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Letter from Alice: When One Door Closes…
Dear Beyond Celiac Community,
I’ve heard from many of you that the news that 9 Meters Biopharma discontinued its Phase 3 trial for larazotide acetate has been greatly disappointing. My response to everyone is the same—don’t be discouraged. Don’t give up on the possibility we will eventually have better options than the gluten-free diet alone. Don’t give up on a cure.
As I’ve said before, scientific discovery is often a slow process, with successes and failures both building on each other. Celiac disease is woefully underfunded federally, which only slows the process further. As with any disease, there will always be setbacks and triumphs as we move toward effective therapies. There are ways to speed up this progress, which Beyond Celiac has been committed to and working diligently toward each and every day: we’re recruiting for trials, we’re filling in funding gaps toward life-changing research, and we’re collecting much-needed research data in our registry.
Treatments and a cure are on the horizon. And while this trial has been discontinued, 9 Meters says it plans to continue to analyze existing data over the coming weeks to determine if some celiac disease symptoms might benefit from treatment with larazotide.
We also have to remember that when one door closes, others open. While this trial was the only celiac disease treatment in Phase 3, a number of other drugs are currently under study in earlier phases of investigation. In fact, recently two companies with drugs to treat celiac disease in Phase 1 (KAN-101) and Phase 2 (Latiglutenase) of clinical trials reported positive study results and are moving forward with enthusiasm. Additionally, there are a number of other potential treatments at various stages in the development pipeline.
At Beyond Celiac, we remain committed to our mission of advancing research and supporting scientists even in the face of a closing door. We remain resolute in driving research to find treatment and a cure for celiac disease by 2030.
Perhaps most important to mention is the patients who have volunteered for trials. They are the true heroes of this work toward a cure. I want to encourage others with celiac disease to volunteer and not let the outcome of this trial dissuade you. Be reassured that drug developers take rigorous steps needed to minimize risk and keep volunteers safe—and remember that research cannot progress without patient participation. We at Beyond Celiac will continue to advocate for the trials to be geographically accessible and with as few barriers as possible for study inclusion.
To move research forward, we all need to be ready to help. With our outstanding community and our Go Beyond Celiac registry, we be able to eat without fear and live life to the fullest by 2030.
Together for a cure,
—Alice Bast
Classic baked potatoes are transformed with crispy Jones Dairy Farm Dry Aged Bacon, roasted cherry tomatoes and shredded lettuce.
Recipe provided courtesy of Jonathan at The Candid Appetite.
Most pasta salads are made with mayonnaise, but this gluten-free pasta salad uses yogurt to cut down on calories and cholesterol.
Stay cool in the summer heat with these fruit-packed ice pops. Frozen yogurt never tasted so good!
July Town Hall: Related Conditions Q&A with Stefano Guandalini, MD
This Q&A session, happening on July 28 at 3 PM ET, will feature renowned celiac disease expert Dr. Guandalini, professor emeritus at the University of Chicago and the founder of the University of Chicago Celiac Disease Center. Dr. Guandalini will focus on answering questions about conditions and co-morbidities that are commonly seen alongside celiac disease—you can submit your questions when you sign up for the event.
Celebrate a Summer Beyond Celiac
Celiac Awareness Month may be over, but the fun doesn’t have to end! As part of our new Summer Beyond Celiac initiative, we encourage you to host events to raise awareness (and maybe even funds!) for celiac disease. Try hosting a viewing party, bake sale, cocktail hour, bingo night, or anything else you can think of! Trailblazing community members have already hosted such events as a scavenger hunt, jiu jitsu raffle, school walk, and painting sale. Join in before the summer ends!
Noticias sobre investigación
Black people with biopsy-confirmed celiac disease often have negative blood test results
In a new registry of celiac disease patients at the University of Alabama at Birmingham, Black people with biopsy confirmed celiac disease were more likely than non-Hispanic whites to had have negative results on the most commonly used diagnostic blood test.
Phase 3 study of drug to treat celiac disease discontinued
The Phase 3 clinical trial investigating larazotide acetate as a treatment for celiac disease was discontinued today by 9 Meters Biopharma, Inc.
Highlighting Dr. Amelie Therrien, Study Doctor for Solutions for Celiac in Boston, MA
It can be hard to imagine the specific place you would have your study visits and the study team you would interact with. To provide a more complete picture of clinical trial participation, we met with Dr. Amelie Therrien, a gastroenterologist at Beth Israel Deaconess Medical Center (BIDMC) in Boston.
Ensayos clínicos
PROACTIVE Celiac Study
This is a phase 2 clinical trial 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. No gluten challenge.
Requirements:
• 18-70 years old
• Biopsy-confirmed celiac disease
• On a gluten-free diet for at least the last 12 months
• Still experiencing celiac disease symptoms
Allergic Living Spotlight
Allergy-Friendly Camp: Kids Find Their Community, Then Pay It Forward
“Growing up with multiple food allergies, my son, Alex Moreno says he often felt singled out and alone. Though my husband and I did everything we could to make sure he was always safe and included, food allergies are tough on kids. That’s when we discovered a summer camp called Camp Blue Spruce, which operates free of the top nine allergens and gluten. It opened a new world to Alex, and he found something he desperately needed – community.”
News, Events & Updates
The Best Gluten-Free Drinks for Summer
Sun out, fun out! It’s the time of year that many of us are looking for refreshing summertime beverages, both of the adult and non-alcoholic variety. Try making these recipes for our staff’s favorite summertime drinks!
Canadian Class Chooses to Raise Money for Celiac
How celiac disease education in the classroom galvanized students to raise money for celiac disease research!
In this series of articles, we explore the ways that celiac disease affects quality of life and the self-care strategies that help our Reach Beyond Celiac Ambassadors cope. In this introductory post, Ambassador Christina Heiser explains why self-care is an important part of managing celiac disease and which self-care practices she finds effective.
Beyond Celiac and Takeda Partner on Diversity and Healthcare Equity Initiative
Beyond Celiac is proud to announce our new multi-year partnership with Takeda to identify and reduce disparities in celiac disease.
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 July-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.