A recent Go Beyond Celiac Insights survey reveals the social and emotional toll of managing a gluten-free diet
By Bailey Arman
Results from a Beyond Celiac survey suggest those who manage a gluten-free diet (GFD) find it mentally draining and socially isolating. More than half of respondents report feeling isolated or excluded in social settings, and the majority of respondents report sacrificing attending social events to avoid gluten.
So Why Be Gluten-Free?
For those with celiac disease or non-celiac gluten sensitivity (NCGS), following a strict GFD is the only way to manage their medical condition. There is no other treatment. Despite how restrictive and isolating a GFD can be, it’s also the only way to prevent symptoms, like diarrhea, brain fog, and fatigue, and, in the case of celiac disease, long-term damage to the intestine.
A number of potential pharmaceutical treatments for celiac disease are in development, but until one is approved, the GFD is the sole option.
So how do people managing the GFD feel about it?
How the Survey Was Done
At the end of 2025, Beyond Celiac invited anyone with celiac disease or NCGS to take an online survey about how the GFD affects their day-to-day life. Respondents included people with celiac disease, NCGS, and primary food providers of someone with one of these conditions, such as a parent of a child with celiac disease.
The survey took about 15 minutes to complete and was open for almost a month between November and December 2025.
The margin of error of results is +/- 4%.
Survey Results—Anxiety and Avoidance Common
Of 718 respondents:
- 71% avoid eating out at restaurants to reduce the risk of accidentally ingesting gluten
- 67% agree or strongly agree that they feel anxious about accidental exposure to gluten
- 66% deliberately pass on social gatherings or parties to avoid gluten
- 55% sacrifice visiting friends and family for meals to avoid gluten
- 55% agree or strongly agree that they feel “tired” from the constant mental load of thinking about gluten
- 54% agree or strongly agree that they feel isolated or excluded in social settings
“I worry about the emotional implications of my daughter feeling like she always has to ‘miss out’ on food at social events,” wrote one respondent. “I worry a lot during travel that we will be stuck in a situation that [sic] she won’t be able to find food to eat. I worry that I will mistakenly buy the gluten-filled version of a product. I worry about her managing this on her own as an adult—particularly in college, dating, first jobs, etc.”
Another respondent shared, “It’s hard to be a teenager who can’t do the things everyone else can!”
These respondents’ experiences reflect themes across all the results: people managing a GFD also manage feelings of social exclusion and isolation, worry about whether or not there will be safe food outside the home, and, of course, fear of inadvertent gluten exposure.
Because eating is a daily necessity, respondents may need to cope with these feelings every day, even every meal. It’s no wonder more than half reported feeling tired from the mental load of thinking about gluten.
Ideas to Relieve Pressure
Managing a GFD can be stressful and isolating for anyone, but it’s the only option for some patients until we have a treatment. If you’re struggling with the emotional and mental burden of a GFD, below are a few tips from our Ambassadors, volunteers who also manage the gluten-free diet every day, to relieve some of that pressure.
- “I take care of myself by keeping protein bars in all of my bags and purses in case I am in a situation where there is no gluten-free food available.”
- “For restaurants, I will call ahead of time to ask questions, plus have a back-up restaurant in case I am uncomfortable when I arrive.”
- “It’s helpful for friends and family to take an interest in learning about celiac disease and the nuances of gluten-free food labeling. Ask questions, read information from reputable sources, and understand that people with celiac and their caregivers have different thresholds of risk. Withhold judgment, and instead, take an interest in learning why each person makes the decisions that they do. Most importantly, recognize that these decisions happen all day, every day, and they can become exhausting. What people with celiac and their caregivers need more than anything is your support and kindness.”
- “Some ways I take care of myself as a teenager living with celiac disease are by always making sure I bring snacks for myself when going somewhere and by making gluten-free fun (food reviews and making day trips to restaurants!)”
- “Limiting processed foods and sticking to naturally gluten-free foods.”
- “Give myself grace! I do everything I can, but getting glutened isn’t always my fault.”
If you or a loved one is experiencing intense feelings of fear or sadness, we encourage you to reach out to a medical professional. Additional support from a dietitian, gastroenterologist, or therapist may be helpful.
Hope on the Horizon
The gluten-free diet is the only way to manage celiac disease, a life-long autoimmune condition. Unfortunately, those on the gluten-free diet can feel socially isolated, anxious, and hypervigilant. Beyond Celiac believes they deserve better—they deserve options. We are committed to supporting research and initiatives on alternatives, including pharmaceutical interventions.
Disclaimer
The survey was commissioned by NIMA Partners and developed in collaboration with RedSky Strategy. This article, however, was not commissioned by NIMA Partners or RedSky Strategy, and was not reviewed by them prior to publication.