The Weight of Being Misunderstood
“Health” and “mental health” are often treated as separate, when they’re deeply connected—as anyone with coeliac disease knows. Living with a chronic illness in a world that often misunderstands and dismisses concerns can feel isolating. When someone feels seen, heard, and accepted, their illness doesn’t feel like such a heavy burden to carry alone.
I often reflect on this in my work as a counsellor. Living with coeliac disease, neurodivergence, dyslexia, and mental illness has been exhausting and has multiple challenges. I’ve spent years feeling misunderstood - even by people close to me. I write this article for anyone walking a similar path: you are not alone. And to those supporting someone with hidden struggles - I hope you choose compassion.
You may not realise it, but people facing these challenges are often incredibly resilient. They have had to develop unique ways to stay safe and function in a world not built with them in mind - often facing stigma, stereotypes, and biases that affect even the simplest daily activities.
The Gut–Brain Connection
Coeliac disease affects more than digestion. Coeliac NZ refers to strong links with mental health conditions like depression and anxiety - often triggered by nutrient deficiencies or inflammation. Neurologist Dr. Norman Latov highlights symptoms like brain fog and migraines as direct consequences of coeliac disease.
As someone who’s neurodivergent, I’ve long experienced sensory overwhelm and food aversions - amplified by undiagnosed digestive issues. Even trace amounts of gluten impact me. After exposure, I lose focus, my thoughts spiral, and the struggle becomes harder to mask.
Many people with ADHD and ASD experience digestive issues like stomach pain, bloating, or constipation. According to ADHD New Zealand, up to 35% of girls and 24% of boys with ADHD report physical symptoms, including gut discomfort. International research supports this, with studies showing higher rates of irritable bowel syndrome and other gastrointestinal symptoms in neurodivergent individuals compared to neurotypical peers (ADHD New Zealand, n.d.; Wang et al., 2022).
Hiding Pain, Seeking Validation.
Growing up, I was a people-pleaser. I blamed myself when I got sick. My family didn’t always understand hidden sources of gluten, and awareness was limited. The symptoms - digestive issues, constipation, diarrhoea, bloating, nausea, fatigue, brain fog, joint pain, migraines, rashes - followed me into adulthood. I wasn’t lazy or unfocused—I was unwell. But no one saw that.
I wasn’t diagnosed until my mid-20s. By then, I was mentally and physically depleted. At times, I was so fatigued that I slept when I should have been wide awake. During periods of my early 20s, I was unemployed because my mental health was so bad.
Working as a chef meant daily exposure to gluten. I loved the creativity, but the pressure, flour in the air, exposure to an abusive environment, and long hours eroded my health. Leaving hospitality brought relief, but I still miss the joy of cooking.
The Social Pressure of "Just Eat It"
Navigating social settings is one of the hardest parts. Work functions were stressful. I was often excluded - even when everyone else’s food was covered. People placed gluten and gluten-free items on the same plate without thinking. A crumb from someone’s hand was enough to make me sick.
There were moments with friends that turned into unexpected drama, which heightened my stress level. Like the time I started eating an ice cream from a multi-pack – mid bite, a friend read the box and saw gluten listed in the ingredients. Cue instant panic. Had I just glutened myself?! After a frantic inspection, we realized the individual wrapper - thankfully still intact - was for a different flavour than the one listed on the box, and it had its own gluten-free label. Crisis averted. Breathe.
At family BBQs, I politely ask that my food be cooked separately or on one of those magical grease-proof BBQ sheets - my knight in armour foil - because, you know, cross-contamination is my arch-nemesis.
Cue the classic replies:
“We can clean the BBQ really well!”
“Sure—maybe with industrial-grade cleaner and a miracle.”
Or:
“We don’t really cook gluten on here anyway.”
“Except for the mystery sauce cooked last week”
As someone with coeliac disease, I’ve basically got gluten radar, and it’s always going off - because it is hidden in a lot of foods. When my requests are brushed off, I’m the one who ends up sick.
So yes, I’ll bring the foil, and maybe even a small forcefield next time.
Supportive family members make all the difference. But when I’m met with resistance or dismissiveness, it reinforces my fears, and my anxiety is heightened. And if I don’t speak up, I risk getting glutened. My voice might sound nagging, but it is for a good reason.
The Overload of Everyday Life
Shopping is another battlefield. Ingredients change without notice. Trusted items suddenly contain gluten. The layout of the store shifts and overwhelms my neurodivergent brain. Do I risk a “may contain” item? Or stick to the expensive certified gluten-free options? Mistakes can derail weeks of progress. Even medication can be tricky - some don’t clearly state if they’re gluten-free, and I’ve had to do the legwork myself, while battling anxiety. I once panicked over “Mannitol,” which is highly processed, thinking I’d been glutened.
The financial cost is steep - especially for those on benefits. Add in prescriptions, doctor visits, and mental health meds, and it becomes unaffordable. Getting help from WINZ can feel like another exhausting fight.
Having worked in early childhood education, I’ve seen how coeliac kids are vulnerable in shared food environments. Without strict protocols, cross-contamination risks their health, development, and learning. A gluten-free space isn’t just a preference - it’s a necessity for the safety of those children.
Burnout and Finding My Voice
As a neurodivergent person, burnout is an ever-present threat. Chronic stress, shame, and having to justify my needs in every environment compound that risk.
Fatigue is more than tiredness - it’s a complete shutdown. As research suggests from Skjellerudsveen et al. (2019), Ng & Bowman (2010); Grimstad et al., (2015) van Hoogmoed et al., (2010), chronic exhaustion is a key issue in inflammatory diseases like coeliac disease. Impairing both physical and mental functioning. Burnout and chronic fatigue taught me how crucial it is to slow down and prioritize well-being.
Working in healthcare has taught me the importance of individualised care. It’s not just about the diagnosis. During recovery, it is important that a person feels seen, heard, and safe. This can help to identify and strengthen the support needed for that individual. I’ve cried, gone silent to avoid judgment, and carried the weight of shame. But I’ve also learned the power of saying no, setting boundaries, and listening to my body.
This Isn’t Just a Diet - It’s Survival
People still say, “You’re being fussy,” or, “A little gluten won’t hurt.” But it does. Coeliac disease, left unmanaged, can cause permanent damage, autoimmune issues - even cancer. One crumb can mean weeks of pain, neurological symptoms, and gastrointestinal shutdown.
Stereotypes make it harder for those diagnosed to eat safely, spreading misinformation like: “It’s fine to use the same fryer,” or “I’m okay with traces of gluten.”
Then, from the hospitality staff, you get the “How sensitive are you?”
Then there is the problem for someone who is asymptomatic and unaware that they are causing damage to themselves until consequences later down the line.
If you can’t accommodate, be honest, let us bring our own food. What matters most is respect, safety, and dignity.
Listen Without Judgment
Advocating for your health isn’t selfish - it’s survival. Coeliac disease isn’t just a diet. Living with it - alongside mental health challenges - is part detective work, part resilience. But it doesn’t have to be lonely.
With understanding and compassion, we can build spaces that are safer, kinder, and more inclusive for everyone.
This article was written from a lived experience perspective. If you or someone you know is struggling with mental or physical health, please seek support from a healthcare professional.
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