A Personal Story of Coeliac Disease and Misunderstanding
My coeliac disease is truly the bane of my existence. It dictates so much of my life, has endangered it numerous times and caused agony I genuinely would not wish on my worst enemy. So, imagine my rage when my comfort podcast, Call Her Daddy, suddenly turned into an impromptu debate about whether gluten allergies are actually “real.”
During the episode, Alex Cooper asked comedian Robby Hoffman for her opinion on people being allergic to gluten. Her response? “No it can’t be done. It can’t be done. Is it real? Or they think they are?” The segment was framed as a “hot takes” discussion, with Cooper asking Hoffman whether various scenarios qualified as “great or jail”, including prompts like “people who sit on the couch in their outside clothes.”
To be clear: I love a hot take. Life would be deeply boring if we all liked the same things. Audiobooks don’t count as reading. Un-ghosting someone is deeply embarrassing (you made a choice, now stick with it). Gone Girl is the perfect breakup movie. Robert Pattinson should not have been cast as Edward in Twilight.
But autoimmune diseases are not hot takes. You cannot “debate” the legitimacy of a medical condition simply because you personally do not understand it. I was so annoyed I literally could not finish the episode. I had to sit with it for several days before I even wanted to address how wrong it was.
So, a brief education feels necessary here — particularly for Robby and Alex. Because coeliac disease is not some wellness fad invented by influencers who discovered almond flour in 2014. It is an autoimmune condition affecting approximately 1% of the global population, where the body mistakenly treats gluten — a protein found in wheat, barley and rye — as a threat. In response, the immune system attacks the lining of the small intestine, interfering with nutrient absorption and triggering a range of symptoms.
Yes, bloating, stomach pain, constipation and diarrhoea are common. But coeliac disease can also present through fatigue, anaemia, weakened bones, neurological symptoms and debilitating brain fog. People with coeliac disease have double the risk of developing coronary artery disease and four times the risk of developing small bowel cancers. The condition has also been associated with an increased risk of small intestine cancer, non-Hodgkin lymphoma and other autoimmune disorders, with research suggesting the likelihood of developing additional autoimmune conditions increases the later coeliac disease is diagnosed.
According to the Celiac Disease Foundation, “the treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer.” Left untreated, coeliac disease can lead to early-onset osteoporosis or osteopenia, gallbladder dysfunction, heart disease, infertility and miscarriage, iron deficiency anaemia, liver failure, malnutrition, pancreatic insufficiency and neurological symptoms ranging from migraines and ADHD to seizures, dementia and neuropathy.
Research also shows untreated coeliac disease can severely affect emotions, cognition and behaviour. Anxiety and depression are incredibly common prior to diagnosis, and sometimes even after.
I was around 14 when I first realised how profoundly debilitating my anxiety had become. It grew so severe that I missed an entire semester of school in Year 9 and rarely left the house. Then, in Year 10, I changed schools and rapidly began losing weight. Already naturally thin, the weight loss was not welcome (despite the occasional snide comment from people saying they’d “heard of worse problems”). The fatigue, pain and nausea I felt constantly made life feel intolerable at times.
Because my symptoms were repeatedly dismissed as anxiety, I started believing it was normal. Did everybody just go through life in a certain degree of pain all the time? Eventually, I underwent a body composition scan, which revealed alarmingly low muscle mass and body fat, indicating I was not absorbing nutrients properly from the food I was eating. Multiple blood tests, an endoscopy and colonoscopy later — surprise! — the answer was coeliac disease.
My then-boyfriend’s sister was coeliac. I distinctly remember having absolutely no idea what that actually meant beyond vaguely thinking she was a “fussy eater”, while my he would roll his eyes whenever she mentioned being gluten free. That ignorance — and the strange irritation people often project onto allergies and autoimmune conditions they do not understand — is precisely what leads to conversations where the legitimacy of gluten-related illnesses becomes something people feel entitled to debate on popular podcasts.
Ironically, I think my ex-boyfriend and I broke up not long after my diagnosis, although that was not the reason (I think). Because I went undiagnosed, even if luckily only for a few years, I developed gallbladder dysfunction that caused large gallstones so excruciatingly painful I eventually had my gallbladder removed at age 17.
For my fellow people pleasers, being coeliac is already tormenting enough. It makes so many of us feel like a burden to the people around us, which is punishment enough without also having to defend whether the condition is actually real and its effects. Whereas nut allergies are often treated with the severity they deserve, gluten is not.
The “gluten free tax” is also painfully real. People with coeliac disease routinely pay more for food that is smaller (and sadder). There is the convenience tax of never being able to casually “grab and go” a sandwich or pastry like the general population. There is the social cost of constantly feeling anxious at restaurants. And then there is the financial cost of accidentally being glutened and needing to take time off work because your body is in active revolt.
Then there are specialist appointments, medical complications and the emotional exhaustion of having to advocate for yourself endlessly.
A few years after my diagnosis, after only being accidentally glutened a handful of times, I ate a fake meat alternative and went into anaphylaxis, my throat closing before I could even fully comprehend what was happening. Luckily, I was working retail at the time and there just so happened to be a doctor in one of the fitting rooms. A few EpiPens later, I was okay — albeit extremely shaken. My allergy had gotten significantly worse.
Since then, I have used those pens more times than I can count. Such is my sensitivity now that even a crumb of gluten could kill me, which is wild when you think about it. I take EpiPens everywhere. It is exhausting and frightening and, if I think about it too long, it makes me miserable. Although I am an extremely privileged, happy and otherwise relatively healthy person, there is still sadness in knowing this is my reality forever — and that there is a real possibility I could one day pass this reality onto my future children (coeliac disease is hereditary, although neither my parents nor siblings have it.)
People also vastly underestimate where gluten hides and the level of vigilance required to avoid it. At times, it borders on insanity. It can be in shampoo (looking at you, Aveeno). Oat milk (which has been put in my tea despite asking for cow’s milk). Medications. Sauces. Dressings. Chocolate. Alcohol. Sweets. Envelopes and stamps. Some cafes even add pancake batter to scrambled eggs to make them fluffier.
It would shock you, the places it hides, like some evil little parasite burrowing itself into anything delicious or useful.
I recently returned from an overseas trip where the luxury hotel I was staying at assured me my gluten free meal was “100% gluten free”. Thankfully, another person on the trip noticed the drizzle on the butter looked suspiciously like marmite. When we asked the waitress, she confidently assured us it was gluten free. When I insisted she double-check with the kitchen, they realised it was not.
I have hundreds of examples like this. Hundreds of near misses.
Hoffman later added in the episode: “I want to see the outbreak. I want to pick up a [bread] roll. We’re having rolls tonight. Just a bag of rolls. Butter it up. And let’s see. Is it Hitch? It better look like Hitch. It better look like Will Smith in Hitch. If it’s not Will Smith blowing up in Hitch, I don’t know.”
She continued, “when we were kids everybody was allergic to peanuts. I never hear that anymore because it’s not cool anymore.”
Or maybe, according to the Murdoch Children’s Research Institute, peanut allergies are becoming less common primarily because medical guidelines have shifted to recommend the early introduction of allergens in infancy. Rather than avoiding peanuts, feeding infants safe forms of peanuts early trains the immune system to tolerate them, resulting in a 43% decrease in peanut allergy diagnoses. And the reason coeliac diagnoses are on the rise? Improved awareness of the disease, alongside more accurate and less invasive diagnostic testing.
Even without anaphylaxis, coeliac disease alone is no less detrimental to a person’s health. Many diseases, particularly chronic and autoimmune conditions, are invisible. Someone may appear healthy while privately dealing with pain, fatigue, malnutrition, neurological symptoms or emotional distress.
Mocking or speaking authoritatively on health conditions you know little about is cruel because illnesses are not trends, personality quirks or moral failings. They are often deeply complex medical realities that affect every aspect of a person’s life.
What relieved me most was the overwhelming common sense in the comments underneath the podcast, alongside the general disbelief at both Hoffman and Cooper’s remarks.
“Happy celiac awareness month y’all. Except for, I guess, the awareness part. I don’t eat gluten because I have an autoimmune disease and like not dying of colon cancer. Not because it’s trendy or cool.”
Another wrote: “My mother almost died from complications of undiagnosed celiac disease. She formed a fistula in her intestines which then leaked bile into her body cavities and she became septic. She spent a week in the ICU in a medically induced coma while she received very strong antibiotics. I spent lots of my childhood and young adult years with debilitating stomach pain before I was finally diagnosed, only after my mother was diagnosed and almost died. It might seem like a new disease, but it’s been around for a long time. It’s only just now being talked about and was often overlooked and underdiagnosed.”
These conversations do not exist in a vacuum. Platforming misinformation around health conditions is dangerous because many people already feel embarrassed, burdensome or disbelieved when discussing their allergies and medical conditions.
There is no need to intensify that stigma further.
And maybe you might have read this all and thought, it’s not that deep. Well, for me, it actually is, because my life is well and truly on the line. And if you had an allergy that was severely misunderstood, that could kill you, make you extremely sick and give you lifelong health complications, you would probably think it was deep too.
Compassion and intellectual humility will always be more valuable than uninformed certainty.
