Note from Alice
You are a trailblazer
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People whom history dubs “trailblazers” often originally found themselves in a situation clogged with “underbrush,” the figurative weeds and shrubs that stood in their way toward progress. They decide to start hacking away in some direction, not exactly sure where they are going or how they will get there, but through pure will, they move forward. At some point, all that hacking away at the brush creates a path for others to see and follow.
The way I see it, the celiac disease community of today are true trailblazers. Celiac disease patients are standing up and saying, “The gluten-free diet is not enough!” We are sick of getting glutened, tired of not being taken seriously, and fed up with being afraid of food. 70% of the celiac disease community are still exposed to gluten, despite their best efforts to manage the diet. People with celiac disease, even after getting diagnosed, are still suffering. We need better. We need options. We need a cure.
Five Actions Toward a World Beyond Celiac
There are concrete things we can do as a community to blaze the trail to a future without celiac disease. Here are five suggestions:
- Raise awareness. Most people still don’t know much about celiac disease and the challenges we face. Share the video and information at www.BeyondCeliac/60forCeliac to build empathy and support. More awareness opens the doors to better treatment options, increased diagnoses, and more people taking this disease seriously.
- Encourage celiac disease testing for those most at risk – the family members of those who are already diagnosed. To make sure that you approach the conversation in the most successful way, check out the resources at www.SeriouslyCeliac.org.
- Help a newbie get the hang of managing celiac disease. Order or download a free Getting Started Guideat www.BeyondCeliac.org/gettingstarted and send it to a newly diagnosed friend, coworker, neighbor, family member or loved one.
- Stay informed. The field of celiac disease research is rapidly expanding. Get the latest at www.BeyondCeliac.org/ResearchOptIn.
- Take good care of yourself! Perhaps surprisingly, 10% – 12% of our community who are diagnosed with celiac disease knowingly eat gluten at least occasionally – some even more often than that. Even though the gluten-free diet is not enough, it’s the best we’ve got for now. Research shows that our health outcomes are much better if we stay strict with the diet. We are in this together and we need our health and our wits about us to educate and advocate for more research, effective treatments, and ultimately a cure.
We truly have made great strides, not just in access to gluten-free foods, but also in raising awareness and increasing the rate of diagnosis. In 2003, only 3% of those with celiac disease were diagnosed. That number has increased by 6 times, but we still have a long way to go.
Celiac disease is the only autoimmune disease with a known trigger. Many scientists believe that unlocking that mechanism will provide a cure for all autoimmunity. Wouldn’t it be amazing to have a cure? Much of our work is still before us. Our community needs to keep hacking at the underbrush, building on the work done to date and carving the trail for the future.
To living life Beyond Celiac,
Beyond Celiac CEO
In England I used to make real mint jelly using Bramley apples – really tart, sour apples that cook to a wonderful apple pie. Granny Smith is the closest over here and still not sour enough. You can make the jelly several days in advance. Pour into a jar and refrigerate until needed. Enjoy!
This almond cake is naturally gluten-free, no leavening, no extracts, easily dairy-free for Passover, but wonderful any time.
A quick and easy recipe that will become your new favorite sauce. Plus, a dairy-free option!
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 food allergy diets, as well as 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.
Chef Oonagh was the only “food” speaker on stage at the April 1st Boston Celiac Disease Symposium with top doctors from Beth Israel Deaconess Medical Center (BIDMC), Massachusetts General Hospital and Harvard Medical School. Chef Oonagh’s demo and discussion included samples of almond flour cake and cashew nut hummus, along with nutritional information, advice on how to cook so they will eat, eating gluten-free in restaurants and showing how to cook gluten-free to motivate people not to cheat on the gluten-free diet.
Chef Oonagh’s six hour demystifying gluten-free baking class included gluten-free breakfast pastries, gluten-free pizza/focaccia bread made by class for lunch with soup and salad, a lecture on flours, starches etc. and baking labs comparing different flours, blends, mixes for chocolate chip cookies, bread dough and yellow cake.
Buy Chef Oonagh’s 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 food allergy diet.
By Amy Ratner, Beyond Celiac Science and Medical News Analyst
Three foods that frequently raise questions for people with celiac disease who are following the gluten-free diet are being looked at more closely by scientists.
Gluten-removed beer, rice and oats were all recently in the news:
- A pilot study by the Gluten Intolerance Group (GIG) at the University of Chicago’s Celiac Center found that the proteins in gluten-removed beer caused a reaction in blood samples taken from participants who have celiac disease.
- A study by researchers at the University of Illinois at Chicago found that people who reported being on the gluten-free diet had higher concentrations of arsenic in their urine and mercury in their blood.
- AOAC International, an independent association that develops science-based analytical standards, started work on standards for measuring gluten in oats. Although oats are not a gluten-containing grain, cross-contact often occurs because of other grains. Additionally, a small percent of people with celiac disease react to oats even when they are safely grown, processed and manufactured.
By Amy Ratner, Beyond Celiac Medical and Science News Analyst
Most patients in the CeliAction clinical trial who received a drug to treat celiac disease did no better than those who were given a placebo, study results published in the journal Gastroenterology show.
Study participants received varying doses of latiglutenase, a combination of two enzymes that break down gluten, or a placebo, which does not include the actual drug. All showed improvement through an intestinal biopsy, blood test results and lessening of symptoms. But overall those who were given the drug did not do better compared to those who were not given the drug.
Lead author Joseph Murray, M.D. of the Mayo Clinic in Rochester, Minnesota, attributed the across-the-board improvement to a “strong trial effect.” He noted that because participants had to take the drug or placebo three times a day, they had a continual reminder of the gluten-free diet and might have changed their behavior to follow it more strictly.
That, ultimately, caused the Phase 2 trial to fail to meet its primary goal of showing that latiglutenase can reduce damage to the intestine compared to the placebo.
On March 28, 2017, the US Preventive Health Services Task Force published a statement on celiac disease testing, announcing that there is insufficient evidence to “assess the balance of benefits and harms of screening for celiac disease in asymptomatic individuals.”
Leaders of Beyond Celiac agree with the Task Force that more research, including population-based studies, are needed to assess the value of screening in the general US population, and in targeted populations at increased risk such as those with family members who have celiac disease and those with other autoimmune conditions. That research will then provide the Task Force with the evidence it needs to say definitively in what situations screening would – or would not – be valuable.
In the absence of that research, it is important to continue diagnosing people with celiac disease. “It is critical that the USPSTF statement be interpreted correctly,” says Alice Bast, CEO of Beyond Celiac. “People at increased risk because relatives have been diagnosed or with symptoms should strongly consider being tested. Waiting until definitive research is available to assess any benefits of screening can result in undiagnosed patients suffering needlessly.”
Not only will patients and their families benefit, but their healthcare providers, employers and health insurers will benefit as well.
By Lindsey Goebel, Beyond Celiac volunteer and Business Advisory Council member
As a patient with celiac disease, diagnosed before “gluten-free” became a buzzword, I’ve been committed to raising awareness about the condition through volunteering my time and taking a stance on social media. A few months ago, I became the mother of a celiac disease patient when doctors confirmed my two-year old also had the autoimmune condition. My first reaction was to worry about if my daughter would feel left out at birthday parties or summer camp. But, very quickly my mind raced to celiac disease’s many connections to other serious conditions including other autoimmune diseases and even certain cancers. That’s when I resolved to really get involved.
Campaigning for Meaningful Research
This week, as a volunteer for Beyond Celiac, I had the opportunity to join the digestive disease community on Capitol Hill to for biomedical research, healthcare accessibility and prevention-focused programs
Beyond Celiac is ramping up its efforts to accelerate celiac disease research. The truth is that the gluten-free diet alone is not enough to truly treat celiac disease. As many as 70% of people with celiac disease are still exposed to gluten, despite their best efforts to stay gluten-free. We’re pushing for treatment options so that patients can decide what’s right for them and their families; at the end of the day, people deserve choices in their treatment and not a once-size-fits-all approach.
In the coming weeks, we’ll be offering a unique opportunity for people to get involved in driving research forward in a new way, right from the comfort of your own home. Sign up for the Research Opt-In and you’ll receive an email alert when we launch a new campaign that will give you the ability to directly influence the research field.
By Claire Gagne
When we think of controlling celiac disease we usually think of food – people with the disease must not eat anything that contains gluten. But now a team of researchers is looking at whether exercise may also play a role in managing the condition.
“We know that people with celiac disease often have a dysbiosis [microbial imbalance] in their gut microbiome and new research is showing that exercise can help promote a healthy balance of the gut microbiome,” says Justine Dowd, a health psychology researcher at the University of Calgary in Alberta, who has celiac disease.
Photo credit: Getty & Allergic Living
We’re getting real about living with celiac disease. Many people are grateful for finally having their diagnosis, but that doesn’t mean everyday living is always a (gluten-free) piece of cake. With the help of our friend Christopher Snider, we’re talking to real community members about real life experiences with this serious genetic autoimmune disease. Keep an eye out for the release of these podcasts, beginning in late April.
- The Elusive Celiac Disease Diagnosis
- Cheaters: Walking Away from the Gluten-Free Diet
- Research Update: The Realities of Managing Celiac Disease
We’re breaking away from your traditional gluten-free substitutions! Thanks to Crunchmaster, we’ve released an infographic with clever substitutions to jazz up your gluten-free options.
Two major religious holidays are right around the corner: Passover and Easter. To help make your celebrations easier, we’ve compiled this list of products and recipes appropriate for Passover and Easter. Check them out below and feel free to share your favorite holiday recipe with us on Facebook!
- Gluten-Free Charoset from Elana’s Pantry
- Gluten-Free Matzo Ball Soup, from Gluten-Free Cooking on About.com
- Passover Quinoa Pilaf from Veg Kitchen*
- Middle Eastern Tomato Garlic Fish from The Shiksa*
- Passover Potato Dumplings from Coconutty on Food.com*
- Macaroon Cake from Anna Stockwell on Yahoo!*
- Gluten-Free Ham Glaze – Honey Mustard from Gluten-Free Recipe Box
- Gluten-Free Hot Crossed Buns from Teri Gruss, MS on About Food
- Potatoes with Olives and Sun-Dried Tomatoes from Williams-Sonoma*
- Sweet Easter Bread from Chef Oonagh Williams of Royal Temptations Catering
- Asparagus and Butter Balsamic Sauce from Glutenista
Get more timely recipes in the Beyond Celiac Gluten-Free Seasonal Recipe Box! For those of you celebrating Easter, visit Beyond Celiac Blogger Ambassador Taylor Miller’s site, GlutenAway, for a list of gluten-free and not gluten-free candy. Be sure to double check the labels before purchasing and eating!
*While this recipe is gluten-free, not all recipes on this website are gluten-free. As with all recipes, be sure to check all ingredients to ensure they are gluten-free before making.
We are loving these recipe demonstration videos! They’re a great way to guide you through the gluten-free cooking process, especially when you’re just learning the cooking ropes. Check out some of our favorites:
- Naturally Gluten-free Grains and Legumes: Minimizing Risk of Cross Contact with Wheat, Barley, and Rye from Tricia Thompson, MS, RD of Gluten Free Watchdog, LLC
- Mercury and the Gluten-Free Diet from Tricia Thompson, MS, RD of Gluten Free Watchdog, LLC
- Celiac Disease and Anorexia Nervosa Linked, Study Shows