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Overview
To shape our project in a way that truly responds to the needs of those affected, we sought to understand life with celiac disease from multiple perspectives.
We conducted interviews with community members, academic experts, organizations like Cœliaque Québec, and gluten-free businesses. We are grateful for their time and contributions to our project.
This combination of voices gave us both a deep, personal understanding of individual struggles and a broader, evidence-based perspective on common challenges.
We then supplemented these insights with an anonymous survey, allowing us to capture trends across a wider group of 52 respondents.
Interviews: Hearing from the Celiac and Gluten intolerant community
| Name / Background | Key Points |
|---|---|
| Marc Antoine Morin / Chron’s Disease, gluten intolerance |
Experienced severe digestive issues early on, limiting diet to very basic foods. Holistic approaches, including supplements and probiotics, improved symptom management. Cross-contamination in restaurants is a major concern, leading some to eat beforehand or skip eating out altogether. Gluten-free products are often processed and low on nutritional value, leading to reliance on homemade recipes. |
| Emma Hitchmond / Celiac |
Adjusting to a gluten-free diet was difficult, but preventing any gluten exposure is crucial due to potential long-lasting effects. Cross-contamination can happen when you least expect it, even in student residences or shared kitchens, so careful precautions are always needed. Celiac is often misunderstood by people. Food labeling is very helpful for identifying safe products, though standards vary between countries. |
Major Takeaways
- Cross-contamination is a major concern, especially when going out to eat, where many “gluten-free” options are compromised by poor precautions or staff negligence. Social and emotional challenges are common, including anxiety about eating out, fear of accidental gluten exposure, and the impact of dietary restrictions on social interactions.
- Gluten-free alternatives can be nutritionally deficient, often containing refined starches and fewer essential nutrients. Food labeling is an important tool for identifying safe products, but its reliability and standards can vary between countries, so consumers need to stay attentive.
- Public understanding is limited; Celiac disease is frequently mistaken for a food preference rather than recognized as a serious autoimmune condition requiring strict adherence to a gluten-free diet.
- While holistic lifestyle adjustments (such as supplements) may help with symptom management in some conditions, celiac disease remains an autoimmune disorder that requires a strict gluten-free diet.
- Many institutions do not provide adequate advocacy or support for students with celiac disease, highlighting the need for stronger and more consistent measures.
Interviews: Learning from Experts, Associations, and Industry
| Name / Background | Key Points |
|---|---|
| Amélie Therrien / Associate Professor, Harvard Medical School, Gastroenterologist associated with Cœliaque Québec, also Celiac |
Diagnosis delay: antibody and biopsy testing complicated; adults often misdiagnosed. Gluten-free product labels are not always reliable; there are standards (ppm metric) but sensitivity varies by patient. Treatments beyond a gluten-free diet are challenging because safely inducing a gluten reaction is difficult and comorbidities can complicate outcomes. Research into other treatments includes enzyme therapies (Latiglutenase, TAK062), probiotics, and HLA blockers. |
| Christine Desjardins / Nutritionist and dietician at Cœliaque Québec |
Cœliaque Québec: Founded in 1983; supports French-speaking communities in Quebec, Ontario, and New Brunswick. Pushes governments to improve access and financial support for gluten-free products. Partners with the food industry to ensure compliance with gluten-free standards. Sponsors and collaborates on research projects. |
| Marc-Olivier / Owner of Vegateau, a vegan and gluten-free bakery in Montreal |
Gluten-free and vegan baking requires constant trial and error and consulting scientific literature due to limited training resources. Strict precautions are needed; logos/certifications are not enough, requiring direct supplier verification. Public perception can be a barrier, with “gluten-free & vegan” labels sometimes deterring customers and texture differences raising skepticism. Many people, including trained chefs, underestimate the challenges of gluten-free baking and the seriousness of celiac disease. |
Major Takeaways
- Celiac is still often misdiagnosed or diagnosed late; testing is complex and symptoms overlap with other conditions.
- While a gluten-free diet remains the cornerstone of treatment, therapies beyond it are limited. Promising approaches are being researched, but none are regulatory-approved, and safely testing new treatments is challenging due to the risk of gluten reactions and potential comorbidities.
- Bakeries and restaurants that cater to celiac customers must go beyond labels and invest in controlled environments, especially since patient sensitivity varies, and labeling inconsistencies remain a risk.
- Raising awareness of the real struggles of Celiac disease can reduce stigma and skepticism, while advocacy organizations like Cœliaque Québec play a crucial role in shaping policy, ensuring industry compliance, and providing community support.
Broad outreach: Our Survey
Objective
The primary objective of this survey was to gather insights directly from individuals affected by Celiac Disease, while also welcoming responses from people with other gluten-related disorders. The goal was to understand their lived experiences, including:
- Diagnosis journey and symptom profiles.
- Daily management challenges and cross-contamination anxiety.
- Spending habits related to a gluten-free diet.
- Perceptions and potential demand for supplemental aids, specifically a probiotic designed for gluten digestion.
Sampling and Recruitment
A sampling method was employed to target the specific population of interest.
Recruitment Channels:
- Digital Outreach: The survey was initially advertised on the Toast Busters Instagram account.
- Partnership with Key Organization: A partnership was established with Cœliaque Québec (Fondation Québécoise de la Maladie Coeliaque), which promoted the survey in its newsletter in early October, helping the survey reach 52 people!
Data Collection
- Informed Consent: Participants were asked to consent to publish anonymized analytics.
- Voluntary Response Sampling: Participation was entirely voluntary.
- Ongoing Data Collection: The survey is still live and actively collecting responses.
Data collection was administered online using Google Forms, allowing for anonymous, convenient, and widespread participation.
Survey Methodology
- Mixed-method, cross-sectional design to capture community experiences and attitudes.
- Bilingual: English and French for broad accessibility.
- Structured and Unstructured Questions:
- Multiple-choice and multi-select questions for quantitative data.
- Likert scales to measure symptom severity, anxiety, and comfort levels.
- Open-ended text fields to collect qualitative data on trusted resources and personal recommendations.
- Logical Flow: Sections included Eligibility & Diagnosis, Symptoms & Exposure, Daily Living, Supplements, and Community & Resources for coherent user experience.
Toast-Busters Celiac Questionnaire
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Interpretation of Results of the Survey
Concern with gluten cross-contamination
Figure 3 shows that most participants reported anxiety levels in the 5–7 range, indicating moderate to high anxiety. This reflects not only the practical burden of constantly monitoring food but also the psychological toll of living with uncertainty. Anxiety may also vary depending on the severity and diversity of symptoms experienced—while some individuals may face primarily gastrointestinal symptoms, others deal with systemic symptoms that can be more disruptive and harder to anticipate. The variation in symptom presentation means that even minor cross-contamination can carry very different consequences from person to person, amplifying the sense of vigilance and stress. These results therefore highlight not only practical challenges but also broader mental health impacts associated with managing gluten exposure.
Trust of probiotics
The results indicate that people are generally open to using probiotics in cases of accidental cross-contamination, but not for intentional gluten consumption. This distinction reflects the nature of celiac disease as an autoimmune condition, where even trace amounts of gluten can trigger harmful immune responses. It also reinforces the goal of our project, which is specifically focused on addressing the risks of cross-contamination.
What do people look for in probiotics?
When considering probiotics, people tend to prioritize affordability, effectiveness in reducing immune reactions, protection of gut health, and clear evidence supporting these benefits. These insights are essential for guiding the next steps of our project, particularly in designing a probiotic that aligns with the celiac community’s needs and expectations.
Time Onset of Symptoms
Understanding how quickly symptoms appear after exposure can help guide management strategies and improve patient awareness. Our survey showed that most respondents experienced symptoms within 0–3 hours of exposure, with this timeframe reported by 57.7% of participants (see Figure 6). However, around 20% reported varied or uncertain timing of symptom onset, highlighting the importance of accounting for individual differences when monitoring reactions.