07/08
Why Follow-Up Care Matters in Celiac Disease: It’s About More Than Just Going Gluten-Free
When you’re first diagnosed with celiac disease, your doctor probably told you to start a gluten-free diet and referred you to a dietitian (or at least we hope that is what happened). That might have felt like the finish line, but it’s just the beginning. Celiac disease is a lifelong chronic autoimmune condition and staying healthy requires more than just avoiding your typical bread and pasta. It requires regular follow-up care with a skilled celiac expert. Here’s why. Monitoring Healing and Preventing Long-Term Damage Even small amounts of gluten on a regular basis can lead to damage of your small intestine. That damage can silently cause nutritional deficiencies, fertility complications, neurological issues, or bone loss, even when you don’t feel symptoms. Follow-up visits allow your care team to: Check your blood for celiac antibodies (like tTG IgA) to see if gluten is still triggering your immune system. Track vitamin and mineral levels (like iron, vitamin D, and B12). Evaluate thyroid function. Recommend follow-up endoscopy if ongoing issues persist. Catching Other Health Issues Early Celiac disease is linked to other conditions like autoimmune thyroid disease, type 1 diabetes, and neurological issues like headaches or “brain fog.” Routine follow-ups allow your doctor to screen for and manage these conditions early before they become serious. Supporting Mental Health and Coping Skills Living with celiac disease can be emotionally exhausting. Kids and adults with celiac are at higher risk of: Anxiety and depression ADHD-like symptoms in children who don’t follow the gluten-free diet Social challenges from feeling “different” or isolated A psychologist or mental health provider on your care team can help you and your family develop strategies to cope and thrive. Making Sure the Gluten-Free Diet Is Actually Working Registered dietitians play a critical role in helping patients implement the gluten-free diet in a way that is sustainable, culturally sensitive, and nutritionally adequate. Through individual counseling or group education, dietitians support patients in developing practical skills such as recipe planning, label reading, and managing cross-contact risks, while also focusing on optimizing diet quality and the enjoyment of food. They work proactively to prevent nutrient deficiencies and reduce the risk of maladaptive or disordered eating behaviors. Additionally, dietitians can use emerging tools like Gluten Immunogenic Peptide (GIP) testing to detect accidental gluten exposure even before symptoms occur. Follow-up visits also serve as an important time to screen for food insecurity and connect patients with resources to access safe, gluten-free food. About 25% of the celiac disease community faces food insecurity, and the high cost of gluten-free products can make consistent dietary adherence especially difficult. By collaborating within an interdisciplinary care team, dietitians help ensure that the gluten-free diet effectively supports both health and quality of life. Planning for the Future From elementary school to college to adulthood, celiac disease management changes as life does. Follow-up care helps you transition smoothly through life stages, learn about new clinical trials and emerging therapies, and get involved in advocacy and community programs. Each visit is an individualized appointment that addresses where you are specifically in your celiac disease journey. Supporting the Whole Family If you have celiac disease, your family members should get screened too even if they don’t have symptoms. Children may need to be screened every year until puberty. Follow-up appointments are a critical part of care, not just for monitoring health, but also for learning how to navigate holidays, advocate in social settings, and build support systems with immediate family, friends, and colleagues. These visits offer opportunities to ask questions, share challenges, and connect with resources that help everyone affected by celiac disease thrive. Bottom Line: Follow-up care is not optional. It’s essential. Celiac disease is more than a diet. It’s a medical condition that requires lifelong support. Regular check-ins with your doctor, dietitian, and mental health provider are key to preventing complications, managing symptoms, and living your healthiest, happiest life. If it’s been a while since your last celiac check-up, make an appointment today. Your future self will thank you. Want to learn directly from leading experts about how regular follow-up care can help prevent complications and improve quality of life with celiac disease? Join our free webinar on October 15th, 2025 to get practical tips from Dr. Ritu Verma and Dr. Anne Lee on long-term management and optimizing nutrition status on the gluten-free diet. Sign up now.
