#41 - 🎓 She changed college dining forever

Hey readers! 👋

Welcome back to another week of celiac news and insights. This week we're covering a lot of ground, from a mom who changed how entire universities feed students with celiac disease, to new research showing that living gluten-free doesn't always mean feeling great, and a fascinating look at whether "gluten sensitivity" is as common as people think. Grab your favorite GF snack and let's get into it.

She Spoke Up for Students with Celiac Disease and College Campuses Began to Change - Courtney Andelman's twin daughters both have celiac disease, and when they headed off to UC Davis and Cal Poly, the family quickly discovered how unprepared campus dining was for students who need safe, gluten-free meals. Rather than accept the status quo, Andelman worked directly with dining staff, administrators, and the Celiac Disease Foundation to create real change, including a pre-ordering meal program during orientation, dedicated gluten-free stations, and expanded safe menu options. - Celiac Disease Foundation

Her work has now contributed to the Foundation's national recommendations for higher-education institutions. If you have a college-bound teen with celiac disease, this story is both encouraging and a practical roadmap for what to ask for.

New Research Highlights the Hidden Burden of Celiac Disease - A study published in the Journal of Clinical Gastroenterology, using data from the All of Us research program, found that people with celiac disease report significant fatigue, functional limitations, and lower overall health perceptions even when strictly following a gluten-free diet. Perhaps most telling, many patients felt dismissed by their healthcare providers despite having more specialist visits than the general population. - Celiac Disease Foundation

This is a reminder that celiac disease management goes well beyond diet. If you've ever felt unheard at a doctor's appointment, you're not alone, and this data supports the need for better clinician education.

Research Suggests Non-Celiac Gluten Sensitivity is Uncommon - A Lancet literature review of 58 studies found that only 16 to 30 percent of people who report gluten intolerance actually have symptoms triggered by gluten. Many reactions may instead be driven by FODMAP sensitivity, IBS, or the nocebo effect. The review calls for standardized diagnostic approaches and notes that cognitive-behavioral therapy could help those whose symptoms are expectation-driven. - Beyond Celiac

This is important context for the celiac community. It underscores why proper diagnosis matters and why a blanket gluten-free diet isn't the right answer for everyone experiencing digestive discomfort.

Eleven Genetic Variants Affect Gut Microbiome - Two large-scale studies with over 28,000 participants identified 11 genetic regions influencing gut microbiome composition, up from just two previously known. Several of these loci are linked to gluten intolerance risk, suggesting that genetic predispositions may shape disease through alterations in gut bacteria. - Today's Dietitian

Maltese Researchers Find New Celiac Disease Gene - Scientists in Malta identified a rare CD59 gene variant that, when combined with HLA-DQ2/DQ8, predisposes individuals to celiac disease. The variant was found in only one family out of 99 tested, but it adds another piece to the complex genetic puzzle. - Times of Malta

Only 1 in 10 High-Risk Children Are Being Tested for Celiac Disease - A study by Beyond Celiac and Weill Cornell Medicine analyzing nearly 224,000 insurance claims found stark screening gaps. Non-Hispanic Black children were tested at less than 7 percent, compared to about 12 percent for non-Hispanic White children. The authors advocate for either universal screening or targeted strategies to close these disparities. - Beyond Celiac

Talking to Kids About Celiac Disease - Ep 351 - Registered Dietitian Nicole Byrom joins A Canadian Celiac Podcast to share age-appropriate communication strategies for discussing celiac disease with children aged 5 to 10, 10 to 13, and 14 and up. The episode also highlights the Kids Teach Kids program and International Celiac Disease Awareness Day on May 16th. - A Canadian Celiac Blog

Raising Our Celiac Kids (ROCK) Program - The National Celiac Association's ROCK program offers downloadable school packets, nutrition guidance, mental health resources, peer mentorship through Celiac Chat, and week-by-week guidance for the first month after diagnosis. A valuable bookmark for any parent navigating a new diagnosis. - National Celiac Association

Celiac-Safe School Lunch Hacks - Celiac Canada shares practical tips for packing safe, appealing school lunches. Worth a visit alongside their related posts on cross-contamination in the kitchen. - Canadian Celiac Association

Can You Eat Wheat in Europe? The Truth About "European Bread" - Host Jenny Finke and RD Molly Winsten tackle the popular question of why some people seem to tolerate European wheat but not American wheat. They discuss differences in wheat varieties, the role of long sourdough fermentation, glyphosate use, and the very real risks of testing wheat abroad if you have celiac disease. Science and nuance over oversimplification. - Good For You Gluten Free

How Social Media Algorithms Are Fueling Gluten Anxiety - Celiac.com examines how TikTok's dramatic videos, Reddit's fear-reinforcing discussion loops, and Instagram's clean-eating culture can amplify anxiety around gluten, sometimes pushing people toward overly restrictive diets or away from medical guidance. Practical advice includes curating your feeds, following reputable health professionals, and setting time limits on health content. - Celiac.com

Speaking of Reddit, a post in r/Celiac this week described a dentist who denied celiac disease was real and laughed at the patient. The community rallied with support and advice to report the provider. A good reminder to advocate for yourself and find practitioners who respect your diagnosis.

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