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Letter from Alice: How We’re Creating a World Beyond Celiac
We heard you. We at Beyond Celiac are working tirelessly every day to accelerate research and reduce diagnosis time. Our goal is to expedite a world beyond celiac.
Our community is at the top of our minds all the time. Our work is to help advance treatments and eventually a cure so that we can eat without fear and live life to the fullest. Study after study has shown that the gluten-free diet is not enough; that friends and family members may not take your diagnosis seriously; that your concerns with psychological and neurological symptoms are being overlooked; that many of you are suffering, waiting years to be diagnosed.
That’s why we invested significant time and resources into working with our community to develop our patient registry Go Beyond Celiac, which now collects important patient data to better help researchers and clinicians understand celiac disease and push their scientific efforts forward. Last year alone, Go Beyond Celiac participants completed 10,000 surveys, allowing us to get a real glimpse into what is important to you and what you truly experience. The only way we are going to understand celiac disease and get to a cure is by studying it and listening to those who live with it every day.
Our science team and scientific advisory board created and is implementing the only transformational patient-centered science plan in the celiac disease space. It’s focused on accelerating solutions so that we can live our best lives, free from worry about every bite. The work of our science team includes important biotech and pharmaceutical partnerships, recruiting for clinical trials, and the Beyond Celiac grant program. We are actively encouraging study in the field of celiac disease by offering $800,000 in funding, making it an interesting and viable career path for the best and brightest.
Additionally, we are regularly updating our research news feed with the latest information, such as a recent study finding that the risk of developing cancer with celiac disease is small and limited to older adults and news on therapies currently in clinical trials.
Beyond Celiac has demonstrated that we can change the future. We did it already by ensuring that gluten-free food is readily available and more affordable. There was a time when those with celiac disease couldn’t get a loaf of bread or a slice of pizza. Now we have access where we live, work, and play.
We are also expanding our own research. Our work on brain fog was groundbreaking, and now we’ve partnered with the National Minority Quality Forum to uncover diversity and disparities in celiac disease diagnosis. Preliminary findings will be presented at Digestive Disease Week this year, the premier conference for gastrointestinal research.
All of this is just a part of what we do each day at Beyond Celiac. Our mission is to unite with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. Our strategic approach to targeted research aims to produce an effective treatment or cure by 2030. However, we can’t do any of this without you. Please consider giving today to help accelerate our work and get us closer to a cure.
We thank you in advance for your commitment to our cause.
Together for a cure,
Alice Bast
A cake with a soft fluffy crumb and plenty of coconut is the perfect thing to have after a heavy dinner. Top it with a yellow Peep for an Easter twist!
This recipe was provided by Taleen Benson, author of Just as Tasty: Gluten-Free and Eggless Baking Through the Seasons.
Kugel, or egg noodle casserole, is a common sight at any Jewish event, including Passover. Try making this delicious side for your next dinner, Jewish or not.
Our 5K is Back and We’re In It to Win It!
This May our annual Step Beyond Celiac 5K is back! We have our sights set on a cure for celiac disease and every step you take helps get us closer to our goal. Proceeds raised from our Step Beyond Celiac 5Ks support our work to accelerate treatments and a cure for celiac disease.
The 5K will be virtual, so anyone and everyone can participate. A virtual race means you can complete the 5K whenever you want in May, wherever you are. Feel free to walk, run, bike or roll the distance, whatever you prefer.
Sign up before May to secure your Step Beyond Celiac 5K 2022 t-shirt!
Research News
Increased risk of cancer in celiac disease is small and limited to diagnosis after 40, study finds
An Increased risk of cancer in celiac disease is small and limited to diagnosis after 40, according to a new study from Sweden.
Cystic fibrosis patients changed the future of the disease — can celiac disease emulate their success?
Cystic Fibrosis patients banded together and changed the future for those living with the disease. Can increased patient participation produce similar results for celiac disease?.
Clinical Trials
PROACTIVE Study
Are you still experiencing celiac disease symptoms despite your best efforts to follow a gluten-free diet?
The PROACTIVE Celiac Study is looking for people between the ages of 18 and 70, who have biopsy-confirmed celiac disease and have been on a gluten-free diet for at least the last 12 months. You will not be asked to ingest gluten in this study. The goal of this phase 2 clinical trial is to test the safety and effects of the investigational medication PRV-015. In combination with a gluten-free diet, PRV-015 aims to reduce symptoms and intestinal inflammation caused by accidental gluten exposure.
Allergic Living Spotlight
Easter Treats 2022: Our Top Allergy-Friendly Finds
Spring has sprung, and this April we welcome it with Easter and Passover. Check out this list of the best allergen-friendly spring sweets so you can enjoy the food, too! Even if you don’t celebrate either holiday, be sure to grab a few of these treats, because some are only available this time of year.
News, Events & Updates
Take the 2022 Women’s Health Survey
Please take five minutes to complete the 2022 Women’s Health survey. Your participation will make a difference—these insights gathered from women across America will be shared with the organizations involved so that they can better serve all women, including Beyond Celiac. The survey is anonymous, but if you would like to enter a cash giveaway you may enter your email address at the end.
Shop Charitably with Amazon Smile
You can donate to Beyond Celiac without spending an extra dime! When you buy eligible items on Amazon Smile, 0.5% of your purchase will be donated to Beyond Celiac at no extra cost to you. Here’s how:
- Visit smile.amazon.com.
- Search for “Beyond Celiac” in the search bar on the bottom right-hand side of your screen.
- Select Beyond Celiac.
- Start shopping!
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our April-born community members! When your big day rolls around, consider raising money for Beyond Celiac so that we can help fund new research by scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years! These fundraisers help make our important work possible.