NOTE FROM ALICE
NFCA Executive Director

Happy Independence Day! I hope that each and every one of you is at the beach enjoying summer vacation!

Now…I know all of you are fantastic with maintaining your gluten-free diet, but even for the best of us cheating during the summer months can be quite tempting with all of the BBQs and picnics. Don't do it!

There are tons of amazing summer foods to eat that are naturally gluten-free—fresh fruits, great vegetables from the farmers market, delicious grilled meats, ice pops, gluten-free beer, pizza and don't forget watermelon! Make sure to check out this month's Chef Note written by Chef Edgar Steele to learn some creative and delicious ways to cook with watermelon!

In other news, National Foundation for Celiac Awareness staff is hard at work educating physicians, chefs and the public about celiac disease! Last week, we held the Philadelphia Gluten-Free Cooking Spree. We had 10 teams of doctors, chefs and news reporters competing to cook the best gluten-free meals. For the first time ever, we had a tie between Coconut Chilean Sea Bass and Gluten-Free Pizza for the winner! Make sure to check our website (www.celiaccentral.org) in the next few weeks to see photos of the event and to print off the delicious recipes from our contestants to decide your favorite!

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BEYOND RICE CAKES
WWW: New Technologies Inspire Celiac Advancement

By Vanessa Maltin
NFCA Director of Outreach & Programming

Do you remember just a few short years ago when having a blackberry was considered "high tech" and only seen amongst the staff of Microsoft or Google. Do you remember when people made plans a week in advance and stuck to them because there were no cell phones to cancel last minute or change the plan??

Thanks to great strides in technology, millions of Americans now walk down the street with their hand-held palms completely engrossed in the latest stock quotes or trying to respond to frantic emails about what needs to be done that very second. There is always someone on a cell phone and during office hours there is rarely a time when we are not all connected to the big WWW (world wide web).

Although for many of us, the Internet has made our lives a hustle and bustle at all hours of the day, for the celiac community, the Internet has provided a new and exciting platform to spread awareness, share gluten-free recipes, educate medical professionals and connect celiacs to other celiacs across the country.

There are YouTube videos, public service announcements, online newsletters, Facebook & MySpace groups, message boards, online vendors and countless other resources on the WWW for celiacs. Here are a few of them:

RevolutionHealth.com

The most recent development is AOL Founder Steve Case using his more than 20-years of experience with the Internet to help educate Americans about celiac disease. Earlier this year, Mr. Case launched RevolutionHealth.com, which was founded to transform how people approach their overall health and wellness. By putting individuals at the center of their own healthcare, Revolution Health will help patients make informed choices and offer more convenience and control over their individual healthcare decisions.

The Revolution Health board of directors is chaired by Mr. Case, and its members include former Secretary of State Colin Powell; former Fortune 500 CEOs Jim Barksdale, Frank Raines, Carly Fiorina and Steve Wiggins; leading venture capitalists/financiers Miles Gilburne, Jeff Zients, John Delaney and David Golden.

Revolution Health currently is focused on:

• RevolutionHealth.com: The cornerstone of Revolution Health is RevolutionHealth.com, a free, comprehensive health and medical information site, specifically designed with the Family's Chief Medical Officer — women and other caregivers — in mind.RevolutionHealth.com offers best-of-breed health information as well as more than 125 online tools aimed at helping individuals take control of their well-being. Revolution Health has partnered with more than 50 companies and teamed with a number of leading health nonprofits and experts to make its innovative approach to health a reality.
  
  
• Insurance: Revolution Health is an unbiased source that enables consumers to easily browse and compare health insurance products, then puts consumers in touch with trusted brokers. Revolution Health provides these services, as well as benefits solutions for corporate America, through its affiliate Extend Health.

On June 19th, NFCA Spokeswoman and CNN Newsroom Anchor Heidi Collins interviewed Mr. Case about RevolutionHealth.com. Mr. Case spoke about celiac disease and the joint efforts of NFCA and Revolution Health to educate people about celiac disease and the gluten-free diet through the Internet and how to galvanize millions of people to get tested.

As a result of the interview, more than 102,000 people visited NFCA's website to learn about celiac disease and thousands filled out the NFCA symptom checklist to show their doctor. (www.doihaveceliac.org).

Bloggers

Talk about community building! The number of celiac bloggers increases by the day! There are people across the country writing daily about their experiences with the gluten-free diet. They offer advice for managing celiac, tips for delicious gluten-free recipes, commentary on new resources and tons of other useful information. Here are some of the most widely read celiac blogs:

Celiac Chicks:
Kim and Kelly (the Celiac Chicks) both have 9-5 office jobs in New York City and somehow manage to maintain one of the most incredible celiac websites out there. Because these girls have two of the most dynamic personalities, they decided to drastically change the "boring" nature of online celiac resources and start a WWW site with enthusiasm! So they started www.celiacchicks.com, as a way to "share our finds and save you the trouble of trial and error."

The celiac chicks try to keep all of the items they review to be gluten-, corn- and dairy-free because Kelly is sensitive to all three. They provide information on everything including: events, conferences, food and restaurants. Kim and Kelly have been amazing supporters of the NFCA and have helped us keep our website in tip-top shape!
www.celiacchicks.com

Gluten-Free Goddess:
Karina Allrich is by all definitions, a Gluten-Free Goddess! Not only does she post incredible gluten-free vegetarian recipes on her blog, but she also contributed the most delicious recipes to the first edition of Beyond Rice Cakes! Karina is also an amazing designer! She has a whole line of clothing and aprons available online. My personal favorite says "Gluten-Free Cupcake." I have the apron and t-shirt and wear them any chance I get!
glutenfreegoddess.blogspot.com

Gastrogirl:
Jacqueline Gaulin of RevolutionHealth is GastroGirl. Now, I know this sounds like a horrible title for a totally cool girl, but Jacqueline owns her title! She keeps people updated on all gastrointestinal diseases and cures for them and has become an active member of the celiac community. She puts a quirky spin on things to help people be less embarrassed to talk about gross things like diarrhea and gas…..On May 4, 2007, she participated on a cooking team at the NFCA Washington, D.C. Gluten-Free Cooking Spree and cooked up a fabulous gluten-free meal! She had so much fun at the event, that she now calls herself a gluten-free wanna-be! So make sure to read her blog to learn about someone who is gluten-free simply because it is the "cool thing to do!!"
http://gastrogirl.blogspot.com/2007/05/confessions-of-gluten-free-diva-wanna.html

Gluten Free Girl:
Shauna James is the GlutenFreeGirl. She started her blog in April 2005 about being diagnosed with celiac in order to share her experiences and stories. Today her blog records her love of food—fresh ingredients, unexpected flavor combinations and seasonal fruits and vegetables. And…for those romantics out there, the blog has turned into a love story. About a year after she started her blog, Shauna fell in love with a chef, who has turned his restaurant gluten-free! So to get some amazing recipes and read a true love story, check out Shauna's blog.
glutenfreegirl.blogspot.com

Other Gluten-Free/Celiac Blogs:
Gluten-Free Fun: http://glutenfreefun.blogspot.com
Gluten Free Journey: http://www.glutenfree-journey.blogspot.com/
Allergic Girl: http://allergicgirl.blogspot.com/
Digestive Diva: http://www.digestivediva.blogspot.com/
Gluten A Go Go: http://glutenagogo.blogspot.com/
Gluten Free Babe: http://www.glutenfreebabe.com/
Don't Need No Stinkin' Wheat: http://www.collegeceliac.blogspot.com/
Gluten-Free Gastro-Gnome: http://gf-gastrognome.blogspot.com/
Sorry, I Can't Eat That: http://glutenfreegabfest.blogspot.com/
I Am Gluten Free: http://www.iamglutenfree.blogspot.com/
The Vegetarian Celiac: http://www.vegetarianceliac.blogspot.com/
Gluten Free MappyB: http://www.glutenfreeindc.com/

National Foundation for Celiac Awareness:

And don't forget the NFCA Website!!

NFCA has pulled together a variety of resources to help you get diagnosed and then manage the gluten-free diet.

For Patients and Healthcare Providers:

• Celiac Sprue Fact Sheets
• NFCA Brochures (to give your doctor)
• Information on Celiac Testing
• Dietary Guidelines (books, recipes, Ask-the-Chef, etc.)
• Celiac Symptoms Checklist
• Support for Patients and Families
• Celiac Centers for Excellence (listing of major celiac centers)
• National Awareness Campaign (ways to get involved)

So make sure to visit www.CeliacCentral.org for more information and to find more ways to become an active member of the celiac community!

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RESTAURANT RANTS & RAVES
Legal Seafood – A Really Good Catch

By Suzy Schurr
NFCA Volunteer

Summer has arrived! As my family pulled our bathing suits out of the closets and headed for the beach, we decided to stop at Legal Sea Foods for some of the finest catch-of-the sea. I'm embarrassed to say that I had never dined there, but thanks to the kind people at the National Foundation for Celiac Awareness, they gave me a great tip.

As I scanned the menu, I already knew that I was going to have to make two visits to the restaurant, because there was so much I wanted to try. Legal Sea Foods recently spiced up its gluten-free menu to include the following:

• Lobster Salad — Salad from the meat of a 1-1.25 lb. lobster
• Surf and Turf — 6 oz. filet topped with cabernet sweet onion butter
• Seafood Casserole — Made with gluten-free crumbs, scallops, shrimp, lobster and scrod baked with cheese and sherry garlic butter
• Baked Stuffed Lobsters — as an extra treat, lobsters can be stuffed with gluten-free crumbs and baked
• Calamari — plain with tartar sauce or Rhode Island style. Pan seared and sautéed in oil, dipped in egg wash and coated with corn meal only – no clam fry mix.

I started my meal with the Rasam Seafood Soup. This tomato and fish based broth was slightly spicy and rich in flavor. In the center floated one large scallop and one large shrimp. In addition to the soup I shared a bucket of steamed clams. They were probably the sweetest, most tender clams I've ever had. The stainless steal bucket of clams was joined by a small bowl of hot broth and a bowl of melted butter for dipping. Pure perfection!!!

For my entrée, I ordered the 1 1/2 pound lobster. It was delivered expertly steamed...the meat was so sweet, just what one would expect of a lobster from New England. My choice of side dishes included the steamed sugar snap peas and a baked potato. Both were very tasty!

I ended my meal with Legal Sea Foods' signature gluten-free dessert, a dense chocolate cake with chocolate frosting and raspberry filling. They also offered fresh fruit and sorbet as gluten-free options.

Legal Seafood is the one of the many restaurants that has been responding to the increase in consumer needs and desires for menus for those with dietary restrictions. Legal Sea Foods offers this Gluten Free Menu in its 30 restaurants along the East Coast in order to accommodate its guests with Celiac Disease.

For a truly great seafood experience, please visit http://www.legalseafoods.com to find a Legal Sea Foods near you.

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CHEF NOTES
Watermelon, It's What's for Summer

By Edgar Steele
NFCA Chef Spokesman

With the scorching days of summer upon us, we all tend to adjust our daily habits little by little as the heat persists. Tank tops and shorts come out of the storage closets, friends and families swarm the beaches, parks blossom with picnic goers, and what better way to celebrate the festivities than with a sweet and juicy wedge of Citrullis Lanatus? Don't know what I'm talking about?? Don't worry! Most folks in the United States refer to this watery nutrient packed fruit as sandia or even simpler: watermelon.

Watermelon is an excellent accompaniment to any sandwich packed in your cooler for a picnic with a loved one. And, if it's a first date, you can literally win the precious heart of that cutie pie by sharing a slice along with some insight on the health strengthening qualities the fruit has to offer. In addition to causing the taste buds in your mouth to scream for joy, a natural ownership of lycopene will keep your hearts beating together through many more summers under the sun.

When it comes to fresh produce, watermelon is the leading source of the antioxidant propertied carotenoid, lycopene. Lycopene has consistently been studied in humans and found to protect against a growing list of cancers including prostate, breast, endometrial, lung and colorectal cancers. The antioxidant functions of lycopene can help protect cells from oxygen damage, which in turn assist in the prevention of heart disease and support a healthy cardiovascular system. The Produce for Better Health Foundation and American Cancer Institute, indicates that "people who eat five or more servings of fruit and vegetables every day have half the risk of developing cancer as those who only eat one or two."

With our hearts beating in healthy rhythm, let's adjust focus to our eyes. If you are eating your daily helping of carrots in hopes of a life free of cataracts, stop! If you are looking to ensure that you will be able to clearly see your soul mate for years to come, simply integrate into your all-natural diet of vitamins A, C and E to… you guessed correctly, watermelon. Studies have shown that eating at least three servings of fruit a day will help to lower vision loss by 35% in adults.

Believed to be natives of Africa, the cultivation of watermelons was first celebrated 5,000 years ago in Egypt, where they were placed in the tombs of many Egyptian kings to nourish them in the afterlife. China was gifted with the discovery of watermelon in the 10th century, and shortly after the discovery of the New World the Western hemisphere was enjoying the 92% water packed fruit as well.

Leading commercial growers of watermelon include: China, Turkey, Iran and the United States. Of the 44 states in the United States that produce watermelon, Florida, Texas, California, Georgia and Arizona are the leaders.

With 1,200 varieties grown worldwide in 96 countries and a highest catalogued weight of 262 pounds, it is unquestionably possible to customize your delicious watermelon experience to fit into any occasion. You may want to recreate Herman Munster's head on Halloween, in which case you can use the green oblong Allsweet variety ranging from 18 to 30 pounds. When preparing a jubilee of goodies for your elderly friends or family, you can avoid the chipping of precious pearly whites or gum aches by selecting the Honeyheart or Icebox varieties of seedless watermelons.

You might want a watermelon of your own, in which case you can embrace a seedless variety such as the Crimson Sweet. This may be an easier venture than you think, as it is as easy as a spit of a seed to grow your own!

Jill Zimorski, the sommelier at Café Atlantico recollects spitting a watermelon seed in the back yard of her house in Charlottesville, NC at the young age of five in the early days of summer. Sprouts emerged from the soil only a week later and within a couple months time a watermelon measuring fourteen inches in diameter was resting atop the lawn ready to be eaten.

How to pick a perfect watermelon:
A telltale sign for the readiness of a watermelon picked from the ground is the presence of a yellowish or creamy toned side of the sphere referred to as the underbelly. This blemish develops over time as the melon rests from its roots and grows. The absence of this underbelly may suggest a prematurely collected melon. When scanning the watermelon pile at the market, base your selection on a neither shiny nor dull melon, which seems heavy for its size. Once in the safety of your home, storage of an uncut melon at room temperature will increase the beta-carotene and lycopene content increasingly over time. Cut melon can be held well wrapped under refrigeration for up to nine days with minimal loss of nutrients.

The following recipes explore traditional and modernized applications for getting the most from your chosen melon.

Tomato Watermelon "Gazpacho"
As seen at Café Atlantico

• 1/2 pound rindless watermelon flesh, cut into small cubes
• 1 pound tomatoes cut in quarters
• 2 tbsp. sherry vinegar
• 1/2 cup extra virgin olive oil
• Kosher salt to taste
• 1/4 cup Greek yogurt
• 6 Cherry tomatoes cut in half
• 2 tbsp. Spanish extra virgin olive oil
• 1 tbsp. small mint leaves
• Fresh ground black pepper

1. Place the watermelon, tomatoes and vinegar in a blender and blend on high speed until there are no lumps. With the blender running, slowly drizzle in the oil. Remove the liquid from the blender and season with salt.
2. Place the soup into four individual serving bowls. Garnish each bowl with a scoop of yogurt, three cherry tomato halves, mint leaves, black pepper, and a drizzle of the oil. Sprinkle some sea salt on the tomatoes and yogurt.

Watermelon Tenderloin

• 1 each seedless watermelon
• 1/2 cup crumbled feta cheese
• 1/2 cup diced tomatoes
• 1 tbsp. fresh lime juice
• Sea salt
• 1 tbsp. small basil leaves
• 2 tbsp. extra virgin olive oil

1. Thoroughly wash the outside rind of the watermelon. Cut a 10"x8"x3" block from the center of the melon. Cut this block into four equal 5"x4"x1.5" parts.
2. Grill the watermelon for approximately 3 minutes on each flat side until slight charring is apparent and the melon is heated through.
3. In a bowl, mix the tomatoes, lime juice, and basil together.
4. Top the grilled watermelon with the feta cheese and tomato salad. Drizzle the oil over the melon, sprinkle with the sea salt and serve.

Tomato and Watermelon Skewers "Ferran Adria"
Compliments of Jose Andres' Book: Tapas a Taste of Spain in America

• 8 "fillets" of plum tomato
• 1/4 seedless watermelon, peeled and cut into eight two-inch cubes
• 1 tbsp. fresh lemon juice
• 1 tsp. grated lemon zest
• 1/4 cup Spanish extra virgin olive oil
• 1 tbsp. sherry vinegar
• Sea salt to taste
• Fresh herbs or herb flowers (such as lavender or borage), optional, for garnish

For the plum tomato fillets:

8 each plum tomatoes

Using a sharp knife, slice off the top and bottom of each of the tomatoes. Locate the fleshy dividing wall of one segment of the tomato. Slice alongside the dividing wall and open up the flesh of the tomato to expose the seeds. Remove the seeds and their pulp by slicing around the core of the tomato. Set the seeds aside. Your aim is to keep the pulp of the seeds together to create tomato-seed "fillets" that are separate from the firmer tomato flesh. Repeat with each segment of the tomato.

For the skewers:

1. Take a bamboo skewer and place a tomato-seed fillet on it. Then place a watermelon cube onto the skewer. Repeat with the remaining seven skewers.
2. In a small bowl, mix the lemon juice, half the lemon zest, the oil, and the vinegar to make the dressing.
3. Place the skewers on a serving plate and pour the dressing on top. Sprinkle with sea salt, the remaining lemon zest, and the herbs or herb flowers (if using). Serve immediately.

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LIFESTYLE
Traveling Abroad on a Gluten-Free Diet

By Rachel Kay
NFCA Intern

Most people with celiac disease dream of a world where doctors and the public know what celiac is and where gluten-free bread doesn't cost an arm and a leg. Although you might find it hard to believe, I assure you that this world DOES exist…just not in the United States. While cautious about traveling within the United States, I have no qualms about leaving the country. Knowledge about celiac is much more common abroad, and gluten-free food is easy to find.

Last year I lived in Scotland for four months and have never had such an easy time living gluten-free. After arriving in Edinburgh, I scheduled an appointment with one of the doctors who cared for students at the University of Edinburgh. I went to the appointment with trepidation, as my previous experiences with physicians at universities have been painful and frustrating. My worries were in vain. Not only was my doctor quite knowledgeable about celiac but she was also able to write me a prescription for all of the gluten-free foods that I would need. Can you imagine?! Gluten-free bread, crackers, cookies, pasta and cake all by prescription! My doctor told me that gluten-free food is the medication for celiac disease, so why shouldn't it be provided as a prescription like any other medication?

Throughout my time in Scotland, all of the waiters, bartenders, friends and even a very friendly taxi driver that I chatted with knew about celiac disease, and they were able to help me with my gluten-free diet. It was amazing!

Going to the grocery store was no longer a chore that took hours either. Foods were all clearly labeled as gluten-free, and if they contained any other allergens, high amounts of sodium, etc. My nearby Tesco (the English equivalent to Safeway) even had an aisle of gluten-free food. Not just one or two hidden shelves, but a whole aisle.

Although traveling with celiac disease seems like a terrifying undertaking, it doesn't have to be. Celiacs do have complete control over where they are traveling, if not the process of getting there. Travel, especially outside of the United States, can be a fun and easy process, even with a restrictive diet. Having celiac is only a small part of who you are as a traveler. If your adventurous spirit is telling you to visit places outside of America, don't let celiac stop you. You might be surprised at what you find.

Here are some travel tips to ensure a safe and fulfilling vacation:

1. Always plan ahead.
2. Call the hotel or facility where you are staying and explain your dietary requirements fo they have time to prepare for your arrival. This includes calling the airlines so they can have a gluten-free meal ready for you.
3. Always carry food with you. Some easy-to-carry items include: trail mix, nuts, fruit or energy bars.
4. Before leaving home, go online and look up celiac support groups in the location you are traveling to. They will have information on gluten-free friendly restaurants and grocery stores that you can visit.

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CLINICAL OUTLOOK
Diseases Related to Celiac, What are They and What to Look For

By Rachel Kay
NFCA Intern

As celiacs we already have to maintain a vigilant guard over what we eat and how we are feeling. But what happens when removing gluten from your diet is not enough? Many celiacs still feel sick long after going on a gluten free diet, when this occurs some celiacs feel that this is an indication that gluten is not the culprit that is causing them pain. The more likely reason behind their continuing problems is the presence of another disease or problem that was never diagnosed, such as mineral deficiencies, food allergies or other complication of celiac. Because celiac disease is an autoimmune disorder, celiacs are at higher risk of developing other autoimmune diseases, especially when diagnosed later in life. Celiacs may also suffer from lingering affects of poorly absorbing nutrients for years before their diagnosis along, varying food allergies, as well as other complications of having uncontrolled celiac disease.

Problems and Symptoms to Watch for:

1. Allergies (Food)-an immune response that creates antibodies to fight a particular food allergen.

   Symptoms: tingling on lips, tongue or throat, difficulty breathing, runny nose, itchy skin rash, swelling, abdominal pain, nausea, diarrhea, and vomiting

2. Anemia- occurs when there is a deficiency of red blood cells and/or hemoglobin, can be caused by folate or iron deficiencies.

   Symptoms: weakness, fatigue, inflammation/soreness of tongue, brittle nails, pale skin, shortness of breath, headache, cold hands/feet, cravings for non-nutritive substances (ice, dirt, pure starch), and poor appetite

3. Arthritis (Rheumatoid)- a disease of the joints when the membranes or tissues lining the joints become inflamed, eventual destruction of joint tissue is possible

   Symptoms: pain, stiffness and swelling in the joints of the hands, wrists, elbows, feet, ankles, knees or neck. In rare cases the eyes, lungs, heart, nerves, or blood vessels may be affected.

4. Dermatitis Herpetiformis-a chronic, extremely itchy rash consisting of papules and vesicles that is associated with celiac disease

   Symptoms: chronic, itchy rash, usually found on elbows, knees, back and buttocks

5. Diabetes (Type I)- an autoimmune disease in which the body destroys the insulin-producing beta cells in the pancreas causing the pancreas to stop producing insulin

   Symptoms: increased thirst, increased urination, weight loss, increased/loss of appetite, flu-like symptoms, flushed, hot dry skin, abdominal pain, vomiting, strong fruity breath odor, fast and shallow breathing, restlessness, drowsiness, and difficulty wakening

6. Down Syndrome-a genetic disorder that causes mental retardation and affects as many as one in 800 children born

   Symptoms: distinct facial appearance (flattened facial features, protruding tongue, small head, upward slanting eyes, unusually shaped ears), poor muscle tone, broad short hands with a single crease on the palm, excessive flexibility

7. Osteomalacia (Rickets)- an abnormal bone formation (most common in children) resulting from inadequate calcium in the bones

   Symptoms: delayed sitting, crawling and walking in children, pain when walking, development of bow legs, and decreased height

8. Osteoporosis (also, Osteopenia)- weak, brittle bones caused by low levels of calcium, phosphorus or other minerals in your bones

   Symptoms: often symptomless in early stages, back pain, loss of height over time with stooped posture, fracture of vertebrae, wrists, hips, or other bones

9. Sjogren's Disease ("SHOW-grins")- a disorder of the immune system often defined by its two most common symptoms - dry eyes and a dry mouth—that often accompanies other autoimmune disorders

   Symptoms: difficulty swallowing, dental cavities, light-sensitive eyes, corneal ulcers, dry eyes, dry mouth, fatigue, fever, enlarged parotid glands, change in sense of taste, hoarseness, oral yeast infections (candidiasis), irritation and mild bleeding in your nose, skin rashes or dry skin, vaginal dryness, dry cough, joint pain, swelling and stiffness

10. Turner Syndrome- a chromosomal abnormality affecting about one in 2,500 girls

    Symptoms: short stature, "webbing" of the skin of the neck, low hairline at the back of the head, low-set ears, abnormal eye features, abnormal bone development, absence of menstruation, lack of breast development, infertility, excessive amount of skin moles

11. Thyroid disease (Hashimoto's, also hypothyroidism)- an auto immune disease where the body's own antibodies attack the cells of the thyroid

    Symptoms: poor muscle tone, cold intolerance, constipation, weight gain, depression, muscle cramps and joint pain, muscle aches, thin, brittle nails and hair, abnormal menstruation, and a puffy face

12. Williams Syndrome- a rare genetic condition which causes medical and developmental problems

    Symptoms: distinct facial features (small, upturned nose, long philtrum, wide mouth, full lips, small chin, puffiness around eyes), heart and blood vessel problems, hypercalcemia, low birth-weight/low weight gain, feeding problems in babies and young children, frequent hernias, hyperacusis (sensitive hearing)

This list is by no means comprehensive, if you have been strictly adhering to the gluten free diet, but still do not feel better, the best thing to do is TALK TO YOUR DOCTOR. Also, it is important to stay on a strict gluten free diet if you have been diagnosed with celiac disease, even after you begin to feel better. Celiac disease currently has no known cure and it is not something you "get better" from, life-long adherence to the gluten free diet is vital in order to maintain your health and quality of life.

References:

•   The Nemours Foundation/Kids Health
•   Healthnotes, Inc.
•   Healthwise.com
•   National Organization for Rare Disorders
•   Mayo Clinic
•   Mayo Clinic
•   Healthnotes, Inc.
•   Healthwise
•   The Sjogren’s Syndrome Foudnation
•   The Turner Syndrome Society
•   Mayo Clinic
•   The Williams Syndrome Association

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CLINICAL OUTLOOK:
Celiac Studies

Increased Risk of Death in Celiacs Diagnosed as Children
Brief: A study by at the University of Nottingham found that celiacs diagnosed as children have an increased occurrence of mortality due to violence, suicide, accidents, cancer and cerebrovascular disease. The study tracked 285 children and 340 adults who had been diagnosed with celiac disease in the Lothian region of Scotland.

To read this study visit:
http://www.medscape.com/viewarticle/555671

Genetic Risks for Celiac Disease
Brief: An international research study investigating the causes of intestinal inflammatory conditions has identified a new genetic risk factor for celiac disease. The study, lead by David van Heel a Professor at Queen Mary, University of London, found that celiacs often lack a protective DNA sequence in a specific gene region that is otherwise found in healthy individuals.

This study has found that celiacs often lack a protective DNA sequence in the interleukin-2 and interleukin-21 gene region. Interleukin-2 and interleukin-21 are cytokine proteins secreted by white bloods cells that control inflammation, and both have been implicated in the mechanisms of other intestinal inflammatory diseases.

To read the full study visit:
http://www.nature.com.proxygw.wrlc.org/ng/journal/vaop/ncurrent/index.html

Non-Responsive Celiac Disease due to Inhaled Gluten
Brief: This study evaluated two patients who had nonresponsive celiac disease after having been on a gluten free diet. Both patients still showed chronic symptoms and histological changes from celiac but had adhered to a strictly gluten-free diet. Both patients worked on farms where they feed gluten-containing grain to livestock on a daily basis and were likely inhaling dust particles with gluten in them, thereby aggravating their symptoms even when no gluten was being ingested with their diets. Wearing face masks greatly improved symptoms and histological results for both patients.

To read the full study visit:
http://content.nejm.org/cgi/content/short/356/24/2548

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AWARENESS ADVOCATE OF THE MONTH

By Nancy Ginter
NFCA Director of Operations

Lucie Daigle
NFCA Volunteer Chair, Gluten-Free Cooking Spree - Philadelphia

Bonjour!

This month, the National Foundation for Celiac Awareness (NFCA) is very pleased to honor Lucie Daigle as the Awareness Advocate of the Month.

Hailing from the province of Quebec, Canada, Lucie brings her Canadian healthcare training to the celiac awareness venue. This is a perfect fit, as the Canadian system focuses on health promotion and disease prevention rather than the "disease and curative" model used in the US. Lucie's nursing training at McGill University was focused on the impact that illness/wellness can have on the entire family.

Serving as a teacher in nursing school makes working with NFCA a good volunteer opportunity. After all, raising awareness involves "teaching" healthcare professionals and the general public about celiac disease, its associated disorders, and the way forward to a healthy lifestyle.

A big draw for Lucie in the field of celiac disease is that there is a "natural" treatment. There is no need for a pharmaceutical "cure" or an invasive intervention—just a gluten-free diet for life.

Lucie's involvement with NFCA stems from her enduring friendship with Alice Bast, NFCA's founder and executive director. This year, Lucie decided to "get back to her roots" in healthcare and began to look for meaningful opportunities in the public health arena. Learning about NFCA and the goal of raising awareness of celiac disease, Lucie decided to volunteer in this field where she knew she truly could make a difference.

And, what a difference she has made!

Most recently, Lucie served as the very able chair of the NFCA Gluten-Free Cooking Spree held in Philadelphia on June 23rd at the Hyatt Regency at Penn's Landing. Leading a team of energetic volunteers, Lucie staged an evening of fabulous gluten-free food and beverages, a cooking competition and raising awareness of celiac disease all with a fabulous musical accompaniment.

Lucie Daigle, NFCA volunteer, and Dorothy Binswanger, NFCA Board of Directors, with John Ingersoll, co-owner of the Chestnut Hill Cheese Shop, a supporter of NFCA and our events, as pictured in a recent article in the Chestnut Hill Local. To read more, go to the NFCA website at http://www.celiaccentral.org/News/News/Celiac_Disease_News/240/vobId__1445/

In sharp contrast to her career in nursing and public health, Lucie is a professional musician performing at functions throughout the Philadelphia Area and beyond. She plays in a band with her very musical husband, Philadelphia attorney Richard Tuttle. Music runs in the Daigle-Tuttle family. Lucie's daughter, Catherine Tuttle, is a professional singer/songwriter with a CD entitled "What They Will Find" to her credit. For ten years, Lucie left healthcare temporarily to work in the music business managing her daughter's career.

Lucie's performance skills serve her well as she meets the public in raising awareness for celiac disease. One of her primary goals as an NFCA volunteer is to work with healthcare professionals to make sure that celiac disease is on their diagnostic radar. She has heard far too many stories about celiac sufferers who went from doctor to doctor without having their symptoms recognized, a situation she believes can be remedied with good publicity and perseverance.

Asked what her dream for the future of celiac disease, Lucie responded immediately by saying. "I want celiac disease to be so well known that it would be caught at the very beginning to prevent complications and unnecessary suffering." Of course, she hopes for much more research. Since we know the trigger for celiac disease, she knows that there can be advances elsewhere for other autoimmune disorders. And, she wants more research into the benefits of a gluten-free diet beyond celiac disease. She truly believes that the positive impact of this way of life is yet to be discovered. Best of all, it is a treatment that is non-invasive!

We thank Lucie for her energy and enthusiasm and, even more, for sharing her expertise with NFCA and our associates across the country. Lucie is an exemplar of volunteerism and advocacy at its finest.

Merci, Lucie!

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