7 Things Dietitians Say to Do After a Celiac Diagnosis

It is estimated that two million people in the United States have celiac disease, with many more individuals not yet diagnosed. Because symptoms can be nonspecific and they vary between individuals, receiving a celiac disease diagnosis can be challenging and time-consuming. 

Celiac disease causes gastrointestinal distress and affects nutrient absorption. Treatment for celiac disease requires following a strict gluten-free diet. It can feel daunting to change your eating habits significantly, so we reached out to dietitians specializing in celiac disease to help guide you through this new diagnosis. Below, experts share the top seven things they recommend you do when first diagnosed with celiac disease.

What Is Celiac Disease?

Celiac disease is an autoimmune condition triggered by eating foods containing gluten. It’s a chronic condition that damages the small intestine, affecting both the digestive and immune systems. Gluten is a protein in grains like wheat, barley, rye and spelt. Many products—like pasta, couscous, bread and all-purpose flour—contain gluten. Consuming even a small amount of these gluten-containing foods can cause pain and stomach issues in people with celiac disease. 

Celiac disease is different from gluten sensitivity or wheat intolerance. Although both conditions share symptoms, gluten sensitivity does not damage the small intestine. A wheat allergy and celiac disease both cause the immune system to react, but different symptoms may occur with a wheat allergy, including difficulty breathing and itchy eyes.

Finding out you have celiac disease and learning about the condition can be stressful and confusing. Dietitians explain what you should do to help manage a new diagnosis. 

1. Make a List of Foods You Can Eat

Registered dietitian Lauren Fleck, M.S., RD, encourages people with a new celiac diagnosis to make a list of gluten-free foods they enjoy eating. As someone living with celiac disease, Fleck understands how overwhelming a new celiac disease diagnosis can feel. “Focusing on what’s allowed—like fruits, vegetables, meats, dairy, beans and naturally gluten-free grains—can shift your mindset from restriction to abundance.”

Many carbohydrates are safe to eat with celiac disease. Potatoes and grains like amaranth, quinoa and rice are naturally gluten-free. Chickpea and lentil pasta are great gluten-free alternatives to wheat pasta, and they’re also rich in protein.

2. Focus on Simplicity

Transitioning to a gluten-free diet can feel overwhelming at first. “Sticking to naturally gluten-free foods is a helpful strategy while you become more confident navigating gluten-free labeling and ingredients,” explains Lindsay Fencl, RD, CD.

Focus on simplicity by creating naturally gluten-free meals. Naturally gluten-free foods encompass most proteins (like chicken, fish, shellfish, meat, eggs and legumes), dairy, healthy fats, fruits and vegetables, including starchy vegetables like potatoes, sweet potatoes, butternut squash and corn. Create balanced meals by incorporating foods from each of these groups into meals.

3. Remember BROWS

The first step to eating with celiac disease is recognizing sources of gluten. Use the acronym BROWS to remember which grains contain gluten. The acronym BROWS stands for barley, rye, oats, wheat and spelt.

Although oats are gluten-free, they may be processed in facilities with wheat. Consider purchasing oats specifically labeled as gluten-free to avoid the risk of cross-contamination. Foods labeled gluten-free must contain less than 20 parts per million of gluten, below the threshold likely to cause symptoms in people with celiac disease.

4. Find a Dietitian

Find a dietitian who specializes in celiac disease to help you transition to a gluten-free lifestyle. “They’ll help you learn how to avoid hidden sources of gluten, start the healing process and build a safe, balanced diet,” explains Katie Schimmelpfenning, RD, LD, a sports nutrition expert and dietitian with celiac disease. 

Additionally, registered dietitians can educate you on reading nutrition labels and help you identify sneaky sources of gluten. They also provide advice on dining out and supplements. A dietitian can be a trusted resource and advocate as you learn to live with celiac disease.

5. Prepare a Gluten Sick Day Box

You’ll likely accidentally eat gluten at some point, especially during your first year of living gluten-free. Schimmelpfenning recommends preparing a gluten sick day box with tools to help you feel better when you’ve been “glutened.” As someone who has been managing celiac disease for over a decade, Schimmelpfenning stocks her gluten sick day box with a heating pad, electrolytes, peppermint tea, ginger chews, gluten-free plain crackers and gluten-free ramen.

Create your sick day kit based on your symptoms and items that provide comfort.

6. Learn Hidden Sources of Gluten and Avoid Cross-Contamination

Learning how to read labels is important. You may be surprised that many ingredients or additives contain gluten. Lisa Young, Ph.D., RD, notes, “Gluten isn’t just in bread and pasta—it can lurk in sauces, salad dressings, soups and even medications and supplements.” Malt, caramel, maltodextrin and modified food starch are some examples of sneaky sources of gluten.

Managing celiac disease requires more than just swapping gluten-containing foods for gluten-free options. Closely inspect your pantry and kitchen for potential cross-contamination. Toasters, cutting boards, baking trays and other items in your kitchen can be sources of cross-contamination. Consider purchasing a separate toaster for gluten-free products only. Implement a cleaning or labeling system to minimize the risk of cross-contamination. 

7. Pack Snacks

Keep gluten-free snacks on hand until you feel comfortable reading food labels when navigating grocery and convenience store aisles. Fleck recommends snacks like trail mix, jerky, applesauce or nuts—easy, shelf-stable options to keep in your bag for peace of mind when hunger strikes while you’re on the go. 

Other Tips for Managing Celiac Disease

Celiac disease is a lifelong condition. The tips mentioned above help when you’re first diagnosed, but other lifestyle modifications are just as essential for managing celiac disease.  

• Plan for social situations: Elyse Krawtz, M.S., RDN, recommends eating before events to prevent “hanger” that may lead to eating foods that could make you sick. Krawtz adds, “Submit food allergies at least a week or two in advance for formal or catered events. Gluten and wheat are common allergens and often chefs can accommodate with enough notice.”
• Create your support system: Family and friends can help you with eating at social occasions and dining out within a safe, gluten-free environment. Online support groups foster community and can help guide you through challenges that accompany living with celiac disease. Bess Berger, RDN, CDN, CLT, explains that support groups are places to share wins and swap recipes. 
• Use technology: Numerous apps exist to help you navigate a gluten-free lifestyle. Registered dietitian Ali McGowan, M.S., RD, LDN, recommends that individuals with celiac disease use apps to easily identify safe foods while grocery shopping. Other apps help with dining out and locating restaurants with gluten-free menus or dedicated fryers specific to gluten-free foods. 
• Have family members get tested: Celiac disease has a genetic component. If you have celiac disease, have your children, teens and other first-degree relatives tested, notes Gaby Thompson, M.S., RDN, LDN, dietitian and celiac family nutrition coach. First-degree relatives of someone with celiac disease have a one in 10 chance of developing the condition.
• Limit ultra-processed gluten-free foods: Many popular convenience foods are available gluten-free. Young advises against relying on these ultra-processed gluten-free foods. “Many packaged gluten-free products are low in fiber and high in added sugar or fat,” explains Young. She adds, “Use them occasionally, but prioritize naturally gluten-free options for overall health.” Just because a product is labeled as gluten-free does not mean it is better for you.
• Don’t rely on symptoms to know your gluten tolerance: Some people with celiac disease may not notice symptoms after consuming some gluten. However, just because you don’t experience symptoms doesn’t mean the gluten isn’t doing any harm. Krawtz explains, “Intestinal damage and production of pathogenic T cells after gluten consumption in individuals with celiac disease could still occur and increase risks, such as nutrient deficiencies, additional autoimmune diagnoses and cancers, even if symptoms are not noticeable.” It’s important that you limit your gluten intake and know that you may not notice symptoms if you’re not eating large portions.
• Shop new aisles: A celiac disease diagnosis does not have to feel like restriction or the end of eating as you know it. The key is finding gluten-free versions of foods you love. Fleck encourages people to explore the gluten-free section of the grocery store. “Trying different products can help you discover new staples while keeping your favorite meals in the mix,” she adds.

The Bottom Line

A celiac disease diagnosis can feel overwhelming at first. But recognize that communities, resources and professionals exist to guide you through this new diagnosis and subsequent lifestyle changes. Utilizing technology, focusing on foods you can eat and learning how to identify gluten sources can help you manage life with celiac disease.