Navigating a Celiac Diagnosis

Getting diagnosed with celiac disease can be extremely stressful, much like any new diagnosis. Since starting my job at Boston Children’s Hospital as a dietetic technician in clinical nutrition, I’ve realized how many valuable resources are available to help patients and parents understand this condition. Even though I was diagnosed 20 years ago, I still learn something new about this autoimmune disease every day.

One of the most helpful steps is to seek out education and support. Attending classes and joining support groups for people with celiac disease can provide valuable information as well as practical tips, such as restaurant and grocery recommendations. Apps like Find Me Gluten Free are especially useful when traveling and searching for safe dining options. It’s also helpful to keep a list of trusted gluten-free brands for times when you’re unsure where to eat. When reading ingredient labels, don’t just look for "wheat" or "gluten"—make sure products are also free from rye, oats, barley, malt, and wheat starch. Remember, gluten can be found in more than just food. Always check the ingredients in hair products, makeup, lotions, hand sanitizers, and even some drinks. And if you’re ever uncertain, don’t hesitate to search online for answers. 

Educating your family and friends about your diagnosis is equally important. This not only helps prevent accidental gluten exposure but also ensures you feel supported and included when making plans together. Always carry gluten-free snacks, especially when you’re unsure if safe options will be available. Managing celiac disease means putting your own health and well-being first. As my dad always says: DTA (don’t trust anybody)—protect your body and your health.

It’s also a great idea to work with a registered dietitian who specializes in celiac disease. They can help you create a balanced, enjoyable meal plan and answer any questions about new products or tricky situations. Exploring gluten-free cookbooks and online recipe communities can make mealtime more exciting and help you avoid falling into a rut.
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Stay vigilant with packaged foods—always double-check ingredient lists, even on familiar brands, since recipes and manufacturing processes can change. Keep up to date with reputable organizations like the Celiac Disease Foundation for new research, product recalls, and helpful community events. Above all, remember that managing celiac disease is a journey. With knowledge, support, and self-advocacy, you can live a full and healthy life.