The fight against gut health misinformation

The fight against gut health misinformation

With so much access to information, many people find it hard to balance advocating for their health needs and identifying the proper care
Published: March 7, 2023

It’s a Saturday night at Tulane University and 21-year-old Ariana Defranc is lying on her bed with a heating pad pressed to her stomach. She can hear her friends blasting music and getting ready to hit the bars as her bloated stomach keeps her tethered to her bedroom.

Her discomfort reached a peak during the COVID-19 pandemic and she began visiting a doctor for food sensitivity testing. But even as she eliminated foods, she didn’t see any real change.

“I think honestly, I felt like no one would really have a solution. Because I thought to myself that I know it’s not dairy, I know it’s not gluten, and if I go to the doctor he’s going to tell me it’s IBS,” Defranc said.

It wasn’t until her mom saw a TikTok video about Retrograde Cricopharyngeal Dysfunction (R-CPD) that the dots began to connect. The video perfectly outlined her symptoms — the major one being that she’s never been able to burp. The comments listed information for Dr. Robert W. Bastian from the Bastian Voice institute in Chicago, who specializes in the condition. Defranc and her older brother Adam, who also suffered from the same symptoms, met virtually with him.

For those without the condition, the cricopharyngeal (CP) muscle, located at the junction of the throat and esophagus, relaxes to release pent-up gas after eating or drinking. For Defranc and Adam, that muscle remains stiff, making burping impossible.

A few months later, Adam went to Chicago for surgery to relax his CP muscle. While the surgery succeeded and Adam now experiences fewer symptoms, Defranc is still skeptical of the misinformation that can spread on TikTok.

“Parents, friends, TikTokers always want to seem like they have the solution when it’s so not the solution,” she said.

According to The New York Times, videos tagged #guttok, the umbrella trend where people turn to TikTok to share their stomach symptoms and success stories, had 400 million views. These videos range from herbal tea recipes to stool analysis. And, like the content itself, the level of expertise varies from video to video.

To registered dietitian Kirsten Jackson, social media is more harmful than helpful when it comes to gut health.

“Everyone has got an opinion on gut health, yet very few of them are actually qualified. So you get people talking about detoxes, skipping meals,” Jackson said. “Sometimes they’re kind of encouraging very eating disorder behavior.”

Jackson, who runs an online service called The Food Treatment Clinic for people with irritable bowel syndrome (IBS) and other functional gut disorders, said it’s ironic that people can share this false information without consequence. If she were to promote taking Omega-3 pills instead of antidepressants – real advice she’s seen on social media – she would likely be reported and have her license taken away.

Despite the dangers of misinformation, Jackson said social media can help dieticians get the correct information out there. Because of this, she started the Facebook group IBS Management for Women. She monitors the discussions in the group and looks out for people promoting random supplements for profit or disordered eating behaviors.

“Facebook groups could be a really good and easy way for people to access support from their peers,” she said. “So obviously some people have their doctor, their dietician, but actually having support from other people who are actually going through what they are can mean a lot.”

University of Connecticut senior Aria Moshief finds that the online conversation around gut health makes her feel like less of an outcast.

Moshief’s stomach problems started in high school when she couldn’t eat without feeling like she was going to throw up. She’s adopted and has no idea of her biological family’s medical history – so when her pediatrician told her she was just anxious and should do yoga and breathing exercises, she did.

A year and a half later her symptoms persisted. Thanks to her mother’s advocacy, she went to a gastroenterologist who diagnosed her with Small Intestinal Bacterial Overgrowth and H. pylori, an infection of the stomach.

“It’s been something that I’ve dealt with for a long time, and no one really wants to talk about it because it’s labeled as gross or you don’t talk about that,” she said. “The fact that people are bringing it up in conversation makes me feel better.”

Sophie Little began experiencing gastrointestinal issues when she was 18 years old, following a big breakup. The Syracuse University senior was diagnosed with IBS by a gastroenterologist and told to cut out acidic foods such as coffee, fried foods and spicy meals.

Throughout that diagnosis process, Little said she found herself downplaying her symptoms often. Her mother accompanied her to the appointments and made sure Little was honest about the severity of her symptoms.

“As women, unfortunately, sometimes your issues aren’t taken as seriously. People think you’re exaggerating,” Little said. “And so she would teach me how to articulate my problems, making clear to the doctor that it’s really a hindrance to my life.”

IBS impacts two and a half women for every one man in the United States, according to Massachusetts General Hospital neurogastroenterologist Dr. Kyle Staller. IBS is a disorder of brain-gut interaction, in which your stomach’s nerves send incorrect information to the brain, making your bowel movements either too frequent or not frequent enough.

“It’s almost like you have your check engine light on in your car. You’re constantly getting a check engine light, even though the car continues to run,” Dr. Staller said.

While IBS often gets associated with anxiety, depression and other psychiatric or psychological symptoms, it doesn’t cause those symptoms. If you have anxiety or depression, you’re more likely to have IBS – not the other way around, Dr. Staller said.

Though women are more frequently diagnosed with IBS, they’re often hesitant to get treatment out of fear of being dismissed by healthcare professionals. Not only is there a bias from medical professionals toward patients with IBS, but Dr. Staller said patients often feel embarrassed by their symptoms.

“People tell them it’s in your head, you just need to stress less, or you’re just not eating the right things. And I think that’s the wrong message to send to people,” Dr. Staller said. “I think we often blame the victim in this case, or in this case, the IBS sufferer, and that’s probably related to gender roles as well, where we don’t take their illness as seriously as we should.”

Lauren Materia’s hesitancy to go to the doctor stems from the fear that she’s being too dramatic. The 23-year-old started getting pain on the left side of her stomach during her junior year at Champlain College in Vermont.

She began to self-diagnose, thinking for a while she was lactose intolerant and cut out dairy. Then she moved on to a brain-gut specialist who gave her probiotics, supplements and the knowledge that her left hip and back were out of alignment. But still, she would often have to curl up in a ball, holding a heating pad to her left side to relieve the bloating and pain.

A family history of cancer has led to her fear of traditional doctor appointments. This was only exacerbated when her twin sister had appendicitis in the summer of 2021, causing doctors to find a lesion that could have become cancerous later in her life.

“It’s probably me overthinking it, but I’m hesitant to go because what if they’re like, you need an MRI now,” Materia said. “Like, what if it’s bigger?”

According to a 2019 University of Copenhagen study, women are typically diagnosed with illnesses later than men. The study followed 6.9 million Danish people over 21 years and found that when it came to cancer women were diagnosed on average 2.5 years later than their male counterparts. When it came to metabolic diseases like diabetes, that number jumped to a four-year difference in diagnosis.

Sophia Lynch, a senior at Mass College of Art and Design, has undergone four endoscopies and colonoscopies since 2020 for stomach issues that usually present as bloody stool. During her first scope, she was told that the doctor had found precancerous cells at the junction of her stomach and her esophagus – the exact place her mother was receiving chemotherapy during that time.

After determining that the cells were not precancerous with a biopsy, the doctor ordered a regimen of an endoscopy and colonoscopy every three months. After going through three more procedures Lynch is currently looking for a new gastroenterologist and continues to lack a proper diagnosis.

As Lynch waits for answers, she often uses TikTok and other forms of social media to find remedies.

“You see a lot of health influencers who all say different things work best,” Lynch said. “So I just kind of took a little bit of advice from each and started making some small changes.”

While influencers with hefty follower counts may present temporary solutions, Dr. Staller said the average social media post about gut health is incorrect and based on one’s own “anecdotal experience.”

Dr. Braden Kuo, another gastroenterologist at Mass General Hospital, said these posts do help normalize the dialogue around stomach health, which was much more taboo in the past.

“I do think it’s good to have a much more open forum to discuss these things and destigmatize these people, destigmatize these situations and people that are dealing with them,” said Dr. Kuo. “I think there are challenges when people discuss extremes.”

With influencers charging anywhere from $100 to $1000 or more for a simple branded Instagram story, the commoditization of remedies has made it increasingly difficult to determine the legitimacy of a product. Brands like Athletic Greens, a drinkable enzyme powder that supposedly helps gut health, gain sponsorship from influencers under the hashtag #agpartner. Videos with this tag have more than 38 million views, according to The New York Times.

For Maddie Roberts and other young women in Tik Tok’s target audience with gut health problems, these products are familiar on their screens.

The Syracuse University senior has been dealing with gastroenterological issues since she was around seven or eight years old. Even before being able to digest regular food, her mother had to feed her with special formula. Now she sees the very real topic of gut health becoming trendy in the diet world.

“I feel like there are two sides to it and it can get really hard to differentiate what’s just someone’s experience, like actual nutritional advice from qualified professionals, versus just fad diets and marketing and trying to make money,” Roberts said.