The unsuspecting cancer patient had no idea that inappropriate dietary advice from a “wellbeing expert” would worsen rather than improve his health in the wake of bowel surgery.
The irony is that this 63-year-old man, who had had a neuroendocrine tumour removed from his small intestine in 2024, was led to an inadequately qualified nutrition provider through his private health insurance company. Its advertising of a wellbeing service that included nutritional therapy caught his eye. Struggling with frequent and urgent bowel movements after being discharged from hospital, he thought he might benefit from some advice around his eating.
The impact of that advice was presented as a case study at a recent seminar in Dublin on Decoding Nutrition Information: Separating Fact from Fiction. Hosted by SafeFood, an all-Ireland, Government-funded organisation, the event involved dietitians and nutritionists from North and South.
Surgical dietitian Úna Donnelly outlined the story of patient X, whom she had met at St Vincent’s Private Hospital, Dublin, less than a year after his first surgery. After recurrence of the neuroendocrine tumour, he had needed a second resectioning of his small bowel, but this time came into surgery significantly malnourished.
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“What was really staggering for me is, in those 11 months, he had 20 kilos weight loss [more than 3st], which was 22 per cent of his body weight. So he was quite malnourished then, obviously, coming into hospital, heading into a second surgery, heading into another oncology diagnosis.”
Donnelly soon pieced together why. In addition to the patient experiencing post-surgical symptoms that needed medical management, the “wellness guru” had recommended he cut out all sorts of foods from his diet. This was on the basis of an IgG blood test, which “basically tests antibodies in your immune system that are associated with specific foods”, she said.
In this context, “there’s currently no evidence to support IgG blood tests. It’s not recommended as a diagnostic tool and it is not recommended to introduce any dietary restrictions based on the results of these”. Yet, patient X was given a list of things he was supposedly allergic to and should stop eating: gluten, dairy, potatoes, caffeine, cashew nuts, beer and wine. Foods he was advised to add included bone broth, optibac probiotic, sea salt, glutamine powder and manuka honey.
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“This individual was quite confident to give him dietary advice, even though these are really not symptoms that can be managed with diet. It has to be managed with medication, and that’s definitely something where the kind of medical insight of a qualified dietitian comes into play,” said Donnelly. “There’s no evidence that any of these supplements or taking any of these foods out of your diet are going to make any difference to the symptoms of a neuroendocrine tumour, or support any sort of recovery post-op.”
The advice did nothing for the patient’s bowels problems, compounded his social isolation, and instilled fear of the very foods he needed to build himself up. She estimated his diet was meeting only about 35 per cent of his energy and protein requirements.
Influencers that have been inside healthcare systems use that insider identity to distance themselves from what they call mainstream medicine and to claim authority
— Elise Hutchinson, FoodFacts
Everybody eats and everybody has an opinion about the food they consume. But nutrition science is a complex subject, and it requires years of study to be qualified to advise other people on what and how to eat.
However, only “dietitian” is a protected professional term in Ireland, and practitioners must register with Coru, the regulatory body for health and social-care professionals. However, much to the dismay of degree-qualified, professional nutritionists, anybody who has done a short, online course, or none at all, can call themselves a nutritionist. The NutriPD project (nutripd.eu), based in Atlantic Technological University, Galway, is advocating for change in this.
Traditionally, people with little or no nutritional expertise, but who nevertheless liked to tell others what they should eat, did it one-to-one, among family and friends. Then social media came on the scene.
“This gave a megaphone to everyone and anyone, and gave them the power to be able to spread misinformation rapidly,” said the founder of the Freedom Food Alliance, Robbie Locke, at the seminar. Now AI technologies, which were trained on everything found on the internet – both science and all the false information there too – creates “misinformation on an industrial scale”. This spreads through chatbots, social media and deep fakes.
“People are turning to these tools because they’re quick fixes,” said Locke. Yet, such a path can lead to serious health complications. Locke cited the example documented in a US medical journal earlier this year of a 60-year-old man who consulted ChatGPT about removing sodium chloride, ie table salt, from his diet. As a result, he started taking bromide salt, developed the rare condition of bromism, and had to be sectioned and treated for psychosis.
Locke and Elise Hutchinson created FoodFacts (foodfacts.org) last February to help demystify the food system and debunk diet myths. She addressed the seminar about the psychology of misinformation, stressing the need to understand why false information sticks and is hard to counter with facts.
Only 2 per cent of TikTok nutrition videos are accurate when measured against nutritional guidelines, according to a study by Dublin City University and MyFitness Pal published last year. Yet 57 per cent of millennial and Gen Z TikTok users surveyed said they are influenced by, or frequently adopt, nutrition trends they find on the platform. Almost a third, 31 per cent, say they have experienced an adverse effect from “fad diet” trends.
Hutchinson said it is the packaging of “facts” that influences public reasoning. “Nutrition-based information rarely begins with a complete lie. What it begins with really is doubt.”
What if the experts are not telling the truth?
“You’ve got a popular influencer who’s saying that the keto diet [low carb, high fat] is attacked because it works. Then the narrative shifts because that doubt finds a purpose. What if the truth has been intentionally hidden?” What if there is a big-pharma-driven agenda to keep people sick…
“For anyone who’s feeling exhausted, struggling with symptoms, or feels disconnected from the system, they’ll find that relatable,” Hutchinson suggested. “It’s worth noting as well that there’s quite a few influencers that have been inside healthcare systems, and so they use that insider identity to distance themselves from what they call mainstream medicine and to claim authority.”
In this context of very high confusion, where people do not know who to believe, personal anecdotes from random people start to take meaning and to trump scientific evidence.
“Nutrition science is difficult to interpret,” she said. “It’s very hard to isolate causes, and we like causes. As humans, we prefer these kinds of very direct cause-and-effect relationships, and that is what misinformation really thrives on.”
The rebel uses very extreme anti-establishment, anti-modern medicine language to spread dietary misinformation, while the hustler typically offers quick, ‘one-size fits all’ solutions
— Marlana Malerich, Rooted Research Collective
A typical example is how some ingredient or food has been linked to cancer.
“That’s it. No more information. That word immediately triggers fear... By constantly focusing on these direct cause-and-effect relationships with zero context, it’s people’s risk perception that gets distorted in the long run, the way they think about food – and their scientific literacy gets eroded.”
FoodFacts wants to highlight the harm that comes from exposure to fear-based messages. “That could be anything from demonising accessible food, getting people to lose sight of what truly matters, and focusing on the wrong things,” she explained. “It could be developing negative, obsessive attitudes to food. And the biggest impact by far is that it undermines trust in the experts, in the science, in the people who are there to help, which then can lead to avoiding rejecting essential treatment.”
A study on 54 “super spreaders” of nutrition misinformation on Instagram, who between them reached 24 million people, found that 96 per cent of them had clear financial incentives for pushing extreme dietary advice. “Many sold health packets or coaching; they often sold supplements,” said Marlana Malerich, cofounder of the Rooted Research Collective, which conducted the study in conjunction with FoodFacts. “There were some that we were able to estimate earned up to $100,000 [€86,000] per month across multiple channels.”
These individuals, she reported, all fit into one of three personas: the doc, the rebel or the hustler. The first category prominently display “doctor” in their Instagram profile, whether or not they have any expertise in medicine. The rebel uses very extreme anti-establishment, anti-modern medicine language to spread dietary misinformation, while the hustler typically offers quick, “one-size fits all” solutions. They tend to talk joyfully about how “I did this one thing…”.
“We found three different messaging strategies: fearmongering, joy-mongering, and sprinkling,” said Malerich, who believes the third of these “might be one of the more insidious ways nutrition disinformation is spread”. Such Instagram accounts were not necessarily anything to do with nutrition “but all of a sudden, out of nowhere, there’d be some sort of extreme dietary advice and, ‘Oh, you should buy my product’.”
These influencers tap into very real public concerns, she said, using emotional storytelling rather than data-driven insights. “They offer easy, black-and-white solutions in a world where people are tired of making choices, and food literacy is declining.”
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And, most importantly, they are meeting people where they are at – online. She urged the assembled nutritionists and dietitians to use social media to promote fact-based information.
Just how difficult it is for the lay person to know who to believe was illustrated in a presentation by Gary McGowan, a doctor at Cork University Hospital and cofounder of online fitness coaching company Triage Method. He analysed a flawed and misleading report of a ketogenic diet study, which was published in a leading US cardiac journal and amplified through online influencers.
Refuting misinformation is time-consuming. He recalled how it took him eight hours to assemble documented scientific evidence to refute a point made in one woman’s 15-second video clip. A typical response of influencers when challenged is to block him, or say they are not pretending to be clinicians, even though they are dispensing health advice. “There’s no accountability here, and it’s a massive, massive problem,” he added.
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Coming back to the story of patient X, Donnelly started him on pancreatic enzyme replacement therapy, along with nutrition supplement drinks. It took a while to coax him into reintroducing foods he had been convinced he was allergic to, as part of the high-protein, high-calorie, low-fibre diet that she was recommending.
Donnelly built his trust through explaining the fallacy of the previous advice, and through her own professional qualifications. She also convinced the consultant to delay the man’s discharge so that he would be in better shape when returning home. “By the time he was leaving the hospital, we did get his bowels under control. His quality of life was starting to improve. He was going to be able to socialise; to go out of the house.”
It’s €1,500 a night to stay in St Vincent’s private hospital, she added, so the cost of him staying an extra seven nights would have been billed to the private health insurance provider, through which he sourced the “wellbeing” service in the first place.
- For information on registered dietitians, see coru.ie or the Irish Nutrition and Dietetic Institute (indi.ie).
