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Family members often share many of the same physical characteristics or personal traits. At one point or another, we’ve all heard that we inherited Grandpa’s nose, Mom’s eyes or Dad’s sense of humor. What many people don’t realize is that celiac disease also is hereditary.
Celiac disease is a genetically based condition, meaning that it runs in families. The risk of developing celiac disease increases 5-10 times when you have a family member with the disease. Despite this increased risk, some family members may be resistant to getting tested. Coming face to face with a life-changing autoimmune disease is a scary experience, but many do not realize that untreated celiac disease can lead to life-threatening conditions, such as cancer.
I know from experience how difficult it can be to talk to your family about getting tested. Following my diagnosis, I encouraged my family to get tested, too. My brother learned that he doesn't have celiac disease, but he does have non-celiac gluten sensitivity – something he never would have discovered had I not asked him to see a doctor. Now, he has adopted a lifelong gluten-free diet and is feeling better than ever.
Your family may need some more convincing. That’s why we launched new webpages and Printable Guides to help you make the case for celiac disease testing. You can read all about these new resources in the article “Celiac in Families” below.
Before talking to your family, arm yourself with enough information to help them understand the importance of getting tested.
Having a Family Member with Celiac Increases Your Risk
1 in 22 first-degree relatives (siblings, parents, child) and 1 in 39 second-degree family members (aunt, uncle, niece, nephew, cousin, grandparent, grandchild, and half sibling) of those with celiac disease are at risk for developing the condition. If you or your child has celiac disease, there’s a strong chance that someone else in your family is also living with celiac.
Symptoms of Celiac Disease Vary
Some people will have classic symptoms of celiac, like diarrhea, malnutrition, and weight loss, while others will have less obvious symptoms, like thyroid conditions and anemia. Some may have no symptoms at all. With more than 300 symptoms of celiac disease, the surest way to know if someone is affected is to get tested.
Left Untreated, Celiac Disease Can Cause Serious Health Problems
Untreated celiac disease can lead to major health issues, like osteoporosis, infertility, thyroid disease and some cancers, such as lymphoma. Since some people may have no symptoms of celiac, it is imperative that your family members get tested right away to avoid these long-term health effects.
Remember, your diagnosis makes celiac disease hit close to home. But, it could be closer than your relatives even think.
In GREAT Health,
Can the Gluten-Free Diet Help Your Celiac Child Lose Weight?
By Miranda Jade Turbin
The gluten-free diet has been purported by celebrities, magazines, and books to perform a number of health miracles, including weight loss. The gluten-free diet, however, doesn’t necessarily mean weight loss for children with gluten-related disorders.
As a matter of fact, not only does the gluten-free diet not promise weight loss, it can actually lead to weight gain. In children with celiac disease who have been losing weight due to malabsorption of nutrients, the gluten-free diet can help get weight to a healthy level.
The gluten-free diet can also lead to unhealthy weight gain due to substituting diet staples such as pasta and baked goods with gluten-free alternatives which still contain sugar, carbohydrates, and calories. To avoid this, focus on feeding your child nutrient-rich whole foods as opposed to processed foods. Why do you have to substitute gluten-free bread rolls for regular ones when you can just skip the bread altogether and give your child a side salad?
If your child has celiac disease or non-celiac gluten sensitivity, he or she will require a gluten-free diet for life. By making the right food choices, you can help your child achieve and maintain a healthy body weight.
Here’s a delicious and healthy gluten-free recipe to make for your child.
RECIPE: Korean Gluten-Free Pancakes
- Miranda Jade Turbin
About Miranda Jade Turbin
Miranda Jade Turbin became extremely interested and involved in the subjects of celiac disease, non-celiac gluten sensitivity and gluten issues a number of years ago, after being diagnosed as celiac after many years of unresolved troubles. Since then, she has engaged in diligent research and writing about these topics, developing gluten-free recipes and reviewing companies for celiac consumer safety at the award-winning website: GlutenFreeHelp.info.
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My Favorite Gluten-Free Indulgences
By Chef Oonagh Williams
August is my birthday month, so I get to indulge. These are my favorite gluten-free recipes to make when I throw calorie counts to the wind!
When deciding on what to make for my birthday cake, I was in an “I-need-chocolate” frame of mind and recalled a chocolate dessert from a Memorial Day party. Many people called it Death by Chocolate. Others call it Chocolate Death, Chocolate Dump, Chocolate Bowl or Punch Bowl Chocolate. I’m going with Chocolate Overkill. This recipe makes a large quantity, so make sure to invite your friends!
HAZELNUT FUDGE BROWNIES
These brownies are delicious on their own or when incorporated into my Chocolate Overkill dessert. They are rich and moist, and only require a few simple ingredients.
SALMON AND SHRIMP IN SWEET & SPICY
I first saw this recipe in Southern Living magazine. The original was a bit too hot, so I cut back the heat. I’ve served this sauce with various grilled meats as well as with gluten-free crusted tilapia filets served in soft corn tortillas with lettuce, tomato and avocado. All say yum with me!
About Chef Oonagh Williams
British-born award-winning chef Oonagh Williams has a culinary arts degree and was trained in London and Switzerland. Based in New Hampshire, Chef Oonagh began adapting meals to gluten-free versions after her son was diagnosed with gluten and lactose intolerance two years ago. To learn more, visit Chef Oonagh’s website at RoyalTemptations.com or ‘Like’ her at Gluten Free Cooking with Oonagh on Facebook.
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By Dr. Vikki Petersen, DC, CCN
[The following is a case study from Dr. Petersen’s practice at HealthNOW Medical Center. The patient’s name has been withheld to protect privacy.]
H, as we’ll call her, is a 30-year-old married woman with severe migraine headaches. While migraines are her biggest complaint, she also suffers from stomach pain, bloating and diarrhea that have been diagnosed as IBS in the past. She is also “addicted to caffeine” and cannot think straight without it. Her energy level is very low; falling asleep at her desk is not unusual, despite massive amounts of caffeine.
She has been on the medication Topomax for her migraines, but would like to get off it in order to get pregnant. She had been trying to get pregnant unsuccessfully and then her neurologist told her to stop trying since she was on the medication and it could cause birth defects.
She was diagnosed with celiac disease, confirmed by biopsy, 18 months prior to coming to see us and “thought” she was on a gluten-free diet. Her symptoms continued, however, even after her attempts to change to a gluten-free lifestyle.
Upon close inspection of patient’s diet, it became clear that she was being exposed to gluten on a regular basis. She was not knowingly “cheating,” but she had not received sufficient education on how to identify overlooked sources of gluten and how to order in a restaurant, to name a few issues she was running into.
At HealthNOW Medical Center, we often find that in addition to gluten exposure, there are secondary conditions often found in people with celiac disease that can prevent healing and cause persistent symptoms. These conditions include the presence of infections in the intestine, imbalanced gut bacteria, nutritional deficiencies, hormonal imbalance, toxicity and other negative food reactions – many of which are associated with the damage that occurs to the intestine and immune system when celiac disease goes untreated.
In this case, the patient was found to have a bacterial infection called H. pylori that is found in the stomach and can create a great deal of stress on the immune system. We believe this infection took hold while her immune system was suppressed from the damage created by gluten.
Further, the patient was discovered to have several food reactions in addition to gluten, including dairy products, millet and potato. These foods have protein structures similar to that of gluten, so some patients may react to the foods when their immune system is compromised from gluten exposure. After eliminating these foods for 3 months, we were able to reintroduce millet and potato into her diet without any reactions. Dairy products, however, continued to cause a reaction.
The patient was also hormonally imbalanced and was put on natural supplements to assist in this area.
The biggest challenge was weaning her off caffeine. At one point, her boss begged her to resume caffeine because her brain was so foggy.
Thankfully, she persevered. With nutritional help and the restored ability to absorb her nutrition, (thanks to fully eliminating gluten from her diet), she came out the other side with much improved energy and no more caffeine.
Finally, we gave the patient a 2-week course of antibiotics to treat H. pylori. The symptoms of this infection range from diarrhea to having a metallic taste in the mouth, so it’s never fun. Fortunately, a retest indicated that the infection has been eradicated. During this time period, we successfully weaned down her Topomax regimen, and her migraines were well-controlled. About 6 months after starting care, she was completely off the drug and was stable.
Currently, she is 3 months pregnant and thrilled. She attributes the pregnancy (they weren’t even trying) to her increased level of health and ability to absorb her nutrients. I personally think it’s a combination of multiple factors including removing gluten, other foods she was reacting to and eradicating a serious bacterial infection. Further, she balanced her hormones and got on a healthy, nutritious and balanced diet.
She currently has no symptoms bothering her other than an aversion to some smells, completely normal in early pregnancy.
The take-away from this case study is:
Once these steps have been taken, you should be on the road to optimal health.
About Dr. Vikki Petersen
Vikki Petersen, DC, CCN, is founder of the HealthNOW Medical Center in Sunnyvale, CA, and co-author of The Gluten Effect. Dr. Petersen has been published in national and international medical journals, newspapers and magazines for her cutting edge work in the field of gluten sensitivity. Her commitment to increase the awareness of gluten sensitivity nationally is well recognized. She has been a featured speaker at the annual Gluten Sensitivity & Celiac Forum held in northern California. HealthNOW Medical Center is a destination clinic, treating patients from all over the country.
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By NFCA Staff
Having a relative with celiac disease increases your risk of developing celiac, but many parents, siblings and family members are resistant to getting tested.
Earlier this year, NFCA collaborated with the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) in Boston to address that challenge through guiding the work of Claudia Dolphin, a graduate student from Emerson College’s Master’s in Health Communication program. Claudia’s research project “Screening for Health: Attitudes and Beliefs of Non-Participants in Disease Testing” examined the thoughts and attitudes of family members who had not been tested for celiac disease despite having a relative with the disease. The study revealed that many family members were unaware that undiagnosed celiac disease often presents without any outward symptoms, and 64% of those surveyed said they would get tested for celiac disease if a family member asked them to.
In response to those results, Claudia developed the tools for diagnosed individuals to talk with their family members about celiac disease testing. Today, NFCA is excited to announce the launch of this content in the form of new webpages and a Printable Guide. In addition, there is a new webpage and Guide to help your family members talk to their doctors about getting tested for celiac.
The NFCA and BIDMC teams hope that these new resources will help you begin this important conversation with your relatives. It could be a life-saving chat!
View the new webpages:
Note: NFCA thanks Claudia Dolphin, MA for her essential role in this study and resulting resources. The assistance of Kristin Voorhees, MA, and Daniel Leffler, MD, MS, is also gratefully acknowledged.
The deadline to enter NFCA’s Gluten-Free Pantry Raid is less than 1 month away, and we’re itching to find out who will win our Grand Prize.
We already told you that NFCA Founder & President Alice Bast would accompany you on a gluten-free shopping spree. This month, we’ll reveal where you’ll be shopping in a special eblast.
With help from Alice and our dietitian expert, you’ll stock up on gluten-free pantry staples, plus some helpful kitchen gadgets to make home cooking more fun and enjoyable. Then you’ll head home and get tips on the best way to organize and store your gluten-free items.
Sound like a plan? Well, you can’t win if you don’t enter, so throw your name into the drawing by donating $20 to NFCA between now and August 31, 2012. We’ll announce the winner on Thursday, September 13 – that’s Celiac Awareness Day!
A special thanks to our Gluten-Free Pantry Raid sponsors: Crunchmaster and Cabot Creamery
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As kids prepare to head back to school, parents once again face the question: What the heck will I make for lunch? This year, Rudi’s Gluten-Free Bakery has supplied NFCA with 4 weeks of meal plans to make gluten-free school lunches a snap.
Starting on Monday, August 6th, NFCA will post one Gluten-Free Lunch meal plan each Monday for the next 4 weeks. Each meal plan will feature ideas for easy and kid-friendly gluten-free school lunches. To make your planning even easier, we posted a shopping list for the full month so you can hit the grocery store now.
While you’re checking out the meal plans, you can sign up for our weekly Gluten-Free Giveaway featuring Rudi’s Gluten-Free Bakery products, including their new tortillas! We’ll announce one winner each Friday.
Whole Grains: Are You Getting Enough?
By Shelley Case, RD
[The National Foundation for Celiac Awareness and Allergic Living magazine are happy to provide this second quarterly column from renowned dietitian Shelley Case, RD. Read her latest installment below, then check out her first column "Controlling Your Weight on a Gluten-Free Diet."]
When you follow a gluten-free diet, it’s important to realize that all cereals are not the enemy. In fact, gluten-free whole grains are superb for your diet and essential to good health. Studies show that those who regularly eat whole grains have lower cholesterol levels, reduced risk of heart disease, stroke, type 2 diabetes, cancer and obesity.
“You Did It!” is a section of NFCA’s newsletter where we share stories and advice from NFCA volunteers. We hope these articles will inspire you to take action and say “I did it!” today. For more volunteer stories, see NFCA's Awareness All-Stars blog.
NFCA had the pleasure of working with two incredible volunteers at Celiac Awareness Night at the Phillies on July 20th. Cecilia Bonaduce and Rebecca Urbano brought smiles and energy to the table. We look forward to having both of them on the volunteer force for Appetite for Awareness 2012!
Speaking of which…
If you are interested in volunteering at Appetite for Awareness, sign up now! We are looking for volunteers to assist with set up, clean up and everything in between. If you can’t make it to Appetite for Awareness on Sunday, September 23rd, you can still help out with our pre-event needs.
Appetite for Awareness 2012: Volunteer Form
Free Webinar: Thursday, August 16, 2012 at 2 p.m. ET/11 a.m. PT
Cross-Contamination in Restaurants: What You Need to Know
Last month, NFCA asked you to share your gluten-free dining concerns. Now, your questions and comments are guiding the development of a special webinar on cross-contamination in restaurants. This educational session will feature a panel of third party industry experts, including both foodservice and healthcare professionals. The session will be presented online and will focus on three core goals: education, empowerment and advocacy - the cornerstones of NFCA’s mission. The expert panelists include Pam Cureton, RD, LDN, Clinical and Research Dietitian, Center for Celiac Research, University of Maryland, Amy Jones, MS, RD, LD, Chief Clinical Dietitian and Celiac Support Group Facilitator, Mary Rutan Hospital, and Ken Schelper, Vice President of Davanni’s, Board of Directors for Minnesota Restaurant Association
Supported by a generous anonymous donor with a passionate interest in health and wellness.
Free Webinar: Thursday, August 23, 2012 at 8:30 p.m. ET/5:30 p.m. PT
Back to School: Preparing to Educate School Administrators on the Importance of Gluten-Free
In the past year, NFCA’s inboxes have been flooded with questions on how to address children’s medical needs at school while remaining positive. NFCA’s annual Back-to-School webinar will return with a focus on providing parents of gluten-free children with the knowledge and material needed to address tough gluten-free issues with their children’s school administration. Presented by Gabriela Pacheco, RD, LD, SNS, School Nutrition Consultant.
Sponsored by Mary’s Gone Crackers, this webinar is free of charge
Appetite for Awareness: Sunday, September 23, 2012, 1-5 p.m. ET, Philadelphia
The National Foundation for Celiac Awareness invites you to attend our signature gluten-free event. This year, we’re hosting it at the Historic Strawbridge Building at 8th and Market Streets in Philadelphia.
One ticket price gets you in the door, with unlimited gluten-free food and drink, an abundance of free samples and a reusable shopping bag.
Visit the event page for more information.
T-Shirt Design Contest (NEW!)
Can't attend Appetite for Awareness 2012? Find out how you win a bag of gluten-free goodies from the event, no matter where you’re located. Details here.
*For more gluten-free and celiac awareness events, visit our Upcoming Events page.
GREAT Training Saves Summer for 2 Gluten-Free Campers
NFCA created GREAT (Gluten-Free Resource Education and Awareness Training) with one goal in mind: empowering foodservice and healthcare professionals to better serve individuals with gluten-related disorders. As the Director of Gluten-Free Industry Initiatives, Beckee Moreland oversees the GREAT Foodservice programs and works directly with those interested in taking courses in smart gluten-free cooking. While Beckee most often works with foodservice professionals, she recently encountered a woman who showed her first hand just how GREAT an impact the training can make.
A woman named Jenny from Colorado reached out to Beckee and told her about her twin teenage daughters who had recently been diagnosed with celiac disease. For years, her daughters attended Camp Ogichi Daa Kwe in Minnesota every summer. This year, between the recent diagnoses and lack of experience with the gluten-free diet, Jenny was afraid to send her girls to the camp. Disappointed they would miss out on their summer tradition, she found a solution to the problem: NFCA’s training program called GREAT Schools, Colleges and Camps. Read the uncanny story from Beckee on how the two connected and how Camp Ogichi Daa Kwe pulled through for the twins on NFCA’s staff blog, Celiac Central: Bits and Bites.
With summer camps in full swing and back to school season on the horizon, NFCA encourages parents to talk to their children’s schools, camps, and colleges about going GREAT. Through the training, these foodservice professionals will learn how to properly prepare gluten-free food and reduce the risk of cross-contamination. A number of schools, colleges, and camps have already taken the training and are ready to serve gluten-free students and campers. For a list of these GREAT locations, visit www.beyondceliac.org/schools.
By Alicia Carango, NFCA Communications Assistant
Mamma Chia Vitality Beverages
If you’re looking for a natural energy drink, Mamma Chia Vitality Beverages may be just the thing you’ve been searching for. Packed with nutrient-rich chia seeds, these drinks deliver natural energy in the form of organic fruit juice. Mamma Chia comes in nine different flavors that stray from your typical juice drinks, including Guava Mamma, Coconut Mango, Pomegranate Mint, and Raspberry Passion. I tried the Guava Mamma and it has a refreshing flavor to it and it’s literally full of chia seeds. I wasn’t too sure if I would like the texture because of the seeds, but Mamma Chia has the right idea- this is definitely one unique drink!
Learn more about Mamma Chia drinks.
Edwards & Sons Exotic Rice Toast
Made with purple rice and black sesame, these mini-toast crackers are gluten-free, vegan, low sodium and contain 0 grams of trans fat. They’re sturdy and flat, so you can pack on your favorite gluten-free toppings but, somehow, they are still light enough to eat alone as a snack. Whichever option you choose, your taste buds are in for a treat.
Learn more about Exotic Rice Toast.
Cava Mezze Dips and Toppings
Cava Mezze offers a wide variety of toppings and dips including traditional hummus, eggplant and roasted red pepper dip, roasted garlic hummus , and tzatziki. These are great for dipping raw veggies or scooping with your favorite gluten-free cracker (why not try it with the Exotic Rice Toast?). A huge hit with NFCA staff, the Cava Mezze products are definitely worth a try.
Learn more about Cava Mezza products.
Earth Family Dip Mix & Seasoning
Add some kick to your casseroles, salad dressings, fondues, meats, veggies and more with Earth Family Dip Mix & Seasoning. These seasonings are just my style: Open, sprinkle on chicken and cook. No teaspoons or fancy spice jars needed. If you’re lacking inspiration for how to use the seasonings, check out the Earth Family website. It gives recipe ideas for entrees, sides, dips and (coming soon) desserts. .
Learn more about Earth Family Dip Mix & Seasoning.
*Get Hot Products updates from NFCA every week!*
Visit our Gluten-Free Hot Products blog >>
Gluten-Free Athlete Wins Gold at 2012 Olympics
With overwhelming support from the gluten-free community, US Olympic swimmer Dana Vollmer took home gold in the 100m butterfly and set a world record in the process. After discovering she has non-celiac gluten sensitivity, Vollmer is feeling stronger than ever and powering her way through the London games.
Read more on Athletes for Awareness.
A Low Biopsy Rate Could Contribute to Under-Diagnosis of Celiac Disease in the US
Of the estimated 3 million Americans with celiac disease, only about 5% are diagnosed. From studying data on upper gastrointestinal endoscopies conducted from 2004-2009, researchers now believe the reason for this low diagnosis rate is from a lack of biopsies being done in the small intestine. Only 43 percent of those undergoing an endoscopy had biopsy samples taken.
Read more on Huffington Post.
Celiac Disease Group Looking for Teens to Participate in a College Survey
Researchers of the Celiac Disease Group at Lucille Packard Children’s Hospital at Stanford are looking for teens with and without celiac disease to take a survey about the college experience. The goal is to create resources for teens with celiac disease and non-celiac gluten sensitivity to make the transition to college easier. Study participants will automatically be entered into a drawing to receive a $500 cash prize, iPad or other prize.
Take the survey via SurveyMonkey or the Lucille Packard Facebook page.
Take Me Out to the (Gluten-Free) Ballgame
In a night full of gluten-free hot dogs, pizza, and beer, NFCA worked to spread awareness at Celiac Awareness Night at Citizens Bank Park, home of the Philadelphia Phillies. NFCA staff and volunteers spoke with game attendees about the signs and symptoms of celiac disease and where to get the resources they need to manage celiac disease, all while offering free raffle prizes. (A special thanks to the Phillies for donating a fantastic gift bag for the raffle!)
Read more from Alicia and Cheryl on the NFCA staff blog, Celiac Central: Bits and Bites.
Survey Finds Consumers Perceive Gluten-Free Foods to be a Healthier Option
Results from a survey conducted by Vitacost revealed that only 13 percent of survey participants are purchasing gluten-free products because of celiac disease. 31 percent of respondents say they choose gluten-free alternatives because they perceive them to be healthier options. While many are opting to go gluten-free as a lifestyle choice, NFCA emphasizes that the gluten-free diet is a lifelong medical necessity for those with gluten-related disorders.
Read more on MarketWatch.com.
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