Summer brings longer, sunnier days filled with pool parties, barbecues, and bonfire nights. However, these summer delights can also bring unique challenges for those living with celiac disease. Navigating social gatherings, traveling, and enjoying all that summer has to offer can become a daunting task when surrounded by individuals who may not fully understand the implications of a gluten-free diet or grasp the impact celiac disease can have on one’s daily life. Results from our recent national survey with the Harris Poll highlight some of these challenges. The study revealed that 32% of parents with a child under 18 mistakenly believe that it is fine for a child with celiac disease to eat food served at birthday parties, snacks after their sports team game, and other special occasion situations, even if it is not gluten-free. Alarmingly, only 14% are aware that many children with celiac disease may not exhibit any stomach issues or symptoms at all.
On a hopeful note, Amy Ratner, Beyond Celiac Director of Scientific Affairs, reported this month on two clinical trial presentations from Digestive Disease Week (DDW) showing positive results for celiac disease treatment. The KAN-101 drug is designed to deliver proteins in an immune tolerance pathway in the liver. A separate study shared that ZED1227 prevented intestinal damage caused by gluten.
Even with promising studies like these, most people are still unaware of the potential for drug therapies to treat celiac disease. We not only believe in the potential, we are actively making progress toward it!
Beyond Celiac Investments, our pioneering celiac disease venture philanthropy program, is already celebrating a significant milestone, having secured half its ambitious $2 million goal for 2024.
We’ve vetted top-tier biopharmaceutical companies for our initial investments. These companies genuinely grasp the celiac disease community’s urgent needs, and they are poised to connect the dots between groundbreaking scientific discoveries and the pharmaceutical market, ensuring that those living with celiac disease gain access to safe and effective treatments.
Years ago, the idea of treatments for daunting diseases like leukemia, lymphoma, or cystic fibrosis seemed far-fetched. However, when these fields tapped into the power of venture philanthropy, treatments accelerated onto the market. Embracing the proven venture philanthropy strategy, Beyond Celiac is accelerating celiac disease research efforts and committing to introducing as many life-changing therapies for celiac disease into the market as quickly as possible. This proven investment strategy is the key to fulfilling the enormous unaddressed need for medicinal therapies to support individuals living with celiac disease.
With promising research in the pipeline and transformative projects like BCI ramping up, community support is crucial for securing a treatment by 2030. Working together, we will create a world where pool parties and summer travel are equally safe for individuals with celiac disease.
In the meantime, let’s savor the summer! Here are some of my favorite resources to help keep celiac safe from the barbeque to summer camp:
Celiac disease and the gluten-free diet can feel daunting, but you’re never alone. Through education and support, those around you can become allies in your journey. Beyond Celiac is here for you every step of the way, from providing daily living resources to driving forward research toward a cure.
Last month’s matching gift opportunity brought an additional $56,000 to our mission, a testament to the power of community support. I invite you to join this effort in July and consider setting up a recurring gift to amplify our progress together.
We are entering an exciting time on our journey toward treatments for celiac disease. We are on a mission, and with your support, a world where celiac disease is no longer an obstacle to enjoying the simple pleasures of summer is within reach!
Together for a cure,
Alice, CEO
When the summer heat hits, try this cool, gluten-free chicken salad. It combines protein, vegetables and fruit with a tasty, savory sauce, and can be eaten on its own or used as a filling for a tasty, on-the-go gluten-free sandwich.
This recipe was provided by our friends at Gluten-Free Palate.
A special gluten-free dessert for any summer party, especially garnished with lots of lovely summer fruits, strawberries, raspberries, nectarines or mangoes, as well as whipped cream!
QUESTION: In a 1939 study on 73 children with celiac disease, how many survived at least three years after being diagnosed?
ANSWER: 17 patients survived. Of 73 patients, 26 had already died at the time of the study and only 17 were still alive three years after diagnosis. At the time of the study, gluten had not yet been identified as the culprit in celiac disease, a discovery made by Willem-Karl Dicke shortly after World War II.
Although the gluten-free diet is not a perfect solution, it is quite literally a lifesaver for millions of people today. Read more about celiac disease and improving mortality rates.
The connection between celiac disease and obesity explored at DDW
Obesity was more common in those with celiac disease compared to those without celiac disease, analysis of a large national database of health information found.
Increased amounts of gluten in a gluten challenge for those on a gluten-free diet may be needed for accurate celiac disease blood tests done as part of diagnosis.
More than half of children with celiac disease did not get recommended blood test follow-ups in a study that used artificial intelligence to scan electronic health records.
Read more research news on our Research News Feed
This survey intends to provide greater clarity on the experiences that people with celiac disease have when exposed to gluten, including the top symptoms with a negative impact and how symptoms and gluten exposure negatively impact quality of life.
If you’re signed up for Go Beyond Celiac, we invite you to log in and complete this survey. If you haven’t already joined, please become a member of Go Beyond Celiac and start sharing your story today.
Learn more about Go Beyond Celiac
“I’m a physician assistant in family practice. My brother was diagnosed with celiac disease six months earlier, and I read on UpToDate [a clinician support website] that celiac disease has been linked to recurrent miscarriages. I started a gluten-free diet and my bloating, gas, and constipation went away. A couple months after starting this diet, I became pregnant again.
A biopsy of my small intestine was consistent with celiac disease. I did not really suspect celiac disease, but my husband asked me to try a gluten-free diet after the two miscarriages, and I relented, since my brother was recently diagnosed.”
FDA to Bimbo Bakeries: Stop Use of ‘Misleading’ Allergen Claims
In late June, the US FDA warned a major commercial baker to stop using labels that list sesame and nuts as ingredients in breads, when they are not in fact present. In a warning letter, the federal agency told Bimbo Bakeries USA that such product labels are false and misleading.
The Beyond Celiac Coalition, a precompetitive partnership of multidisciplinary stakeholders involved in the development of potential treatments for celiac disease, met recently with the FDA to discuss a collaborative approach to making therapeutic trials for celiac disease more patient-centric while maintaining scientific rigor.
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.
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