Note from Alice
Health is wealth
Cooking with Oonagh
Beef or Pork Rouladen
Corn and Cheese Bread
SPECIAL NEWS UPDATE
Donation Match Grant
Your donation will be
matched until Oct. 31!
Free Celiac Disease Screening
Oct. 22 in North Carolina
No Response to GFD
ineffective for many
New Celiac Disease Therapies
Beyond Celiac helps
create new solutions
Celiac Disease and Infertility
Alice speaks toCosmo
Hot Spots in Restaurants
Learn the sources of
In Memory of Bread
Teal Pumpkin Project
kids with food allergies
Keeping Halloween Fun
Tips from our bloggers
NEWS & UPDATES
Note from Alice: Fecal Transplants and Parasitic Infections: How Far Would You Go to Get Your Life Back?
Madeline’s* first memory happens in the bathroom. She’s 3 years old and curled up on the cold linoleum floor in the middle of the night. She’s crying because the pain in her stomach is so bad it’s keeping her awake. She alternates between bouts of uncontrollable diarrhea and brief moments of restless sleep on the floor with her mom holding her hand beside her.
Things didn’t get easier as she grew up; they got much worse. At 17, Madeline needed to stay close to a bathroom at all times. She had trouble staying out of the grip of depression while mood swings complicated her emotions and relationships. As her mental and physical health suffered, she tried to control the only thing she could: her weight. Madeline ultimately stopped eating altogether out of an intense fear of food making her run to the bathroom and her need to keep something constant in her life. She struggled against this fear of food into her adult years.
Finally, in 2007, Madeline got the answer to her ailments: celiac disease.
She wishes she knew that removing gluten from her diet would have made her college experience memorable for the rightreasons. Instead, Madeline missed out on experience after experience.
German Style Beef or Pork Rouladen
One of my students used my recipe for Italian Beef Braciole and turned it into the German recipe of Beef Rouladen. The new recipe was better than she had eaten in some German restaurants. If using beef, you will need 8 large slices of top or bottom round beef. I buy 1½-2 lb. (750-1000g) beef and have the meat department slice it thinly (about ½” thick) as if for scallopini. Choose a piece of beef that doesn’t have the silver strip of gristle running through it. Get the recipe.
Moldavian Corn and Feta Cheese Bread
The bread is about 1” deep when baked in 8×8” (20×20 cm) pan. This is a very mild tasting bread apart from the tang from the feta cheese. I would also try cooking a chopped onion until very soft to add flavor and moisture. You can also add herbs to the batter. The bread is nicest served warm and is quite tender, so it can be easily sliced and microwaved. You can cut into croutons and pan fry to top soup, chili, salad, etc. Or cut into 3” squares and halve the squares for sandwiches with smoked ham. Get the recipe.
About Chef Oonagh Williams
Chef Oonagh Williams has a culinary arts degree and has celiac disease. She spends her time writing and speaking nationally on food for gluten-free and other food allergy diets. She also offers cooking classes, dinner parties and one-on-one help. Locally, she teaches healthier food cooking classes for everyone, as most real food is naturally gluten-free and free of many other allergens. Her eCookbook, Delicious Gluten Free Cooking, has over 200 pages and full-color photos. ‘Like’ her at Gluten Free Cooking with Oonagh on Facebook, where she posts TV appearances, recipes, advice, consultations and conferences where you can meet her. Connect with her on Skype for advice on how to live a gluten-free and allergen-free life. Upcoming Gluten-Free Public Cooking Classes: Merrimack, NH on Wednesday, October 12 from 7-9 p.m. and Milford, NH on Thursday, October 13 from 7-9 p.m.
An anonymous donor has generously offered Beyond Celiac $20,000 to support our programs that help our community manage the gluten-free diet, increase the rate of diagnosis, raise awareness and drive research, but we need you to make it happen. This donor will match our community’s donations dollar-for-dollar – in some cases 2-to-1! – until October 31, 2016. This is your chance to double your donation and impact!
What We Use Your Dollars For
Raising awareness. Driving diagnosis. Helping our community manage. Spurring research towards a cure. Founded in 2003, Beyond Celiac (formerly known as the National Foundation for Celiac Awareness) is a national patient advocacy organization that relies on donations and grants to make our work possible. For specific details on what we do and the progress we’ve made, head to our Role and Impact page .
If everyone who receives this newsletter donated just $2, we would easily surpass this goal to raise $20,000 to support you and your family. Thank you for your support and consideration!
- Any gift made between now and October 31, 2016 will be matched dollar for dollar
- Any new donor (someone who has never made a gift to Beyond Celiac before) will be matched $2 for every $1 donated
Beyond Celiac is excited to announce that we have partnered with Thermo Fisher Scientific and Dr. Schar USA Inc. to award Wake Forest Baptist Medical Center (WFBMC) in Winston-Salem, North Carolina, a $20,000 grant to help support a one-day family screening event on Saturday, October 22, 2016 .
The special event will provide free blood tests for 300 biological relatives of patients diagnosed with celiac disease.
The event is open only to adults who:
- Are 18 years and older
- Have a blood relative who has been diagnosed with celiac disease by a physician
- Are on a regular, gluten-containing diet
Adults who have previously been tested for the celiac disease genes and know that they do not carry the HLA-DQ2 or HLA-DQ8 genes are not eligible to participate in this event. (While not everyone with these genes will go on to develop celiac disease, only a person with these genes is at-risk for celiac disease.) Read more.
By Amy Ratner, Beyond Celiac Medical and Science News Analyst
What condition can have no symptoms but left untreated can lead to serious consequences, including death?
High cholesterol might to come mind.
But celiac disease should, too, says Francisco Leon, MD, chief medical officer and chief executive officer of Celimmune, a company developing a drug to treat celiac disease that does not respond to the gluten-free diet.
“We are all so into the culture of symptoms,” Dr. Leon laments. “People who think they are not sick, in fact, may be sick even if they don’t have obvious symptoms.”
This has become abundantly clear to Dr. Leon in his work on AMG 714, a drug that neutralizes a molecule, called IL-15, that is believed to be a key driver in celiac disease. Celimmune, a clinical development stage immunotherapy company, is currently conducting Phase II clinical trials to evaluate AMG 714 as treatment for non-responsive and refractory celiac disease. Read more .
By Amy Ratner, Beyond Celiac Medical and Science News Analyst
Celiac disease is entering a new phase that recognizes it as a serious, burdensome condition with a high unmet need for treatment options beyond the gluten-free diet, says an article published in the journal, Gastroenterology.
Additionally, scientists, government regulators, pharmaceutical companies, patient advocates and patients agree that all need to collaborate to improve the lives of those living with celiac disease. Beyond Celiac is developing technology to bring these stakeholders together to create solutions.
The journal article, published in the September issue, is a summary of findings of the 2015 GREAT3 workshop sponsored by the Food and Drug Administration (FDA) and several gastroenterological associations. Beyond Celiac also provided financial support to the workshop.
GREAT3 stands for Gastroenterology Regulatory Endpoints and Advancement of Therapeutics. Celiac disease took center stage on the second day of the two-day meeting (the first focused on inflammatory bowel disease).
The workshop focused on:
- Identifying patients with celiac disease who would be candidates for drug treatments
- Defining what patients, gastroenterologists and the FDA perceive as the benefit of these treatments
- Defining how the clinical benefits could be measured in drug trials in ways that would lead to drug approval
Cosmopolitan Covers the Link Between Celiac Disease and Infertility
In a one-on-one setting, Beyond Celiac CEO Alice Bast often hears from women who have suffered through multiple miscarriages and stillbirths due to undiagnosed celiac disease. It’s a story Alice can relate to; she herself delivered a full term stillborn, a baby girl she named Emily, and experienced multiple miscarriages before her diagnosis. It’s not a story, however, that is commonly spoken about in the public arena.
The popular magazine Cosmopolitan reported on Alice’s reproductive health struggles, heightening awareness of both the seriousness of celiac disease and its many signs and symptoms. After sharing the article on social media, Beyond Celiac noticed that some women were asking their friends who shared the original article for more information on celiac disease testing. This information is clearly much needed by women who have unexplained infertility, as 4 to 8 percent of them may have undiagnosed celiac disease. Within the Beyond Celiac Facebook page, women were connecting over their shared experiences of such great loss.
Beyond Celiac encourages you to read the article and share this important message across social media to raise awareness of the many ways celiac disease can show itself. Read the full story here: “I Didn’t Find Out I Had Celiac Disease Until I Started Miscarrying.”
Dining out when you have celiac disease brings up questions that most people will never have to deal with. Will my dietary needs be taken seriously? Are the meal ingredients truly gluten-free? Do the chef and kitchen staff know how to prevent cross-contact?
You always take risks when someone prepares food for you and your family, but you can minimize those risks by understanding how the restaurant kitchen works and where cross-contact is most likely to occur. Our Hot Spots in the Restaurant infographic and tip cards will educate you about the typical restaurant kitchen and give you the information you need to ask the right questions about the preparation of your meal.
Author Paul Graham speaks with Beyond Celiac about his new memoir, In Memory of Bread (Clarkson Potter, $26.00), an account of his celiac disease diagnosis and the life changes that came along with it. Graham was diagnosed with celiac disease in his 30s and had, until then, enjoyed brewing beer, eating his wife’s homemade bread and making meals loaded with gluten. All of that changed when he started a gluten-free diet.
In the interview, Graham talks about his last gluten-filled supper, the process of learning to cook gluten-free meals, reaching men who are living with undiagnosed celiac disease and how his life has changed now that the taste of bread is a mere memory.
Bonus! You could win a free copy of In Memory of Bread, plus gear from Beyond Celiac, just by filling out a form.
Allergic Living Sneak Peak: Chicken and Butternut Squash Curry
By Christina Frantzis
Cozy up on cool nights with this nourishing stew. It boasts mild, warm spice and flavors so rich that no will guess it came together quickly. This recipe makes 4 servings and is free of gluten and all top allergens.
- 1 Tbsp. olive oil
- 8 boneless skinless chicken thighs, quartered
- 1¼ tsp. salt
- ½ tsp. ground coriander seed
- ½ tsp. garlic powder
- ½ tsp. onion powder
- 14 oz. fresh cubed butternut squash
- 1 Tbsp. gluten-free curry powder
- 1½ cups (350 mL) gluten-free, allergy-friendly chicken broth
- 2 Tbsp. water
- 1 Tbsp. lemon juice
- 1 Tbsp. cornstarch
- 1 cup frozen peas
- 4 cups (950 mL) cooked quinoa or rice
Teal Pumpkin Project® is a worldwide movement to create a safer, happier Halloween for all kids. Putting a teal pumpkin on your doorstep means you have non-food treats available, such as glow sticks or small toys. Providing non-food options promotes inclusion for trick-or-treaters with food allergies or other conditions, like celiac disease. It’s a simple act that means so much. This year, you can help make sure there are teal pumpkins on every street in America this Halloween.
Visit www.tealpumpkinproject.org for more information on this initiative.
Launched in 2014 by Food Allergy Research & Education (FARE), the Teal Pumpkin Project promotes safety, inclusion and respect of individuals managing food allergies. This nationwide movement offers an alternative for kids with food allergies, as well as other children for whom candy is not an option, and keeps Halloween a fun, positive experience for all!
You and your kids should be having fun on Halloween and making memories – not stressing about gluten exposure. Halloween is tricky for parents of kids on a gluten-free diet or who have food allergies. Beyond Celiac Blogger Ambassadors Cindy Gordon and Jackie Ourman both have families with multiple special dietary needs. Together with Beyond Celiac volunteer Julie Terrana of Best Whole Self, they dish on how to keep Halloween fun without getting spooked by gluten and allergens.
My family has taken trick-or-treating head on and have tried several ways to enjoy the festive celebration. The first year was too overwhelming for us to even attempt it, so we had our own big celebration at home with special treats. After we experienced that, we decided that we needed to give it a try. We have allowed our kids to trick-or-treat to the houses they wished in the neighborhood, then upon arrival home we sorted the candy. We donated any gluten-containing candy. We have a strict “no eat” policy while we are in the actual trick-or-treat process. Feeding your kids a filling dinner before you head out is key as it helps cut down the urge to sample treats before they get home.
We have also tried the method of trick-or-treating at select houses. Ahead of time, I visited these neighbors and gave them special treat bags filled to the brim with ghoulish safe treats. Then, we only visited these houses. This ensured that my children got only safe treats. It is important to keep your kids safe, but sometimes you need to step outside your comfort zone and plan ahead so you can have some spooky but safe fun!
Get my top eight tips for trick-or-treating with kids with celiac disease or food allergies here.
Jackie Ourman, Celiac and Allergy-Friendly Epicurean (C.A.F.E.)
We’ve set up a bartering system for Halloween. The kids can trade in their unsafe candy for five cents per piece and then I’ll take them to the store after Halloween so they can choose something to buy, like a pack of Pokémon cards or a small toy.
They enjoy trick-or-treating because it is fun to dress up in costumes and see all of their friends in the neighborhood. Their favorite two houses are one that serves hot cider, it really hits the spot on a chilly fall day, and another that opens up for just a few hours and gives out full size Hershey bars! A lot of houses put out baskets for the kids to choose their candy and since they are familiar with what’s safe for them, they can pick those items.
None of my kids would want to change anything. It’s still fun to trick-or-treat even though we have celiac and food allergies. It’s not only about the candy and even so, there is still a lot we can eat. With careful preparation, they can enjoy Halloween as much as anyone else. Now that they are older (7, 10 and 12), it makes it a lot easier because they can do label reading on their own and use me as a resource to help with confusing labels.
For more tips from me and input from my boys, check out an article in Bon Appétitcalled Yes, Your Kids Can Still Trick-or-Treat with Food Allergies.
Julie Terrana, Best Whole Self
Whether your child is dressed as a ghost, a witch or a zombie, the scariest thing they will face on Halloween night is the possibility of coming in contact with gluten. But avoiding gluten does not have to be a daunting task. If you are afraid that your child will encounter gluten this Halloween, just unveil the M.A.S.K. to having a fun, and safe night!
M ake your own Halloween goodie bags with stickers, glow sticks or small toys.
A sk your children to show you what they received from other houses to be sure it is safe.
S hare the “Teal Pumpkin Project” with your neighbors so that they know to give gluten-free treats.
K eep your child’s favorite gluten-free treats at home in case you have to swap out any gluten-containing candy that they receive.
Have a wonderful and safe Halloween!
Parents, do you need a little help getting through a gluten-free Halloween? Beyond Celiac Blogger Ambassador Taylor Miller of GlutenAway has a gluten-free candy list to give you some extra information on identifying safe gluten-free candy for your little ones. Check out Taylor’s Gluten-Free Halloween Candy List for more information.
Ingredients change often and manufacturers can change their processes with no warning. Candy lists like this one are only meant to serve as a guide; they cannot serve as a definitive answer on the gluten content of a product, especially as different sized candies can be made differently, even if it is produced by the same company. Always read labels and contact the manufacturer if you have any doubts about a product’s gluten-free status.
By Sophia Kagan, 12-year-old Beyond Celiac volunteer
Hi! Welcome to my October blog about Halloween, where I address the big question: What candy is safe to eat?
Halloween is one of the best holidays at the best time of the year, yet the issues surrounding safe, gluten-free candy and treats always enters the picture. Being prepared is the key.
So what can you do early on to prepare for trick-or-treating? First, do your research. You and your parents should find lists of gluten-free candy from reliable sources on the Internet and work together to double check that they are truly gluten-free. You and your parents may find blogs and articles, but to be safe, go to the websites for the candy companies and see for yourself what is gluten-free and what may contain gluten. If the company websites do not clearly explain this, contact the candy companies directly the old fashioned way—by telephone.
I would love to give you a list of all of my favorite gluten-free candy, but we all have our favorites. Some things are obvious: If there are “crunchies” or pieces of pretzels in the candy, it’s obviously out. A hidden issue with candy can be malt, which is made from barley. While some candies have rice-type crunchies, these may actually still contain gluten. Be careful!
Another thing to be aware of, and I know this from years of doing the gluten-free treat-or-treat thing, is that “fun-sized” candy sometimes is made from the leftovers or rejects from larger bars. These can get melted down and remade. In this case, you may end up with gluten contamination, even though the regular sized version of the same candy is safe. Consult the company websites!
Some things that appear to always be gluten-free, such a gummies, might not be. Did you know some licorice contains gluten?
So how about trick-or-treating etiquette? At some houses, you will be able to choose whichever candy you want. But, at other homes, someone will drop a candy right into your bag. If you do come to a house and someone is like that, ask politely to choose your candy. If this fails, do what I do! Get your friends together after trick-or-treating and have a candy exchange. Last year I got all the candy I love and can eat and happily traded away those I could not. It’s a fun time with friends and scores you the best gluten-free loot!
So what is not so obvious? If you are like me, and you like to use makeup or face paint for your costume, check the ingredients of the product. Occasionally, something could contain gluten and may make you sick if unintentionally ingested. A lot of make up from Halloween stores may not contain an ingredients list, so call the companies if you have to or borrow from mom when you can!
I hope you have a great Halloween. Check out my Hot Products blog, too! I hope you enjoyed this post and I’ll see you in November for Thanksgiving!
International Tampere Celiac Disease Symposium: Measuring Treatment Outcomes
November 24-26, 2016 in Tampere, Finland
The University of Tampere School of Medicine warmly welcomes medical professionals to attend the international Tampere Celiac Disease Symposium – Measuring Treatment Outcomes. Novel therapeutic approaches for celiac disease are at our doorsteps, and this scientific meeting will focus on ways to measure clinically significant gluten sensitive readouts in celiac disease and in clinical drug/device/vaccine trials. In addition, the second Maki Celiac Disease Tampere Prize (€15,000) for significant contribution to the fields of Celiac Disease and Gluten-Induced Disease Entities is awarded at the symposium. The meeting takes place parallel to the Gluten-Free Life Expo 2016 organized by the Finnish Celiac Society. Learn more.
In the Headlines:
- Gluten Exposure is Common Among Celiac Disease Patients
- Alice Bast, Beyond Celiac CEO, Interviewed on the Just Talking Podcast
- Gluten-Free Diet Could Help Control Seizures in People with Epilepsy Who Have Celiac Disease
- How to Navigate Networking Events When You Have a Food Allergy
On the Shelves: