04/07/2016 | BeyondCeliac.org
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Note from Alice

We Need to be Our Best Health Advocates

Alice Bast, Beyond Celiac CEOWhat started out as a second honeymoon with my husband, Will, ended up as the vacation from hell. Both Will and I came down with flu-like symptoms and spent the better part of our trip sick in bed. When our flight home landed on Saturday, I quickly shuffled off to a speaking engagement in New York, despite having a deep cough. By Tuesday, I felt horrible, so I called my general practitioner (GP). I was told that “everybody has that virus” and that the earliest appointment was on Friday. I called my GP a second time on Wednesday and assumed that my worsening symptoms, which now included a fever and difficulty breathing, warranted a same-day appointment. Again, I was told the earliest appointment was on Friday.

Rather than listening to my body and resting, I spent the week working non-stop and trying to catch up on everything I missed during my “vacation.” With a bit of prodding from my concerned coworkers, I had to take action. I called a friend of mine who is a physician and told him how I was feeling. Listening to my voice and symptoms, he thought it sounded like I had pneumonia and ordered a chest x-ray. When I received the x-ray results, the radiologist recommended that I have a CT scan to follow-up. The result: I had a case of viral and bacterial pneumonia. Because I have celiac disease, I am at a higher risk for pneumonia.

My GP finally saw me on Friday afternoon. She said that they were understaffed that week. Although this explained why I couldn’t get an appointment immediately, it couldn’t explain why my symptoms had been so quickly shrugged off as something everybody has. Within a few minutes of seeing me, she confirmed what I was forced to learn myself through two expensive and invasive tests: I had a severe case of pneumonia and needed to rest for at least five days.

In a perfect circumstance, the medical technology that helped diagnose my pneumonia would have only been necessary for confirmation after an initial diagnosis by my GP. I have to wonder why the relationship between GPs and their patients is almost non-existent to the degree that, even though I had a serious case of pneumonia, I had to rely on the courtesy of a physician friend before getting an appointment with my own GP.

How do we advocate for good healthcare? And whatever happened to the doctor-patient relationship? How can a network of family, friends and coworkers help us all have access to better care? We all need to put our health first – something that sounds so simple, yet can be more challenging when you put it into the context of real life. Here is what I learned through my recent experience:

  1. Listen to your body. If you are sick, don’t push yourself.
  2. Know your health risks. For example, people with celiac disease have a higher risk for pneumonia. It is essential to learn everything you can about any conditions you may suffer from, as well as what other conditions you may be at high risk for.
  3. Be your own health advocate. When your doctor refuses to see you for an immediate appointment or says that nothing is wrong, advocate for that appointment and for an explanation of the pain you are experiencing. Demand a doctor see you when you experience worsening conditions.
  4. Listen to the people who care about you. It took the urging of my coworkers and husband, who expressed concern for my health for several days, before I set a doctor’s appointment.

To living better, longer,
Alice Bast       
Beyond Celiac CEO


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Cooking with Oonagh

Lemon or Orange Ricotta PieThis is a very straightforward recipe with more ricotta and less flour than other recipes.  I used gluten-free flour and zest of two oranges, but it would be even better with zest of three oranges. The cake is good on its own, but I also served it with an orange maple butter sauce as well as sliced cara cara oranges in simple syrup with orange liqueur.  

Ricotta Pancakes
When I attended the New England Trade Food Show in Boston in March, BelGioioso was there with cheese samples and recipes, including one for ricotta pancakes. My local market doesn't carry BelGioioso ricotta, so I used Galbani ricotta in this recipe. The BelGioioso ricotta pancake recipe added ricotta to a pancake batter, either from scratch or from a mix, but used less ricotta than my recipe. These are very plain pancakes, so I added orange zest, 2 Tbsp. mini semisweet chocolate chips, fresh blueberries and lemon zest.


About Chef Oonagh Williams

Chef Oonagh WilliamsChef Oonagh Williams has a culinary arts degree, celiac disease and other food allergies. She spends her time speaking and writing nationally on food for gluten-free and other specialty diets. Recently, she advised three celebrity chefs in Boston. 

Chef Oonagh has various gluten-free (and other food allergies) cooking demonstrations and talks at a Health and Wellness Fair on May 14.  She will also host gluten-free cooking classes Friday nights in April at Nashua Community College. 

Buy her Delicious Gluten Free Cooking e-book, with over 200 pages, full color photos for only $20. Like her at Gluten Free Cooking with Oonagh on Facebook where she posts recipes, links to her New Hampshire ABC appearances and products she's found and tasted. Connect with her on Skype for help in following a restricted diet. Locally, she teaches healthier food cooking classes for everyone, as most real food is naturally gluten-free and free of many other allergens.

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Crunchmaster: Happy, Healthy and Gluten-Free

The Difference Between Celiac Disease and Gluten Sensitivity

Celiac Disease: Normal villi vs Damaged villiWith similar symptoms and the same treatment, it’s no wonder that people are confused about the difference between celiac disease and non-celiac gluten sensitivity (‘gluten sensitivity’). One of the biggest differences? Intestinal damage. Plus, celiac disease is a genetic autoimmune disease and gluten sensitivity is exactly what it sounds like - a sensitivity. 

When people with celiac disease eat gluten, the body launches an immune response which damages the small intestine and other systems in the body. This can produce a wide variety of symptoms. People with gluten sensitivity can experience the same symptoms, but they don’t have the same intestinal damage that’s seen in people with celiac disease. Research is also suggesting that FODMAPs, a group of poorly digested carbohydrates, might be the cause of gluten sensitivity, not gluten alone.

Download a free fact sheet to learn more about the differences between celiac disease and gluten sensitivity.

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Celiac Disease’s Family Ties: Getting Your Clan Screened

By Lisa Fitterman

Two women talking on the grassAimee Corso was frustrated. As senior vice-president of the health-care group at a multinational communications firm, her job is turning what on paper may look like dry scientific data into something compelling. It is her passion and practically her mantra: make people want to learn more, no matter if it is biotech, a pharmaceutical advance or a new and better way to diagnose a disease.

So then why, oh why couldn’t she or her husband, Tony, get their own families to listen to them after their daughter was diagnosed in September 2014 with celiac disease? Ten years old at the time, Sofia had always been energetic — a super-achiever at anything she tried, be it school, sports or dance. Then, as if overnight, she got tired — and not just “tired but she’ll be all right after a few good nights of sleep,” says her mother. This tiredness was extreme — and extremely worrying.

Continue reading.

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Need new reasons to kiss the cook?

Gluten-Free and Allergen-Free eCookbook Series

Gluten-free, allergen-free breakfast eCookbook previewHaving celiac disease means having to take food seriously, but it doesn’t mean giving up the pleasures of cooking and eating delicious meals. And while cooking gluten-free certainly has its challenges, this month’s mini eCookbook series proves it can also be creative, varied and fun. These recipes aren’t just for the culinary adventurers among us; even if you have a tried-and-true rotation of meals, you’re likely to find a bit of inspiration to spice up your favorite dishes here.

The recipes in this month’s e-cookbooks are completely gluten-free and free of the top 8 allergens. With the help of these handy eCookbooks, you can wake up to a stack of caramelized banana pancakes, impress guests with a lemony chicken and sweet potato roulade, go meatless at the barbeque with a black bean and cilantro burger and satisfy your mid-day munchies with a simple garlic hummus. Celiac disease can’t stop us from making great meals and taking food seriously!

Get the eCookbooks.

Thanks to Enjoy Life for making this cookbook series possible. 


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Get Involved Just by Participating in Surveys about Your Experience!

Tell Us How We’re Doing!

2015 was a huge year for Beyond Celiac. We changed our name from the National Foundation for Celiac Awareness. We hosted our first ever Research Summit and launched Seriously, Celiac Disease, the first campaign dedicated to helping relatives of people with celiac disease get tested. Our website received a major face lift.

We’re excited about all of these changes and steps in a new direction. As we continue to grow and evolve, we want to make sure that your needs are being met. Above all else, we want to make sure that you can live your life to the fullest, despite having celiac disease.

Please take 10 minutes to tell us how we are doing through this survey. We’d love to hear from you!

Gluten-Free in College Survey: Still Accepting Responses

Online Survey

We want to know more about your or your child’s gluten-free college experience! Please take a brief survey to help us better understand what needs college students have and how we can help.


Take the college survey here.

Did you know that Beyond Celiac offers a gluten-free training program for schools? Learn more about the GREAT Schools, Colleges and Camps program and how it can help students with celiac disease eat safely on campus. 

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Three Bakers Gluten-Free Bread: Click to save a dollar.

Resource Spotlight: Beyond Celiac Blogger Ambassadors

The Beyond Celiac Blogger Ambassadors are one of the best resources for living with celiac disease on the web. Each blogger brings his or her own unique strengths to the table: some focus on delicious gluten-free recipes, some share products reviews, and others stay on top of the latest in celiac disease research and offer lifestyle tips. Beyond Celiac is proud to partner with these bloggers so we can work together to help you live your life to the fullest!

Check out our Blogger Ambassadors:

Erica Dermer

Erica Dermer, Celiac and the Beast



Cindy Gordon

Cindy Gordon, Vegetarian Mamma



Annette Pugliese
Annette Pugliese, Best Life Gluten-Free



Taylor Miller
Taylor Miller, Gluten Away



Jackie Ourman

Jackie Ourman, Celiac and Allergy-Friendly Epicurean (C.A.F.E.)



Michael Savett
Michael Savett, Gluten Free Philly



Anna Sonnenberg

Anna Sonnenberg, Gluten-Free Jet Set


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Gluten-Free Food Labeling: What’s the Deal?

By Alicia Carango, Beyond Celiac Web & Social Media Manager

Woman reading food labelDuring a recent business trip, Beckee Moreland, Beyond Celiac Director of GREAT Kitchens, was shocked to find “barley” listed with “cheese culture” on the back of her salad dressing. The dressing was not labeled as gluten-free, but it reinforced just how difficult it can be to track down the many hiding places of gluten. Beckee luckily had access directly to the ingredient panel, and thankfully, this brand pointed out that barley had been added, which is not required on food labels.

I posted a picture of the salad dressing ingredients label on the Beyond Celiac Facebook page and our community had a lot to say about the label. Some were baffled by cheese culture being a source of barley. Others questioned why barley and rye are not included in the top 8 allergens. Still others said it is instances like this that makes them eat only whole foods or packaged foods with very few ingredients.

No matter if you rely on whole foods or packaged foods for the majority of your meals, if you have celiac disease, you are going to have to read food labels at one time or another. And let’s face it, food labels are downright confusing. Yet, not paying attention or not understanding a food label can lead to days or weeks of feeling sick and picking out food can become very stressful very fast.

Here are a few tips to help get you through the grocery store experience:

Start with foods specifically labeled as gluten-free if you’re a newbie.
Packages labeled as gluten-free make the label reading process easier. The FDA passed a gluten-free labeling rule, stating that any FDA-regulated food labeled “gluten-free,” “free from gluten,” “without gluten” or “no gluten” must contain less than 20 parts per million (ppm). Learn more about what 20 ppm means here. It is extremely important to double check the ingredients label for sources of gluten even if a product is labeled as gluten-free.  For an added level of comfort, look for products certified through the Beyond Celiac endorsed Gluten-Free Certification Program.

Brush up on the rules for allergen labeling.
Only the top 8 allergens need to be called out on a label: wheat, soy, milk, eggs, shellfish, fish, tree nuts and peanuts. That means that barley and rye don’t need to be spelled out on the label. Always remember that wheat-free does not mean gluten-free too.

Also know that many warnings and advisory statements on products are voluntary. The manufacturer is not required to share certain information. A good example of this is the “allergen advisory statements.” These are the tricky ones that say something to the effect of “this product has been manufactured in a facility that processes wheat.” If this label is not on a package, it does not mean that it is produced in a dedicated gluten-free facility. You can learn more about these advisory statements on page 27 of the Beyond Celiac Getting Started Guide. Understanding risky ingredients can help you to identify hidden gluten when the source is barley or rye, which do not have to be called out on the label.

When in doubt, know where to go for help.
If you find something confusing on a food label, check out the manufacturer’s website to see if you can find more information. Or, you can check their site for a customer service number and call them directly. If you see a questionable ingredient on a labeled gluten-free food, visit the Beyond Celiac Facebook page and send us a message or comment with your question. Our Answers from a Dietitian blog also has information on confusing ingredients. Gluten-Free Watchdog, a site run by Tricia Thompson, MS, RD, can be helpful as well. She regularly posts about foods that are mislabeled as gluten-free and provides top notch information to the community.

Download the step-by-step reading labels guide.
This guide will help teach you the basics of gluten-free food labeling. Even if you’re a gluten-free diet pro, check out the guide anyway. You never know what you might learn! Grab it here

Ultimately, when in doubt, leave it out.
Your health is the most important thing, so it’s better to forgo eating a questionable product than to risk gluten exposure.

Do you have general questions about gluten-free food labeling? We’re happy to answer your questions! Comment or message us on Facebook with your questions. You can also visit our FDA Gluten-Free Labeling Law hub at www.BeyondCeliac.org/FDA.

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Meet the Beyond Celiac Patient and Family Advisory Council

Beyond Celiac relies on the input from everyday people living with celiac disease to make sure we’re doing everything we can to help the community "live better, longer" with celiac disease. Each month, we’ll be featuring two of our Patient and Family Advisory Council (PFAC) members so you can learn more about the people representing your voice.

Meet Danielle Kay Riendeau 

What is your relationship to celiac disease?
I was diagnosed with celiac disease in April 2012.

Can you tell us a little bit about your path to diagnosis?
It took about a year and a half from the time I started experiencing symptoms to get a diagnosis, with about six months of that time being spent at countless doctors' appointments with different specialists, tests and medicine trials. The main struggle during this time was the constant optimism/disappointment cycle thinking that the latest test would have the answer, only to receive no helpful information while my symptoms steadily worsened. The only success during that time was the final diagnosis, and the relief that came with it. 

Can you talk about your life after diagnosis and your experiences living with celiac disease?
Life after diagnosis was mostly a success because I was so happy that I could finally eat without getting sick, and knew the source of my symptoms. The main struggle for me has been going out to eat or going to family gatherings, and trying to explain my food restrictions without feeling like an inconvenience or "high maintenance." There has also been an increase in anxiety over eating anywhere outside my home since I can't see how dishes are being prepared.

In your opinion, what are the biggest flaws of the gluten-free diet?
The availability of gluten-free options both in restaurants and stores has gotten dramatically better even in the last few years since my diagnosis. The flaws that still remain are the higher prices for gluten-free products, and that so many people think of it as a "fad diet." While that has helped increase the quantity and quality of gluten-free products, it also seems to make people take celiac disease less seriously.

What are your hopes for the future and what changes do you wish to see in the celiac disease field?
The ultimate wish is that they find a cure for celiac disease. In the shorter term, I would love to see more education about celiac disease as a serious genetic autoimmune disease, and not just a diet or intolerance. My hope is that more education will also help people get quicker diagnoses, and minimize the negative and permanent effects of long-term complications.

Meet Michael Paroda

What is your relationship to celiac disease?
My four-year-old son, Miles, was diagnosed with celiac disease when he was one year old. I subsequently discovered that my aunt and a second-cousin have celiac disease, so I know I am at risk, but my tests for celiac disease were negative.

Can you tell us a little bit about your path to diagnosis?
Miles struggled with symptoms for a few months prior to his diagnosis. His pediatrician misdiagnosed him, including suggesting he had clostridium difficile (c-diff) at one point. It wasn't until we visited a children's hospital that a pediatric gastroenterologist diagnosed celiac disease through blood tests as well as an endoscopy.  We experienced many struggles along the way, but the positive is that he was diagnosed rather quickly compared to others.

Can you talk about your life after diagnosis and your experiences living with celiac disease?
After getting over the initial shock, we've found it pretty easy to find gluten-free alternatives for many items like bread and pasta. The struggle is staying safe outside our home; eating at school, restaurants, and family members’ houses all pose problems with cross-contact. 

In your opinion, what are the biggest flaws of the gluten-free diet?
We have to trust that what we eat is actually gluten-free. That means we have to trust that food manufacturers, restaurants, etc. are not contaminating our food with gluten. It'd be much easier if we could just take a pill!

What are your hopes for the future and what changes do you wish to see in the celiac disease field?
I hope for a cure - and I think this is possible with more focus on celiac disease by medical professionals and researchers. In the meantime, I want to see more standardized testing in order to diagnose at-risk individuals as well as the millions of undiagnosed. 

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Enjoy Baking to the Fullest

Ask Sophia: Traveling Abroad When You’re Gluten-Free

By Sophia Kagan, 12-year-old Beyond Celiac Volunteer

Hola, bonjour, ciao, namaste! Welcome to my April blog on traveling outside of the United States  while staying safe and healthy. I will tell you how to research countries and restaurants, get foreign language dining cards and travel with gluten-free food.

The first step in traveling abroad is to learn how to say “gluten-free” in other languages! Senza glutine (Italian), sans gluten (French) and sin gluten (Spanish) get you very far!  My parents learn how to say these phrases and I do, as well.

My mom always says planning is the most important part of any trip for someone who is gluten-free. This is very true when you are leaving the US for a place you don’t know well. If you are visiting a hotel or resort, you should read my blog from March for working with them. But if you are traveling all around a country, this should be helpful!

Before you go on your trip abroad, you and your parents should get on the internet and find information about traveling to the country you are about to visit to research gluten-free living in that city or country. Travel websites can be very helpful for finding reviews about gluten-free places that other people who went there wrote! My parents find it helpful to directly email restaurants that other travelers have written about as having good gluten-free experiences and asking directly if they can accommodate our gluten-free needs. 

Another thing you can do to prepare for your trip is to ask your parents to print gluten-free dining cards in the native language. My parents print these out on paper and then photocopy them to a wallet size so we have a lot of them and my parents can have them in their wallets. You see, people may not understand English or any other language you may speak, but a dining card helps them understand that you have celiac disease.  You or your parents can give the waiter the card and he or she will know you have celiac disease and the waiter will tell or bring the card to the kitchen so they will understand how you can eat safely and also about cross-contact.

When you travel abroad, the flight is usually longer than domestic flights. You should bring your favorite snacks with you just in case you get hungry on the airplane. I would recommend gluten-free pretzels, chips, sandwiches, vegetables, cookies, and whatever you would think is best to bring on vacation. Ask your parents for help to buy the foods you want. I think that bringing food on a trip will help you be comfortable and relaxed, especially if you get hungry between meals. We pack our suitcases with lots of gluten-free food so we never have an emergency. Better safe than sorry!

I would personally like to acknowledge Italy and the AIC, which is the Association of Italian Celiacs. Similarly to the Beyond Celiac GREAT Kitchens program, the AIC certifies restaurants as gluten-free-friendly in Italy. The AIC helped me a lot when it came to going to restaurants that would fit my celiac disease needs when I visited Italy! Italy takes celiac disease very seriously.

I hope that my blog helped you! I will see you in May with my Hot Products and “Ask Sophia” blogs!

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Coming Attractions

When Your Body Fights Itself: Understanding Autoimmune Disease 
Thursday, April 28, 2016 at 2 p.m. EDT/11 a.m. PDT

The gluten-free diet fad has led people to falsely believe that celiac disease is a simple digestive condition or food preference. To combat this myth, Beyond Celiac is working to ensure that celiac disease is recognized and understood as the serious genetic autoimmune condition that it is. Learning more about autoimmune diseases, including risk factors, signs and symptoms and why their prevalence is on the rise, is one of the most popular topics in the Beyond Celiac community. Your most popular questions will be answered by our expert panelists:

  • Robert (Bob) Anderson, BMedSc, MB, ChB, PhD, FRACP, Chief Scientific Officer, ImmusanT
  • Moises Velasquez-Manoff, MA, Author of An Epidemic of Absence: A New Way of Understanding Allergies and
    Autoimmune Diseasesand Journalist appearing in The Christian Science Monitor, The New York Times Magazine, Chicago Tribune and Slate.
  • Stephen Roberts, member of the Beyond Celiac Patient and Family Advisory Council will also join the panel to represent the interests and needs of the larger patient community.

Register button

Greater Philly Gluten-Free Expo
Saturday, May 21, 2016, Oaks, PA

The first annual Greater Philly Gluten-Free Expo will take place at the Greater Philly Expo Center in Oaks, PA. It will include local and national exhibitors, educational presentations, door prizes and gluten-free samples. The Expo will be open to the public from 10:30 a.m. to 4:00 p.m.  

Speakers at the event include Gluten Free Philly website publisher Michael Savett, Wegmans nutritionist Marda Heuman, author Jennifer Fugo, and  Beyond Celiac CEO Alice Bast. Alice will speak at 11:00 am so be sure to get to the Expo early.

Learn more.

Third Annual Silly Acts for Celiacs
Saturday, June 4, 2016, Woodstown, NJ

Join Mikayla Morell at the 3rd Annual Silly Acts for Celiac fundraising event, which will take place on June 4 at 2 Lamplighter Drive, Woodstown, NJ. Come on out for a fun day to see talented local acts perform their silly acts to raise money for celiac disease awareness! Silly Acts for Celiac resembles a talent show in which local performers showcase their talents to raise money for an amazing cause.

Donate or come out to this event and get more people diagnosed with celiac disease. Admission is $7.00 by cash or check at the door. However, there will be additional items  being sold and other activities you may want to participate in.

Register here today.

2016 Canadian Celiac Association Conference
June 24-26, 2016, St. John's, Newfoundland and Labrador, Canada

Canada’s breathtaking east coast beckons! The Canadian Celiac Association’s 2016 national conference will be held June 24-26, 2016 at the Holiday Inn in St. John's, Newfoundland and Labrador, on Canada’s eastern tip.

The keynote speaker is Dr. Daniel Leffler, an associate professor of medicine at Harvard University, and a leading world researcher on celiac disease and non-celiac gluten sensitivity ('gluten sensitivity'). The conference also will welcome numerous other fascinating presenters, including Erin Smith (the Gluten-Free Globetrotter), speaking about her many years of gluten-free travel and offering advice and useful pointers. Other pertinent topics to be addressed at the conference include celiac disease and osteoporosis, the pediatric and family doctor perspectives on celiac disease, a dietetic presentation, and the lighter side with Patrick Ledwell, a celiac stand-up comedian who has appeared on Canada’s national public radio.

Learn more.

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