Note from Alice
Stop Making Light of Gluten-Free
Allergic Living Sneak Peek
Feature: NHL Star Max Domi
Make Your Voice Heard!
Give your feedback to the FDA
Gluten-Free Food Tax Deduction Guide
NEWS & UPDATES
Beyond Celiac CEO Alice Bast takes on the gluten-free fad diet in the Huffington Post
Every day, I have to fight to prove that my disease is real, legitimate and serious. Every day, I have to pay attention to everything that I put in my mouth. One slip up can leave me incapacitated for days and set me up for long-term health consequences like thyroid disease, osteoporosis and even cancer.
Like 3 million other Americans, I have celiac disease — a serious genetic autoimmune disease. There’s no pill to treat it. No magic cure. All we can do is try to avoid gluten 100 percent of the time. Let me tell you, this is no easy feat.
Celebrities, various companies and, now, presidential candidates are making it increasingly difficult for people who need a gluten-free diet to be taken seriously. This disregard for the health of the celiac disease community leads us to be exposed to gluten, which is poison for us. We become sick for days, even weeks, and we are vulnerable to more serious health risks if repeated exposure occurs.
Joy Behar. NASCAR. Miley Cyrus. Gwyneth Paltrow. This is just a small list of the celebrities and public entities who have openly poked fun at celiac disease and the gluten-free diet, or who have helped spur the misconception that gluten-free is the way to be for all.
These are the European pancakes known as crêpes, blinis, and blintzes etc., which are extremely thin. There is also an Italian pancake known as manicotti which is similar. They are not the same as the American fluffy pancakes. Pancakes in England are traditionally made on Shrove Tuesday, (also known as Pancake Day), the day before Ash Wednesday in Lent to use up the dairy ingredients.
I normally make my Tiramisu in an 8×8 pan, with coffee and Kahlua syrup, and more Kahlua in the mascarpone layer. In a murder mystery book I was reading, they mentioned tiramisu cupcakes and I thought why not. Then, I decided to make them with Irish Cream liqueur for St. Patrick’s, tinted green, but not containing mint or pistachio. Why does everyone think green means mint or pistachio? Mine were green for an “everything green” party, and they were devoured. People didn’t care that they were gluten-free.
About Chef Oonagh Williams
Chef 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 food allergy diets. Recently, she advised three celebrity chefs in Boston.
Chef Oonagh has a gluten-free (and other food allergies) cooking demo and talk at Merrimack Library on March 3 and will be at the Health and Wellness Fair on May 14.
Like her at Gluten Free Cooking with Oonagh on Facebook where she posts recipes, links to her NH ABC appearances and products she’s found and tasted. Connect with her on Skype for help in following a food allergy diet. Locally, she teaches healthier food cooking classes for everyone, as most real food is naturally gluten-free and free of many other allergens.
Make sure you get the Beyond Celiac eNewsletter delivered right to your main inbox! If our emails go into your Promotions folder, you can do one of two things:
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You hold the key to increasing celiac disease diagnoses! With your help, we can have a huge impact on the 83% of Americans who remain undiagnosed or misdiagnosed so that they can get their prescription of the gluten-free diet.
How? Your biological relatives are most at risk for celiac disease because it is genetic and runs in families. Tell them about their risk and encourage them to get tested for celiac disease to prevent the health issues that can come up due to undiagnosed celiac disease. This could include infertility, osteoporosis, thyroid disease and other autoimmune diseases, and even certain cancers.
We know that many in our community have tried to get their family members tested with little luck. We can help change that! Beyond Celiac research showed that there is a right way and wrong way to talk with your family about getting tested for celiac disease.
Throughout March, the Beyond Celiac staff is tackling your questions about family testing and how best to approach a conversation.
Check it out! Talk to them. Tell them the facts. Urge them to test.
We can show you how.
Thanks to Three Bakers for sponsoring this campaign!
Did you know 44% of people with celiac disease we surveyed say they get glutened at least once a month ? And, 12% say they intentionally cheat on the gluten-free diet.
At Beyond Celiac, we’re always trying to get to know our community better. Back in October, we launched our ASKtober survey initiative. Over 1,500 community members responded with their thoughts on living with celiac disease and the challenges that go along with it. See what your fellow community members had to say!
Thanks to Love With Food for sponsoring this campaign!
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 Kim Turet
What’s your relationship to celiac disease?
My daughter was diagnosed in 2004 at age eight after years of stomach pain and neurological symptoms.
Can you tell us a little about your daughter’s path to diagnosis?
We saw many specialists, none of whom were able to shed any light on her symptoms, until one gastroenterologist suggested doing an exploratory endoscopy. We had never heard of gluten or the word “celiac” and the only guidance we were given was to avoid bread and pasta. We had no idea that the books we ordered from Amazon were about to unleash an avalanche of new information and lifestyle changes.
Can you talk about you and your daughter’s lives after diagnosis and your experiences with celiac disease?
The first year was crushingly overwhelming and there seemed to be nowhere to turn for guidance. The majority of people we encountered had never heard of celiac disease or even the word gluten. Local stores did not yet carry gluten-free food, so we ordered most of her grocery items online through celiac disease-focused vendors, which was quite expensive. It has become so much easier! However, eating anywhere other than home continues to bring challenges.
What are your hopes for the future and what changes do you wish to see in the celiac disease field?
- I would like to understand why some people with one or both celiac disease genes develop the disease while others do not.
- I hope that one day it will be easy to travel, both domestically and abroad, without the need for extensive advanced planning or packing your own food.
- I hope that one day both over-the-counter and prescription medications will comply with the same strict labeling laws as the food industry so that it can be readily determined if a medication is safe for a person with celiac disease to take/be prescribed.
- I hope that one day, perhaps cross-contact will not be as significant an issue and that those with celiac disease will be able to eat freely and without worry, especially in public places and at special events.
Meet Vic McInnis
What is your relationship to celiac disease?
Believe it or not my celiac disease diagnosis has had a positive impact on my life. My life was sedentary and I had stopped thinking about the foods I was eating. After I was diagnosed, I became more active, ate much better and started taking care of myself. Since my diagnosis I feel better than I have in years and my diagnosis led to my two daughters and my mother getting diagnosed.
Can you tell us a little bit about your path to diagnosis, both the successes and struggles?
The main obstacle to my diagnosis was me. I was embarrassed to tell my doctor all of my stomach and digestive problems and I suffered with them for over a year. When I did tell her, she immediately recommended I get to a gastroenterologist and be tested for celiac disease. My daughters were not so lucky and had to fight with doctors to get the tests. You have to be your own advocate in the process.
Can you talk about your life after diagnosis and your experiences living with celiac disease?
I hate having to call restaurants before we go. I hate having my wife worry every time we go to a restaurant. Now when I get glutened, I get violently ill. We eat at home more.
In your opinion, what are the biggest flaws of the gluten-free diet?
Well, there aren’t gluten-free Krispy Kreme doughnuts yet. My main drawback is when I focus on the processed foods, the snacks, the cereals I can’t have, not the good foods that are easily available. Fruits, vegetables, meats, fish are all gluten-free and have given me a great diet, but I still miss those snacks I used to keep in the cupboard.
What are your hopes for the future and what changes do you wish to see in the celiac disease field?
I would like to see a treatment that isn’t based on suppressing the patient’s immune system. I would like to see celiac disease acknowledged on the same level as nut, fish and diary intolerances and not cause a scene when you mention it to your waiter. I would like a simple and cheap test to see if food is truly gluten-free and that can be used at a restaurant.
By Ronnie Shuker
When the Arizona Coyotes took to the ice to play the Los Angeles Kings for their season opener in October 2015, Max Domi finally conquered the mountain he’s been climbing since he was 12 years old. He’d achieved his lifelong dream of making the National Hockey League, just like his father, Tie Domi, did 25 years ago with the Toronto Maple Leafs.
On his way to the big time, the younger Domi helped his Ontario Hockey League (OHL) team to two league titles in 2012 and 2013. Then, in January 2015, he played a leading role as Team Canada took the gold at the 2015 World Junior Championship in his hometown of Toronto. But his ascent to the top of the hockey world hasn’t been easy.
Eight years ago, Domi, now 20, was diagnosed with Type 1 diabetes. It wasn’t all that surprising, given a family history of the disease on his father’s side (though his dad doesn’t have it). But then came the double-whammy four years later when he tested positive for celiac disease.
“It turned out that my whole esophagus was covered in ulcers and I had no idea,” Domi says
Photo credit: CLAUS ANDERSEN/Getty
St. Patrick’s Day is right around the corner! For many of you, that could mean enjoying some gluten-free beer to celebrate the occasion. Here are important facts that you should know about gluten-free beers and other alcohol before you head out:
- We don’t know yet if “gluten-removed” barley-based beers are safe for people with celiac disease. That’s because the testing method used has not yet been validated. Until we know more, Beyond Celiac advises avoiding barley-based beers. Luckily, there are plenty of safe gluten-free beers on the market! Get more information on “gluten-removed” beer here.
- Most liquors are safe for people with celiac disease. Pure , distilled liquors, regardless of their starting ingredients (including those made with wheat, barley or rye), are considered gluten-free. Be on the lookout for hidden gluten in liquors that use flavorings added after distillation. For more information on liquor labeling, download and watch the Beyond Celiac webinar featuring Tricia Thompson, MS, RD, “It’s Not Just Food Anymore: An Update on Gluten-Free Alcoholic Beverage Labeling.”
- Food coloring used to make green alcohol for St. Patrick’s Day should be free from gluten-containing ingredients. Be sure to ask your bartender about ingredients before drinking.
- Wine is gluten-free. Enjoy!
Beyond Celiac encourages you to check out the webinar, “It’s Not Just Food Anymore: An Update on Gluten-Free Alcoholic Beverage Labeling” for more information on alcohol labeling.
Hydrolyzed and fermented foods are a common source of confusion for people with celiac disease. Learn about the issue and how to voice your opinion.
The deadline for commenting has been extended from February 16, 2016 to April 25, 2016.
Did you know some people may qualify to receive a tax deduction because of a medical need for gluten-free foods? There’s a lot to know when it comes to receiving these tax benefits, so Beyond Celiac broke down the rules for you in our Gluten-Free Tax Deduction Guide.
We want to know more about your or your child’s gluten-free college experience! Please take a brief survey to better understand what needs college students have and how we can help.
Did you know that Beyond Celiac offers a gluten-free training program for schools? Learn more about the program here.
By Sophia Kagan, 12-year-old Beyond Celiac volunteer
Hi! I’m back for March and here to tell you about gluten-free travel in the United States.
Traveling gluten-free is a lot of work when planning a trip. You need a lot of information in order to be safe, healthy and happy on your trip. My parents always research the places where we travel well in advance whether we are staying with friends, family or in a hotel.
If staying in a hotel, your parents should call to ask for a small refrigerator for medicinal purposes because the food you will bring with you is your medicine. You eat gluten-free so you don’t get sick. My parents found that many hotels often offer a small refrigerator free of charge. Your parents also can ask the hotel if they have or will get gluten-free food like bread and pasta. Keep in mind that some hotels or other places to stay in may not have gluten-free food to fit your needs. When we stay with friends or family, we bring a small new pan and cookie sheet because their cooking pans might have traces of gluten on them.
Before your family books a trip, you or your parents should research where you want to go and look up gluten-free restaurants on the internet, so you can have information about the foods they serve and whether a restaurant is celiac disease-friendly. Another good thing to research is gluten-free stores in the area you’re interested in traveling to. If you run out of food, you can always stock up there.
One of the most important things to remember is a gluten-free dining card. Your parents can find these online or can type one out. A gluten-free dining card lists safe and unsafe ingredients on it and should be given to restaurants. Another good thing to do is download apps that help you find gluten-free restaurants. Restaurant review apps are extra handy when it comes to this. You or your parents can look up good apps online. Another strategy is to look up the restaurants you found on their websites. Some include a gluten-free menu or even gluten-free info! Don’t forget to check out the Beyond Celiac Dining Tips sheet.
I always travel with my favorite foods. You or your parents should remember to pack foods in your bags. Foods like gluten-free bread, sandwiches, chips, pretzels, and other small foods are very resourceful for the plane or car if you get hungry. I guarantee it will come in handy at some point in your vacation. I found that airports now have gluten-free food too! Whether you are driving or taking a plane, bringing quick snacks like gluten-free crackers and vegetables like carrots and celery will make you a happy traveler.
Well, that’s all for now! I’ll see you soon on www.GlutenFreeHotProducts.com and my next blog!
Seminar: How to Live Gluten-Free When Away at School
Wednesday, March 23, 2016 from 6:30 p.m. to 7:30 p.m., Paoli, PA
Do you or your child have questions about living gluten-free while at college? Beyond Celiac is here to help! Join Vice President Jennifer North at Paoli Hospital as she shares tips on what you can do to ease the burden. As a mother of a child with celiac disease, Jennifer has firsthand knowledge of navigating the college system.
To register, visit www.mainlinehealth.org/events or call 1-866-CALL-MLH.
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 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 a representative from Beyond Celiac (formerly known as the National Foundation for Celiac Awareness).
In the Headlines:
- Huffington Post: Stop Making Light of the Gluten-Free Diet
- A Message to Parents: Be Aware of the Risks of Gluten Exposure from Toys
- Beyond Celiac Denounces Remarks Made by Ted Cruz about Gluten-Free Diets
On the Shelves: