#44 - 🏛️ Celiac advocates on Capitol Hill

Hey readers! 🌾 What a packed week for the celiac community. Advocates went to Capitol Hill, Massachusetts moved forward on two bills that could change how kids are screened and fed at school, and researchers published fascinating new findings on the gut microbiome's role in celiac disease risk. We've also got travel tips, a handy app, bone density guidance, and a timely reminder about why AI chatbots shouldn't be your doctor. Let's dig in!

Celiac Disease Advocates Take to Capitol Hill for the 2026 Advocacy Summit - Thirty-five advocates descended on Washington, D.C. this week, meeting with more than 60 congressional offices to push for sustained NIH and DOD research funding, expansion of the Congressional Celiac Disease Caucus, and insurance coverage for dietitian visits under the Medical Nutrition Therapy Act of 2025. Sponsored by Chugai Pharmaceutical and hosted by Children's National Hospital, the summit gave participants a full day of legislative training before their Hill meetings. - Celiac Disease Foundation

Two Massachusetts Bills Could Improve Celiac Screening and School Meal Access - The SNACCK Act aims to improve transparency around medically necessary diets in schools, while the CAPE Act would establish a pilot program for routine celiac screening in children. Both bills have advanced to committee hearings, a meaningful step toward earlier diagnoses and safer school meals across the Commonwealth. If you're a Massachusetts resident, this is worth following closely. - Celiac Disease Foundation

Gut Microbiome and Celiac Disease: New Findings on the Agathobacter Connection - The National Celiac Association's March roundup highlights a genome-wide association study that identified a HLA-DQB1 variant linked to higher levels of the beneficial gut bacterium Agathobacter, which correlates with reduced celiac disease risk. Parallel research shows that antibiotic-induced disruption of the microbiome can provoke inflammation in response to gluten in animal models. This reinforces the growing understanding that microbial diversity plays a real role in how the immune system handles gluten. - National Celiac Association

The same roundup also notes that only about two-thirds of people with celiac disease are able to maintain a strict gluten-free diet, and that persistent iron deficiency remains common even among those who do. These are practical realities that clinicians and patients should keep in mind during follow-up care.

When Should People With Celiac Disease Get a Bone Density Scan? - A Canadian study of 627 newly diagnosed adults found that low bone mineral density was present in 17.2% of participants, including 13.4% of those aged 25-34. Osteoporosis prevalence jumped sharply after age 45. A risk-calculator approach could reduce initial scans by about 67%, but would miss some clinically relevant bone loss in younger patients. Talk to your care team about what screening strategy makes sense for you. - Celiac.com

Celiac Disease Drug Pipeline: 30+ Therapies in Development - A DelveInsight analysis reports that more than 25 companies are advancing over 30 therapies across preclinical to Phase III stages, spanning enzyme replacements, biologics, and immune-modulating agents. Notable milestones include Forte Biosciences' Phase Ib results for FB102 and FDA Fast-Track designation for Teva's anti-IL-15 antibody TEV-53408. The pipeline reflects a multi-pronged approach to developing pharmacological options that could complement the gluten-free diet. - DelveInsight/GetNews

Do You Know Your GlutenID? - The GlutenID test from Targeted Genomics is an FDA-cleared, at-home genetic test that checks for HLA-DQ2 and HLA-DQ8 markers. Since nearly all celiac patients carry these genes, a negative result can effectively rule out celiac disease for life. It's especially useful for first-degree relatives and those with other autoimmune conditions. Remember, a positive result indicates susceptibility, not a diagnosis, so further testing with your doctor is still needed. - Celiac.com

Family Drama Over Gluten-Free Food Reveals a Bigger Problem - A viral Reddit post about a family conflict over gluten-free accommodations escalated to a hospitalization, underscoring how dangerous misunderstandings about medical dietary needs can be. The takeaway: clear, compassionate communication from both sides is essential. If you're heading into a family gathering, consider sharing specific guidance rather than assuming others understand what "gluten-free" truly means for celiac disease. - Celiac.com

Treating Celiac Disease in Children - A helpful overview from ECU Health reminds us that most children see symptom improvement within 2-4 weeks of removing gluten, with many achieving full resolution within six months. Family involvement, careful avoidance of hidden gluten, and annual antibody testing are key to long-term management. - ECU Health

Stanford Medicine Children's Health: Celiac Diagnosis and Treatment - Stanford's program offers a family-centered approach including telehealth, psychosocial support, school resources, and dietitian-led nutrition plans. A solid resource for parents navigating a new diagnosis. - Stanford Medicine Children's Health

Children's National Gluten-Free Diet App - This free app from Children's National Hospital consolidates ingredient safety lists, grocery shopping tips, recipes with cooking videos, a monthly podcast, and access to expert-led seminars. Worth downloading if you're looking for a one-stop educational tool. - Children's National Hospital

That's a wrap for this week! As always, we love hearing from you. Hit reply with your questions, comments, or feedback.

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