The Beyond Celiac Newsletter
Monthly Newsletter
Note from Alice: Happy Celiac Awareness Month: Raise Your Voice!
May is Celiac Awareness Month! To celebrate, I invite you to raise your voice! Raise your voice about the seriousness of this autoimmune disorder. Raise your voice to help others get diagnosed. Raise your voice to say the gluten-free diet is not enough for our community. And raise your voice to share that if we work together with the right people, the right plan and right resources, an effective treatment or a cure is within reach as soon as 2030.
This month, as a part of our Celiac Awareness Month celebration, our goal is to raise $35,000 to expand our Reach Beyond Celiac Ambassador Program to further amplify YOUR voice! And thanks to a generous donor, if we meet our goal we unlock another $35,000 for celiac disease awareness via our Ambassador program! Our Reach Beyond Celiac Ambassadors are helping to spread awareness across the country by building a network of local celiac disease advocates. They provide support and resources for those with celiac disease in their communities and get our message out that a cure is possible if we work together!
Throughout the month we will be sharing stories and updates from our Ambassadors. I encourage you to follow along as we highlight each ambassador through social media and emails. And if you can, we hope that you will help us reach our goal of raising $35K in May! Additionally, we invite you to Step Beyond Celiac with us by running or walking in our Celiac Awareness Month virtual 5K any day this month. Proceeds support our work to accelerate a cure.
Thank you for all you do in support of Celiac Awareness! This month, I invite you to help us in our awareness efforts and take action to help us get us closer to a cure. There are so many ways to get involved: sign up for our patient registry, learn about volunteer opportunities, run our 5K and/or amplify the celiac voice by supporting our ambassador program. I also invite you to learn more about our current scientific initiatives, including our groundbreaking grant partnership with Janssen’s World Without Disease Accelerator group. Learn more about how you can create change this Celiac Awareness Month here. These are the opportunities that will accelerate treatments toward a cure by 2030!
Happy Celiac Awareness Month!
Together for a cure,
Alice
It’s time to Run the Virtual Step Beyond Celiac 5K
Every step you take helps get us closer to our goal of a cure for celiac disease. Proceeds raised from our Step Beyond Celiac 5Ks support our work to accelerate treatments and a cure for celiac disease. We encourage all participants to raise funds while running or walking 3.1 miles right where you are in support of research efforts for treatments and a cure. Lace up your running shoes with us this May for Celiac Awareness Month!
There’s Still Time To Register!
Thank you to our 2021 Virtual Step Beyond Celiac 5K Sponsors:
Gluten-Free Cooking with Chef Oonagh Williams
Salmon with Shrimp in a Sweet-Spicy Pecan Sauce
This Mother’s Day, treat the family and grill salmon, chicken, pork steak, scallops, or shrimp on the BBQ and serve with this savory and sweet sauce. This recipe can easily be made dairy-free.
Sundried Tomato Vinaigrette or Pesto
This intense vinaigrette adds a new flavor to summer salads. Drizzle it over a mix of summer fruits, lettuce, tomatoes and cucumber, or make it into a pesto and have it over pasta. This vinaigrette will keep for several days and is gluten-free.
About Chef Oonagh Williams
Oonagh Williams holds a culinary arts degree and spends her time cooking and educating the public on gluten- and allergy-free diets. She herself has celiac disease and food allergies. She teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her Delicious Gluten-Free Cooking e-book and connect with her on Facebook.
Research News
People with celiac disease more worried about COVID-19, study shows
A new study shows that people with celiac disease perceived they were at great risk from COVID-19. Worry about additional risk, however, dropped as the pandemic progressed and more information, primarily from celiac disease associations, became available.
Neurological and Psychological Symptoms of Celiac Disease Exposed by Go Beyond Celiac
Despite there being over 300 symptoms of celiac disease, many doctors still only focus on gastrointestinal (GI) symptoms like abdominal pain, bloating and diarrhea when diagnosing and treating a patient with celiac disease. Recent data collected from our Go Beyond Celiac Gluten Exposure Survey highlights a number of neurological and psychological symptoms patients report experiencing after eating gluten, indicating that doctors would do well to think outside the gut when working with patients with celiac disease.
Celiac disease drug that targets the immune system shows early promise
A new celiac disease drug that targets the immune system with nanoparticles looks promising in stopping damage to the intestines after ingesting gluten. The study concluded that the drug, TAK-101, prevented gluten from triggering an immune reaction in those who have celiac disease. Read our summary of the results on our website.
Read more research news on our Research News Feed
Clinical Trials
ACeD Study
Do you, or someone you know, have celiac disease? The ACeD study is looking for volunteers with celiac disease to participate in phase 1 clinical trial testing the investigational drug KAN-101.
Requirements:
- 18-70 years old
- Biopsy-confirmed celiac disease
- On gluten-free diet for at least the last 12 months
Get More Information
CeDLara Study
Still experiencing symptoms on a gluten-free diet? The CeDLara Study is currently enrolling qualified patients into their phase 3 study to assess a potential therapy for celiac disease. This study is being conducted to determine if the drug reduces symptoms of celiac disease in patients who are on a gluten-free diet. You may qualify to participate in this study if you:
- Are 18 years old or older
- Are biopsy diagnosed with celiac disease
- Are actively experiencing symptoms related to celiac disease such as abdominal pain, abdominal cramping, bloating or gas
- Have been on a gluten-free diet for at least 6 months
Learn More
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.
Learn More
See if You Qualify
Use referral code: REFBC
Solutions for Celiac Study
The Solutions for Celiac study is researching a drink-based study medication and its ability to reduce symptoms of accidental gluten exposure. Latiglutenase is a study medication designed to break down gluten into inactive pieces in the stomach to protect people with celiac disease. No uncomfortable biopsies or injections.
Locations: Chattanooga, TN | New York, NY | Chesterfield, MI | Rochester, MN
Learn More
Allergic Living Spotlight
Not Just Celiac: Life with Multiple Autoimmune Conditions
Lauren Lippincott is an extreme example of what specialists already know: if you have one autoimmune disease, such as celiac disease, there is a good chance you may have other conditions, too. Meet the people who live this reality every day.
News, Events & Updates
Beyond Celiac Celebrates Celiac Awareness Month by Raising Community Voices
This May, Beyond Celiac is joining together with the celiac disease community to amplify, empower and engage positive voices around the country to celebrate Celiac Awareness Month. We recently launched an Ambassador Program to expand local reach across the nation, encouraging those with celiac disease to share their experiences and create grassroots change in their communities.
Fempower Health Podcast featuring Beyond Celiac CEO Alice Bast
In honor of Celiac Awareness Month, Beyond Celiac CEO Alice Bast sat down with the team at Fempower Health podcast to discuss the unique ways celiac disease affects women. Listen to it wherever you listen to podcasts.
Virtual Book Reading with Author Elena Torsiello
Author Elena Torsiello will read her picture book, Willie Villie Meets Casey Kramps in Sprueville: A Book about Celiac Disease, on May 24, 2021, at 5:30 PM ET. The event is free, but you will still have to register in advance.
Beyond Celiac Town Hall—A Conversation with the National Minority Quality Forum (NMQF)
On May 27, 2021, at 1 PM ET, our Beyond Celiac Chief Scientist and Strategy Officer Salvatore Alesci, MD, PhD will sit down with Mary Stober Murray, MPH, NMQF Vice President of Collaborative Action Networks to talk about how to address disparity and diversity in celiac disease. Register now for this free event.
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our May-born community members! When your big day rolls around, consider donate to Beyond Celiac so that we can help fund new research scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years!
