antibodies that react with tissue transglutaminase (tTG), a well known indicator of celiac disease. The test has been approved by Health Canada and meets all of the European medical device requirements for a home test.
Additionally, a study published in the British Medical Journal found that the simple rapid antibody test allowed nurses working in primary care medical offices to detect celiac disease in patients who were not picked up during routine clinical care. The study evaluated 2,690 children around six years old and 120 nurses. The study found 31 newly diagnosed celiac patients. The rapid test accurately detected celiac disease in 30 of the 31 patients.
The Biocard Celiac Test is a landmark development for the entire celiac community. It is the first time that patients will have immediate access to find out if they have the autoimmune disorder. It makes celiac disease as easy to diagnose as strep throat! It will also allow for simple mass screening, especially amongst family members of those already diagnosed.
So, be sure to check back soon—I'll have all of the details for when the test becomes available in the United States and how you can get it! Also, be sure to keep visiting the National Foundation for Celiac Awareness website to find out how 2G Pharma will be working with the NFCA on several programs in the United States next year!
Vanessa Maltin is the author of Beyond Rice Cakes: A Young Person's Guide to Cooking, Eating & Living Gluten-Free. Read more at www.BeyondRiceCakes.com.
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Study Verifies Link Between Celiac Disease & Thyroid Disease
By Vanessa Maltin
NFCA Director of Programming & Communications
Research to better understand celiac disease is underway around the globe. With each published study we learn more about how the autoimmune disease affects patients and how groundbreaking therapies may, in the near future, make it easier to manage a gluten-free diet.
This fall there was one study in particular that peaked my interest.
The research was published in the October issue of the Journal of Clinical Endocrinology & Metabolism and examined the risk of thyroid disease in patients with celiac disease.
Before I get into the results, let's take a step back and understand what thyroid disease is, how it is diagnosed and treated.
The thyroid is a small gland located in the middle of your lower neck. Its primary purpose is to control your body's metabolism by producing hormones that regulate the amount of energy the body needs to use in order to maintain a functioning metabolism rate.
There are several different types of thyroid disease. Autoimmune Thyroiditis, also known as Hashimoto's thyroiditis, is the most common type of thyroid condition. Patients with this type of thyroid disorder experience enlarged thyroid glands that do not produce enough hormones. This causes the body to use energy slower than normal.
Conversely, Graves Disease causes hyperthyroidism, which is when the thyroid is overactive and produces too much hormone. This causes the body to use energy much faster than it should.
The most common symptoms of thyroid disease are similar to those associated with celiac disease and include:
- Abnormal menstruation
- Weight gain or loss
- Dry and coarse skin & hair
- Intolerance to cold
- Muscle weakness
- Vision problems (eye irritation)
Although anyone across all ages, races and genders can develop thyroid diseases, women are five to eight times more likely to develop a thyroid complication than men.
Now, back to the study so you can better understand how this might relate to you or a person you know with celiac disease!
For the study, researchers from the Department of Pediatrics at Orebro University Hospital in Sweden evaluated 14,021 patients with celiac disease and 68,068 healthy individuals. After thorough evaluation, the researchers found that patients with celiac disease were 4.4 times more likely to develop hypothyroidism, 3.6 times more likely to develop thyroiditis and 2.9 times more likely to develop hyperthyroidism than their healthy counterparts.
If the data amongst adults wasn't enough to shock you, the data was even more shocking for children. Celiac children were 6.0 times more likely to develop hypothyroidism, 4.7 times more likely to develop thyroiditis and 4.8 times more likely to develop hyperthyroidism!
The researchers concluded that celiac disease is in fact related to thyroid disease and that patients with celiac disease are more likely than healthy individuals to develop hypothyroidism, thyroiditis, or hyperthyroidism.
So what does this mean for you? If you experience symptoms that you think might be linked to thyroid disease, talk to your doctor immediately. There are several treatments available, so as always, don't wait...get tested!
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Malt Flavoring: What is it and how can you avoid it?
By Christina Gentile,
NFCA Volunteer Staff Writer
Removing gluten from the diet is not always easy. Sometimes we think we are eating gluten-free items, but learn later that when we feel sick that there was some form of hidden gluten ingredient. For example, grains are used in the preparation of many foods and it may be difficult to know by looking at the label what grain was used. Luckily, there are ways to decode nutritional labels; you just have to know what to look for.
One hidden source of gluten to look out for when reading ingredient lists is called malt flavoring. It can easily be overlooked when doing a quick scan. Malt flavoring is made from the processing of grains and comes primarily from the drippings of barley during processing. Barley is not a gluten-free grain and therefore, malt flavoring should be avoided.
However, there are times when malt flavoring is derived from corn. In this case, the label will specify that the malt flavoring is made from corn and it usually will say corn in parenthesis following the phrase "malt flavoring." So how can you be certain to avoid malt flavoring? Easy! If the item does not specify it is malt flavoring made from corn, then put it back and walk away; it is unfortunately not gluten-free! However, if it contains malt flavoring and specifies corn, and the overall product is free of gluten containing grains, you have found a winner!
When I think of malt flavoring and foods that it can be found in, I think of cereal products, nutrition and sports bars, candy, and beverages. However, just as there are ways to replace gluten-free flours, there are ways to get around malt flavoring. Cereal products, like Kellogg's Rice Krispies and Kellogg's Rice Krispies with berries contain malt flavoring.
Alternatives to these cereals include Erewhon's Rice Twice Cereal, Erewhon's Crisp Rice Cereal, and Erewhon's Crispy Brown Rice Cereal with Berries. In addition, General Mill's Chex Cereals such as Corn Chex, Wheat Chex, and Chocolate Chex can be replaced with their Gluten-Free Rice Chex cereal. And if you want to add flavor and variety to the rice chex, try adding cocoa powder, cinnamon, or toasted almond for an extra special treat. For an on-the-go snack or meal, a nutrition or sports bar is an easy thing to grab. Alternatives to popular bars such as Power Bars are Think Thin Bars and Balance Pure Bars (Cherry Pecan, Banana Cashew, Chocolate Cashew). Beverages to avoid would be beer because malt is added during fermentation, malted alcoholic drinks such as wine coolers, and chocolate malt dessert drinks. If you are over 21, there are some gluten-free beer companies such as Lakefront New Grist, Ramapo Valley Passover Honey Beer and Redbridge from Anheuser-Busch. If you have a taste for chocolate malt drinks, try a gluten-free concoction by eliminating the use of malted milk powder and adding a favorite gluten-free chocolate candy to jazz it up! For example, Hershey's Chocolate Syrup is gluten-free and can be used to make chocolate milk.
I hope these tips and alternatives are helpful and spark new ideas and creativity to get around gluten containing foods. Just remember: always scan the ingredient list to look for gluten containing flours and malt flavoring (or even malt)! And read the label slowly and carefully so you do not skip over any ingredients.
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GLUTEN-FREE ON A BUDGET
Gluten-Free, Fresh & Delicious: Laughing Cow Green Pea Risotto
By Vanessa Maltin,
NFCA Director of Programming & Communications
Some nights there just really isn't time to plan ahead for dinner! This month I've had five business trips and have spent more nights in hotels than at home, so my refrigerator is pretty empty! Last night I was desperate for something that was filling and somewhat nutritious, so I made my favorite standby risotto and dug through my freezer to find a bag of frozen green peas to add at least a little bit of a vegetable to my meal!
As I opened the refrigerator to get out chicken stock, my eye caught a package of Lite Laughing Cow Garlic & Herb cheese. The cheese is naturally gluten-free and has only 35 calories per triangle piece. The lightbulb went on in my head and I decided to use the cheese as an extra creamy flavor in my risotto. It was thick, creamy, filling and absolutely delicious!!
- 6 tablespoons olive oil
- 1 cup yellow onion, diced
- 2 cloves fresh garlic, minced
- 1 1/2 cups Arborio rice
- 3 cups vegetable stock
- 1 cup frozen peas
- 2 cups dry white wine
- 3 triangles Laughing Cow Garlic & Herb cheese
- Salt, to taste
- Pepper, to taste
In medium-sized saucepan heat 3 tablespoons of olive oil. Sauté onions and garlic in oil until they begin to brown. Add rice and remaining olive oil and allow to brown for 2-3 minutes, stirring constantly.
Slowly add vegetable stock one cup at a time and allow liquid to absorb before adding more. After adding 3 cups of vegetable stock, add in frozen peas.
Add in white wine gradually, allowing time for liquid to absorb. After adding second cup of white wine stir in Laughing Cow Garlic & Herb cheese. Allow cheese to melt for about two minutes while stirring constantly. Add salt and pepper to taste. Once cheese is fully melted and liquid is absorbed, remove from heat. Allow to cool for 2-3 minutes before serving.
See more low-cost gluten-free recipes at www.GlutenFreeonaBudget.com.
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ATHLETES FOR AWARENESS
NFCA Launches Athletes for Awareness Program
By Emily Freedner,
NFCA Staff Writer
There is no doubt that celiac can be a challenging disease. Sometimes it's hard to find food to eat when on the go while trying to maintain a balanced and nutritious diet. Imagine trying to do that while being a professional athlete! It's not impossible! In fact, for Sarah Jane Kenyon, A.J. Clemens, Bill Mulroy and Michael Danke, that's just life! It is my pleasure to introduce our newest blog, Athletes for Awareness! These four athletes, and hopefully more in the future, will work to spread awareness about celiac disease and share what it's like to be an active athlete on a gluten-free diet. We know there are lots of athletic people living with celiac disease and this is a great place to get tips from the pros, hear their stories and share in their experiences!
Our first Athlete for Awareness is Sarah Jane Kenyon. Sarah is a native Australian and started playing golf at the young age of 12. She quickly showed promise and by age 13 she was competing in tournaments all across Australia. In 2002 she was the Australian Junior Champion and in 2003, winner of the Queensland 72-hole Championship. She finished 10th in the 2004 Australian Open and competed in the 2006 U.S. Women's Open Championship. Now, at 23, Sarah is competing as a member of the LPGA tour, all while managing a gluten-free diet!
Sarah was only recently diagnosed with celiac disease. She was experiencing 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 it might be celiac because her mother, Sharon, has celiac disease.
Before Sarah knew she had celiac, she lived on Panera and Quiznos while traveling to tournaments. Now she says she plans ahead by keeping fresh fruit, vegetables and rice cakes with her on the golf course. She is also lucky that the LPGA tour organizers always keep healthy foods on hand for the players to eat.
Now, 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! 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.
Our second athlete is A.J. Clemens. He is an individual living with celiac, a student, a year round athlete and a very accomplished skier! A.J. is a member of the USSA and the Pennsylvania Racing Association. He represented the NFCA in the Pennsylvania State Championship for Skiers and placed 23rd overall in the Men's Slalom! He also competed in the Sno Mountain Combined Challenge in Scranton, PA on March 11-12. He had a fabulous run finishing first in the Giant Slalom and second in the Slalom. The result: A.J. became the overall first place winner of the 2007 Sno Mountain Combined Challenge! He also won a place on the Pennsylvania Alpine Racing Association 2007 State Team, finishing eighth overall in the state of Pennsylvania!
A.J. was diagnosed with celiac at a young age. At five, he slowly stopped growing, his hair started to fall out and he began to grow a potbelly. He began seeing the nurse and going to the hospital on a regular basis because he was so ill. He was repeatedly told he had the flu and that it would subside. It was around this time that he was diagnosed by a specialist at the Children's Hospital of Philadelphia. Now healthy and maintaining a gluten-free diet, A.J. has accomplished many things and has learned many tricks to keeping nourished on the go; all which he will share with you as another of our athletes for awareness!
Bill Mulroy is our cycling athlete for awareness! He is a 38 year-old competitive cyclist from Scottsdale Arizona. He started mountain biking 12 yrs ago in the desert and mountains around Arizona and began road cycling four years ago. He has competed in many events, including 24 hour mountain bike races, multi-day stage races at high altitudes, and 100 mile + road races. He was diagnosed in February of 2008 with celiac disease, after tests showed I had low bone density, iron and hematocrit. Being diagnosed with celiac disease changed Bill's life and he can't wait to share his experiences on the Athletes for Awareness blog!
Last but not least, Michael Danke is our star runner. After being anemic his entire life without responding to high doses of iron supplements, Michael was on a work trip when he got so sick he was admitted to the hospital. After that he started seriously looking into the cause of his condition. He saw a hematologist, but was simply told what he already knew: he was anemic. While all of this was going on, Michael was training for a marathon, but felt he wasn't recovering well after his practice runs. Michael finally decided it was time to consult a gastroenterologist. After a colonoscopy/endoscopy, he was finally diagnosed with celiac. He also learned that he had osteoporosis.
Michael went on the gluten-free diet and was amazed at how his body and energy level changed. Even his wife noted that after his Sunday runs he didn't fall asleep anymore. Thinking back over events in his life, it all made sense to him that celiac had been the cause all along! You will be able to read lots more about Michael and how being on a gluten-free diet has improved his running on the blog!
Stay tuned because this fantastic blog will be up and running shortly!
The Athletes for Awareness program is generously sponsored by: Blue Diamond Natural
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TRAVELING ON A GLUTEN-FREE DIET
A Gluten-Free Trip to Washington, DC
By Abby Schwartz,
NFCA Volunteer Staff Writer
My husband and I successfully bid on a weekend package to Washington, D.C. at a recent charitable fundraising event. We decided to turn it into a family mini-vacation and bring our daughter who is almost 12 and has celiac disease. Because our families are spread out over several states, our vacations usually involve staying with relatives. This affords us a certain comfort level when it comes to meals; we can bring along gluten-free pasta, cereal and other foods and we have the reassurance of knowing we can cook a meal whenever we need to.
Our weekend in D.C. would be an adventure in what I like to call "flying without a net." We would bring no food with us. Like any wise celiac mom, I did some research in advance so we could have a game plan when it came to meals. Our auction package came with a gift certificate to a restaurant called Nora. I learned on their web site that Restaurant Nora was America's first certified organic restaurant and that their everchanging menu is created around fresh, seasonal organic foods that are healthy and balanced. Knowing that most of the gluten-free food we buy at home comes from organic food stores, I knew that the staff at Nora probably had some familiarity with the gluten-free diet, and at the very least, were cooking with fresh, whole ingredients and could modify a dish upon request. One phone call confirmed this for us and we happily made reservations for dinner.
Nora took care of Saturday night, but we still needed a restaurant for Friday night, plus some ideas for lunch on Saturday. I remembered that the official chef for NFCA is Edgar Steele, and that he worked at a restaurant in D.C. called Café Atlantico. Their website describes their food as Nuevo Latino Cuisine. They also mention online that they can accommodate dietary restrictions, including gluten. Bingo! I made reservations and moved on to the search for possible lunch spots.
In addition to visiting the national monuments, we knew we wanted to visit at least one Smithsonian museum (there are 19 total). If you visit www.si.edu and click on the "visit" button, you can find a link to their dining page, which describes all of the cafes and food stands within each museum. I noted that the National Air and Space Museum had a McDonalds and Boston Market on site and decided they would provide a safe fallback if needed. While researching gluten-free dining in D.C., I also discovered a chain of restaurants with several locations in the area. Austin Grill offers Tex-Mex cuisine and provides a substantial gluten-free menu upon request. With a plan in mind, we were ready to go.
Café Atlantico is a funky, cool restaurant in the Chinatown section of D.C. They have an active bar scene and an avant garde menu. We realized, at first glance, that this was not a place you typically bring children. To their credit, the staff did not give us any indication that our daughter (I will refer to her as "S.") was anything but welcome. They were gracious and accommodating, and the bartender even whipped her up a Shirley Temple to sip while we drank some wine. We started with an order of guacamole prepared tableside (yum!). This is normally served with homemade tortilla chips. We were not able to determine easily if the chips were safe to eat (it was a question of cross-contamination in the fryer) so S. ate hers with a spoon and a big smile on her face. They are also able to prepare jicama slices to wrap the guacamole up like raviolis.
There were lots of options on the gluten-free menu, but because the food itself was a little sophisticated for a pre-teen's palate, we decided to order several different items from the appetizer and entrée menus to increase the odds of finding something S. would enjoy. She is not intimidated by different foods and tried an assortment of food including "pizza style" oysters with tomato sauce, garlic oil, aged parmesan and basil mayo; grilled octopus with warm strawberries and arugula; and her favorite, the duck confit. Our waiter was extremely helpful and spoke with the chef several times on our behalf to inquire about different items, including the delectable dessert choices. S. happily chowed down on the white chocolate mousse served with white chocolate hazelnut ice cream and coffee gelée. They simply left off the streusel topping that typically comes with it.
S. also loved the sip I offered her from my Mexican hot chocolate and ordered her own.
The next night we had our appetites ready for dinner that night at Nora, a beautiful restaurant in the Dupont Circle area. Our waitress helped point out the foods that S. could choose from (no separate menu, but it was just as easy to manage with her help). She decided on the spicy crab salad appetizer, followed by the chicken roulade stuffed with a ricotta arugula filling. For dessert she devoured the crème brulée and did not give her deserving parents a single bite!
Sunday morning, after checking out of our hotel, we drove the 25 minutes to Bethesda, a lovely suburb of Maryland to the wonderful Lilit Café, a favorite of ours that serves a delicious selection of gluten free gourmet sandwiches, pizza, crab cakes and desserts, including a large variety of gelato. S. and her dad shared the gluten-free Classic Italian sandwich: ham, Genoa salami, pepperoni and provolone with oil and mayo on terrific GF bread. They also split the GF Margarita pizza topped with fresh tomatoes, mozzarella and basil, shredded mozzarella and tomato sauce. Fantastic! We had enough left over to wrap up three slices to take home. S. made room for dessert, too: hand-dipped scoops of coffee and caramel Italian gelato. We also loaded up on take-out from their grocery section and picked up four loaves of our favorite sandwich bread made by the local Sweet Sin Bakery, along with individual desserts: pecan tart and chocolate mousse.
The weekend was a delicious success and one we'll happily repeat come spring.
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