Why Community Support Matters for Living with Celiac Disease
August 27, 2026
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Written by: Melissa Secord, Executive Director August 27, 2026
After nearly 10 years with Celiac Canada, I have learned that a celiac disease diagnosis is only the beginning of the health journey.
The diagnosis may happen in a doctor’s office, but the treatment is lived everywhere else: in grocery stores, school cafeterias, restaurants, workplaces, sports facilities, family gatherings and while travelling.
Healthcare professionals can prescribe a strict gluten-free diet. But families must translate that prescription into thousands of everyday decisions about food safety, nutrition, affordability, availability and inclusion. Often this journey starts alone and without clear directions.
The most recently published Canadian research validates something we have observed for years: people need more than medical instructions. They need trusted information, practical guidance and connections with others who understand how to live gluten-free every day.
The most recently published Canadian study, Parental perspectives concerning gluten-free food insecurity in households with children with coeliac disease: take away messages for policy makers, examined the experiences of parents raising children with celiac disease. The study asked parents about the barriers they face, the resources that help them and the policies they believe are needed to address gluten-free food insecurity.
More than 90% identified the high cost of gluten-free food as a major barrier. Approximately 94% pointed to the lack of effective gluten-free food policies. Many also reported difficulty routinely accessing nutrition professionals with specific expertise in the gluten-free diet.
These findings reinforce that families are often left to navigate a medically required diet in a food system, and a broader support system, that was not designed with them in mind.
The study also offers an important insight into how families respond to these gaps.
Celiac-focused social media and community networks were identified as important sources of practical information. Parents used these connections to exchange information about gluten-free products, affordability, availability, restaurants and financial supports. They specifically identified local Celiac Canada groups as helpful resources for finding gluten-free brands and restaurants.
The importance of support extended beyond online information. Parents identified support from family members and educators as one of the most important factors helping children adhere to the gluten-free diet.
This tells us that community is not simply a social benefit. For people with celiac disease, community can have a practical role in helping them understand and maintain their treatment.
Peer support is valuable across many chronic health conditions. It has an especially practical role in celiac disease because the treatment is food-based, lifelong, locally variable and largely managed outside the healthcare system.
Unlike a standardized medication obtained from a pharmacy, the gluten-free diet continually changes. Products are reformulated. Labels change. Safe options differ by location. Restaurants have varying levels of knowledge about gluten cross-contact. A product found in one Canadian community may be unavailable or unaffordable in another.
Local community members help one another answer practical questions that may be difficult for a healthcare professional to answer:
People are not simply exchanging recipes. They are collectively navigating a complex and fragmented food environment.
The newly published parental perspectives study builds on an earlier paper from the same research program, Gluten-Free Food Insecurity is associated with reduced Diet Quality and ultra-processed food intake in youth with Celiac Disease, which examined food insecurity and diet quality among children and youth with celiac disease.
Nearly one in three participating households experienced gluten-free food insecurity, and more than 97% said that high gluten-free food costs influenced their purchasing decisions.
The children were generally maintaining a safe gluten-free diet. However, almost all had diets classified as either poor or needing improvement. Children experiencing the most severe gluten-free food insecurity had lower overall diet quality.
This is an important distinction: a family can work incredibly hard to keep a child safely gluten-free while still struggling to provide a diet that is sufficiently healthy, varied and affordable.
Community can help families find options and share strategies, but community support cannot, and should not, be expected to solve systemic affordability and access problems on its own.
Parents participating in the newer study were clear that broader policy change is also needed. More than three-quarters supported improved refundable tax assistance for families. Parents also identified other measures including education in schools and formal recognition of the burden created by celiac disease.
Canada’s current medical expense tax system is cumbersome, requires extensive receipt tracking and provides limited help to families with little or no taxable income.
Families should not have to rely on luck, geography or personal income to access their child’s Medical Nutrition Therapy. Community support can help people navigate the system, while advocacy works to change the system. Both are necessary.
This research validates why Celiac Canada’s role extends across the health journey. We help connect:
Our role is not to replace physicians or registered dietitians. It is to help bridge the distance between clinical advice and everyday life.
A dietitian may explain how to create a nutritionally balanced gluten-free diet. Celiac Canada and its community networks can help a family find the trusted resources, products, local knowledge and peer support that make following that guidance possible.
We can be the consistent partner connecting the different parts of a person’s celiac health journey.
Food is about more than nutrition. It is central to culture, celebrations, friendship and family life.
Children and adults with celiac disease can feel excluded when there is nothing safe for them to eat or when others do not understand why even a crumb matters.
Community helps turn information into confidence. It is where someone discovers that another family has navigated the same school situation, found an affordable product or experienced the same fear of making a mistake. It is where people can ask questions without first having to explain why celiac disease must be taken seriously.
Community provides practical knowledge, but it also provides reassurance, connection and hope.
After nearly 10 years of listening to people affected by celiac disease, this latest study feels deeply validating. It puts research behind something our community has long understood: no one should have to navigate this lifelong treatment alone.
Wherever you are in your celiac journey, I want you to know:
We’ve got you.
You’ve got this.
You have found your community.
Connect with Celiac Canada for trusted information, practical resources and a community that understands.
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