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Letter from Alice: Our Brains Deserve Better
Celiac disease affects so much of our daily lives. Take Ava, for example, who was just a child when she was diagnosed with this serious autoimmune disease. Even on the gluten-free diet, she still felt sick, and frequently missed school because of it. “All of my symptoms were internal and invisible, so it was difficult for people to understand why I was more absent than I had been before my diagnosis.” When she was at school, she couldn’t “participate in fun events like bake sales and surprise pizza days.”
Why do we keep feeling ill even after diagnosed? Unfortunately, 73% of our community report experiencing gluten exposure every year—36% as often as 1-5 times a month. While 84% reported gastrointestinal symptoms, 56% reported neurological symptoms, and 40% psychological. As our Chief Science and Strategy Officer Salvo Alesci, MD recently said, “neuropsychological impairment in people with celiac disease can be as or more debilitating than their gastrointestinal symptoms, and it has been overlooked for too long.”
We should not have to live our lives feeling sick day in and day out. We should be able to eat without fear. This is why we are funding a study to investigate the long-term effects of celiac disease and gluten sensitivity on brain function, depression and anxiety, and quality of life. With the help of brain scans, a research team in the United Kingdom previously found that gluten adversely affects brain function and mental health in those with celiac disease and gluten sensitivity. Now we want to know how to stop these effects.
Led by the same research team, this project will investigate how effectively the gluten-free diet treats these problems, as well as more precisely scrutinize how gluten affects the brain. We are confident that this life-changing work will raise awareness among physicians of non-GI symptoms of celiac disease and help advance urgently needed therapies for these non-GI issues.
You can help kids like Ava by giving today to fund this important research into the long-term effects of celiac disease and gluten sensitivity on brain function, depression, and quality of life.
Together for a cure,
—Alice Bast
Butternut, Apple and Chicken Sausage Hash
You’ll love this sweet and savory butternut squash hash with chicken sausage and apples. Made with certified gluten-free sausages from Jones Dairy Farm, this recipe is ideal for an autumn weekend brunch or breakfast for dinner!
Pumpkin Chocolate Chip Muffins
Pumpkin lovers rejoice! This is the perfect recipe to celebrate autumnal flavors. This recipe also earned an honorable mention in the 2021 Beyond Celiac Gluten-Free Holiday Recipe Contest.
November Town Hall: An Evening with SSCD Leaders
Join us on November 3 at 8 PM ET as we discuss The Society for the Study of Celiac Disease (SSCD) with leaders Benjamin Lebwohl, MD & Ritu Verma, MD.
The SSCD is a professional organization of physicians, nurses, dietitians, and allied health professionals in the United States, Canada, and Mexico who specialize in the treatment of celiac disease and other gluten-related disorders.
At this virtual event, Dr. Lebwohl will cover the role of genetic testing in celiac disease diagnosis and Dr. Verma will discuss the ongoing debate on whether or not to skip the biopsy when diagnosing celiac disease. The discussion will close with audience Q&A.
Thank You to our Step Beyond Celiac 5K Participants!
Thank You to our Step Beyond Celiac 5K Participants! Hurricane Ian may have washed out our Philadelphia race, but that doesn’t mean we didn’t have fun fundraising! And what’s better, we raised over $126,000 for celiac disease research because of your efforts. Thank you so much to everyone who registered, fundraised, volunteered, and spread the word. We couldn’t do what we do without you. We’d also like to thank our Step Beyond Celiac 5K lead sponsors Takeda and Independence Blue Cross (IBX)!
We hope to see you IN PERSON at the next race!
Noticias sobre investigación
Norwegian screening finds three-quarters of those with celiac disease undiagnosed
A wide-spread screening study estimates that nearly 1.5 percent of the residents of one Norwegian county have celiac disease, and before the screening, 75 percent didn’t realize it.
73% of celiac disease patients still exposed to gluten every year
A recent survey of the celiac disease community by Beyond Celiac reveals the ongoing challenges those with the disease are facing, including the shocking statistic that nearly 73% still have exposure to gluten each year, resulting in symptoms.
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
How Food Allergies Can Trigger a Serious Picky Eating Disorder
Avoidant-restrictive food intake disorder (ARFID) is a form of extreme picky eating in which people will only eat a very select, limited number of foods. While ordinary picky eating in a child can be annoying, ARFID is serious since it can cause growth delays and nutritional deficiencies. It also interferes with many aspects of daily life, such as family meals, traveling, and social gatherings. Read this article to learn more about ARFID and how you or a loved on can find relief.
News, Events & Updates
Halloween is fast approaching, so review our list of gluten-free candy to prepare to enjoy it safely. As a rule, always read the labels before trying a sweet treat, because ingredients and facilities can change from year to year. When in doubt, contact the manufacturer directly with questions.
Your life with celiac disease: 2022 community survey results
This year, we hosted another community survey to learn more about you and your experiences with living with celiac disease and non-celiac gluten sensitivity. Check out the preliminary results in this article!
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 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.