Note from Alice: Making Connections
“Connection is the energy that is created between people when they feel seen, heard, and valued.”—Brené Brown
We in the celiac disease community are connected in so many ways! Probably the biggest tie we have is our mutual desire to ease the burden and find answers for people living with celiac disease. And there are a lot of ways we can see, hear and value one another on the journey to finding treatments toward a cure by 2030.
This month, many in our community are lacing up their sneakers to participate in the Philadelphia and Virtual Step Beyond Celiac 5Ks, raising important funds for our celiac disease research efforts. We are truly running together for a cure!
To add to the fundraising excitement, a generous donor has offered up a match of $20,000 to our September Making Connections campaign. That means every dollar you donate to our research funding campaign, up to $20,000, will be matched, doubling your gift!
All this month, we’re celebrating the exciting connections made in the scientific, clinical and general celiac disease community worlds, and we are honored to be bringing people and ideas together to propel research. Thanks to donations from community members like you, we’ve been able to fund a study of the gut-brain connection to expand our understanding of brain changes and the mental health impact of gluten in those with celiac disease. We’re also accelerating research investigating the connection between early celiac disease diagnosis and quality of life. Additionally, our patient registry, Go Beyond Celiac, is connecting patients’ experiences with researchers and clinicians. And we’ve connected and partnered with Janssen’s World Without Disease Accelerator group to investigate a potential way to stop celiac disease before it develops.
Thank you for making this life-changing work possible through your connection to the cause! And thank you to our generous matching donors for giving everyone the opportunity to double the impact of their gifts to research this month! Despite a pandemic and a lack of federal funding for celiac disease research, your connection to the cause and our enthusiastic work has accelerated celiac disease research in the last year like never before.
We all look forward to eating without fear. Help us to continue to make game-changing connections by giving now to our Making Connections campaign.
Thank you!
Together for a cure,
Alice
Crustless Apple and Sausage Quiche: A Healthier Quiche Option
An easier, healthier take on the quiche that’s still tasty and filling. The original recipe comes from a nutritionist, but there’s plenty of opportunity to personalize the ingredients to your taste.
Apple Walnut Streusel Dessert Pizza
This gluten-free Apple Walnut Streusel Dessert Pizza offers all the sweet goodness of coffee cake in a unique easy-to-serve way!
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.
Supporting the Congressional Celiac Disease Caucus
The Congressional Celiac Disease Caucus launched on August 24, 2021! This bipartisan group of United States congresspeople will fight to advance legislation supporting the needs of the celiac disease community. Importantly, it will work to raise awareness of celiac disease across congressional districts.
September Step Beyond Celiac 5K
Registration is open for our September 26 Step Beyond Celiac 5K! We have a in-person for those near Philadelphia and a virtual option for anyone who wants to join.
Step Beyond Celiac 5Ks are family-friendly events that raise money to support Beyond Celiac research efforts. All registrants will get gluten-free goodies and a t-shirt, so long as you sign up before September 10.
When: September 26, 2021
Where: Wherever you are or FDR Park, Philadelphia
What: Running 3.1 miles closer to a cure for celiac disease!
Not in Philly? No problem! You can still register for the virtual version and run wherever you are on September 26!
Donate Now to Making Connections to Double Your Impact!
Contribute to Beyond Celiac research efforts today as we connect scientists advancing the field with the funding they critically need. This September, a generous donor has offered up a match of raising $20,000. That means every dollar you donate will be doubled up to $20,000 this month! Beyond Celiac is making critical connections in the scientific, clinical and general celiac disease community worlds. Thank you for making this work possible through your connection to the cause!
Noticias sobre investigación
Monoclonal antibody investigated as celiac disease treatment
An international group of researchers are investigating a monoclonal antibody that has the potential to treat celiac disease by stopping the activation of cells that identify gluten as an invader.
Can celiac disease be detected in saliva?
The mouth and the intestine share characteristics that might make a saliva test for celiac disease the first step in diagnosis, a new study from Spain suggests.
Italian researchers hypothesize about COVID-19 and those predisposed to celiac disease
Italian researchers hypothesize that COVID-19 could have implications for those who are genetically at risk for celiac disease.
Ensayos clínicos
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
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
Allergic Living Spotlight
Celiac Disease in Children or Teens: The Sneaky Signs
“Edyth Moldow was supposed to look small in her dance school’s production of the ballet Cinderella. But her mom’s breath caught when she realized just how tiny and pale her daughter looked compared to the other children leaping and twirling across the stage.” The symptoms of celiac disease can look different in young patients than in adults. Read up on the sneaky signs.
News, Events & Updates
New Bill Would Require Products to Disclose Gluten-Containing Grains
A team of Representatives and Senators reintroduced the Food Labeling Modernization Act of 2021 (FLMA) to the House and the Senate. Currently, wheat is the only gluten-containing grain that is required to be disclosed on food and beverage labels. If the legislation passes, barley and rye ingredients would also need to be listed. If passed, this would greatly reduce the guesswork currently required for people to safely eat gluten-free.
Vote for Beyond Celiac in the Guided Buyer Awards!
Beyond Celiac has been nominated in three categories for the 2022 Guided Buyer Gluten-Free Awards: Best Non-Profit, Best Online Resource and Best Podcast. Voting ends before September 30, so be sure to vote before then!
The company Giant Microbes sells stuffed plushies of diseases, viruses, bacterias, and body parts, including one of celiac disease. The plushie starts as a damaged, unhealthy villi, but turn it inside out and it becomes a healthy, pink villi, healed by the gluten-free diet. The best part? A portion of every celiac disease plushie purchase is donated to us here at Beyond Celiac so we can continue our research initiatives!
New Episode of our Podcast Celiac Straight Talk
In this episode, Reach Beyond Celiac Ambassadors Bill, Lauren, Hayden and Clayton discuss finding love when you have celiac disease. Check out “Episode 33: ‘Can You Brush Your Teeth?’ Dating with Celiac Disease.”
Making Connections: Step Beyond Celiac 5K
How can you take care of your body, mind, and soul all at once? Sign up for our September Step Beyond Celiac 5K of course!
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our September-born community members! When your big day rolls around, consider raising money for 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!