Subscribe
Letter from Alice: Children and a Cure are Our Future—But We Also Need Help Now
If you’re a parent or a caregiver, you understand that your kids will never be old enough for you to stop worrying about them. Your concerns for their health, happiness, and wellbeing can’t be outgrown. I’m both a mom and now a grandmother of two, and while I’m the only one diagnosed with celiac disease, I worry about whether my eldest daughter and grandchildren will one day get diagnosed with this serious disease. This is part of why the entire Beyond Celiac team, including myself, work tirelessly to accelerate research toward treatments and a cure.
Because if there is a cure for celiac disease, there is one less worry for all the caregivers out there. Imagine a world where celiac disease is curable – one less worry for a new mom, one less concern for a father when their child goes on a field trip, one less burden for a grandparent as their grandchild heads to college, and one less stressor for parents on a budget trying to afford gluten-free food for their children.
However, we also acknowledge the importance of providing help to those suffering from celiac disease today.
Recently, Dylan Dreyer of the 3rd Hour of TODAY shared her son Calvin’s celiac disease diagnosis, which turned their world upside down. Realizing the challenges that many face in transitioning to a gluten-free diet without their means and support, Dylan has joined forces with Beyond Celiac to help spread awareness and understanding.
We are thrilled that Dylan is now actively involved in Beyond Celiac initiatives aimed at facilitating future research while providing support, community, and fun in the present. She was a keynote speaker at our inaugural Community Summit, a day of education, community building, and eating without fear. Next, she will be emceeing our Step Beyond Celiac 5K in Boston, another family-friendly event that offers resources, raises funds, and provides delicious gluten-free treats for all ages. We are so grateful for Dylan’s involvement, especially leveraging her large following to help our community!
At Beyond Celiac, we’re dedicated to making life easier for those affected by celiac disease, especially parents and newly diagnosed individuals. Part of our mission is to provide comprehensive support, resources, and hope for a gluten-free future. That’s why we offer an informative website packed with free resources designed to assist parents and those who have recently received a celiac disease diagnosis. We provide free toolkits, guides, recipes, and articles to help navigate this challenging journey.
But you don’t have to be a celebrity or someone with a giant following to get involved and make a difference. We invite anyone with a gluten-related disorder to join our vibrant social media community, where we share the latest news, research updates, clinical trials, and valuable resources related to celiac disease. Join us in connecting with others who understand your experiences and challenges. Share our posts and help spread awareness within your personal sphere of influence.
Further, consider joining our Ambassador program, which puts boots on the ground to provide local support and build a strong, interconnected community. Our Ambassadors are passionate about helping individuals and families affected by celiac disease.
At Beyond Celiac, we’re committed to making life better today while working tirelessly to create a future free from the worries of celiac disease. Join us on this journey toward a world where celiac disease is no longer a concern, and families can thrive without restrictions. Together, we can make a difference and one day take a big worry away from future parents and children alike.
Together for a cure,
Alice Bast
CEO
Pumpkin Cake with Cream Cheese Swirls
A gluten-free, pumpkin-y delight! Customize it with spooky decorations or a sprinkling of candy around the outside and you’ll have the perfect dessert for any Halloween party. It would also work well for a Thanksgiving treat!
Missing perfectly glazed orange chicken from your local takeout place? Yearn no more! We have a perfect, gluten-free substitution recipe, provided by our friends at the Gluten-Free Palate.
Step with Us—Boston and Virtual 5Ks!
Step Beyond Celiac 5K races, presented by our sponsor Takeda, are an incredible opportunity to get outside, meet people like you, and raise awareness for celiac disease. Funds raised will be used to support Beyond Celiac research efforts to improve the quality of life for individuals with celiac disease. Plus, gluten-free snacks will be available at the in-person events!
Philadelphia: September 9
Boston: October 14
Virtual: Anytime this fall
Noticias sobre investigación
LILY Study launches to test monoclonal antibody treatment for celiac disease
This new phase 1 trial does not include a gluten challenge.
In kids with celiac disease with no symptoms, tests still find evidence of gluten in their diets
A recent study found that children who had detectable gluten in urine and stool samples did not have symptoms, backing up earlier evidence that symptoms are not reliable indicators of gluten getting into the gluten-free diet.
Voices of Celiac: Bionqua’s Story
“[Celiac disease is] a daily challenge but I prefer to be happy, not sick, and to live a healthy life.
I am a doctor, a pharmacist specifically, and I went into the medical field so that I could help myself learn about the body and figure out what was happening to me. I try to help others as much as I can with the knowledge I have gained.”
Get Involved in Research
ILLUMINATE-062 Study
Participants are needed for the ILLUMINATE-062 Study, which is looking at the safety and effectiveness of an investigational medication designed to break down gluten in the stomach compared with placebo in those with celiac disease who are on a gluten-free diet. The study will evaluate how well the investigational medication reduces celiac-related symptoms and intestinal damage due to gluten exposure.
Participants who have been diagnosed with celiac, which was confirmed by a biopsy, and have been on a gluten-free diet for at least 12 months are needed. Study-related care is provided at no cost and a travel stipend may be provided.
Allergic Living Spotlight
Celiac’s Evolution: The Mind-Boggling Rise of Non-Gut Symptoms
There’s a fast-growing group of patients who don’t turn up at the doctor’s office with so-called classic symptoms of celiac disease, like diarrhea and nutrient deficiency. There is a big evolution – or more like revolution – underway in our understanding of the signs of celiac disease.
News, Events & Updates
This October, stay safe while enjoying the plethora of sweets by reviewing our gluten-free candy list. Remember, always read the label!
Beyond Celiac and the Beyond Celiac Community Summit were featured on the 3rd Hour of TODAY.
Beyond Celiac and the Society for the Study of Celiac Disease award Shayna Coburn, PhD, of Children’s National Hospital, the 2023 Early Career Research Award.
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our October-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.