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Understanding and supporting loved ones with celiac disease: a guide from 2 gastroenterologists

Donna Powell, MD and Renee M. Marchioni Beery, MD
Conditions
October 16, 2024
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Living with celiac disease can be a profound challenge, not just for those diagnosed but also for their friends and family. A strict gluten-free lifestyle is essential, and providing thoughtful, informed support can significantly improve the quality of life for someone with celiac disease. September 13 is National Celiac Disease Awareness Day, and as gastroenterologists, we want to share how you can be a source of strength and comfort in your loved one’s journey. Here’s how you can help:

Start with knowledge: understanding celiac disease

The cornerstone of effective support is understanding what celiac disease entails. This autoimmune disorder is triggered by the ingestion of gluten, a protein found in wheat, barley, and rye. When someone with celiac disease consumes gluten, their immune system reacts by damaging the small intestine, leading to a variety of symptoms. These can range from gastrointestinal discomfort like bloating and diarrhea to skin rashes, fatigue, and even nutrient deficiencies.

By familiarizing yourself with the symptoms and challenges of celiac disease, you’ll be better equipped to offer meaningful support. This includes understanding what a gluten-free diet involves and the critical importance of avoiding cross-contamination.

Create a gluten-free safe haven

If you share a home or spend a significant amount of time with someone who has celiac disease, consider creating a gluten-free sanctuary in the kitchen. This involves designating specific areas for gluten-free food preparation and investing in separate utensils, appliances, and cookware exclusively for gluten-free use. Simple steps like clearly labeling gluten-free items and regularly cleaning surfaces can go a long way in preventing accidental gluten exposure.

While setting up a gluten-free kitchen may require an initial investment of time and resources, it’s a tangible way to show you care. By reducing the risk of cross-contamination, you’re not just protecting their health—you’re also providing peace of mind, which is invaluable.

Be a supportive eating companion

Dining out can be a daunting experience for those with celiac disease. The fear of cross-contamination and the need to inquire about food preparation can make meals stressful. You can help alleviate this anxiety by researching gluten-free-friendly restaurants ahead of time and ensuring they take the necessary precautions.

When dining together, be patient and supportive as your loved one asks questions about ingredients and preparation methods. If necessary, step in to help verify that the meal meets their dietary restrictions. You might even consider joining them in eating gluten-free during shared meals to foster solidarity. Your understanding and patience can turn what might be a stressful experience into an enjoyable one.

Embrace the gluten-free journey together

Supporting someone with celiac disease isn’t just about making accommodations—it’s about embracing the journey together. Use this as an opportunity to explore new ways of cooking and eating. Instead of focusing on dietary limitations, view the gluten-free lifestyle as a chance to discover new ingredients and flavors. Experiment with gluten-free recipes and try alternative grains like quinoa, rice, and gluten-free oats.

Even if you don’t have to follow a gluten-free diet yourself, making these small changes during shared meals can help your loved one feel supported and less isolated. It’s a wonderful way to show that you’re with them every step of the way.

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Offer emotional support

Adjusting to a gluten-free lifestyle can be emotionally taxing. Your loved one may experience frustration, sadness, or even feelings of isolation as they navigate these changes. Being a supportive listener and acknowledging their emotions is crucial. Avoid minimizing their concerns or suggesting they can occasionally “cheat” on their diet—such actions can undermine their commitment and lead to unnecessary health problems.

Supporting someone with celiac disease involves a combination of practical steps and emotional support. By understanding their condition, creating safe spaces, being thoughtful when dining out, and offering ongoing encouragement, you can make a significant difference in their quality of life. Your efforts will help them feel more confident, supported, and empowered to live a healthy and fulfilling life despite the challenges posed by celiac disease.

Donna Powell and Renee M. Marchioni Beery are gastroenterologists.

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