How to Spot IBD Misinformation Online
With unlimited access to IBD information online, it’s hard to know which sources you can trust. The patient-advocate and Everyday Health blogger Rachel Dyckman is here to help you separate fact from fiction.
When I was diagnosed with ulcerative colitis (UC), I didn’t know many people with the condition, and I had a laundry list of questions. Like many other people, I turned to “Dr. Google” for information.
And who wouldn’t? Within seconds, my search query produced numerous answers. Unfortunately, a lot of the information I found was confusing, and one piece of advice often contradicted the next. For example, I read that I should reduce my fiber intake, but follow a vegan diet consisting entirely of high-fiber foods, and avoid dairy but eat plenty of fermented foods like yogurt. Some sources told me that diet doesn’t impact IBD, while others claimed to cure IBD through diet alone. Needless to say, the more I searched for answers on the internet, the more my frustration grew, along with my list of questions. As I soon learned, the internet can be both a source of information and a breeding ground for misinformation.
As a registered dietitian specializing in gastrointestinal health, I often find myself advising patients on where to go for verified medical advice on IBD, how to think about personal anecdotes on patient blogs and whether or not they can be generalized, and why it’s important to avoid hyperbolic claims of cures for chronic diseases, which by definition are lifelong.
Read on to learn what to look for and why, to help you differentiate IBD fact from fabrication.
Beware of IBD ‘Cure’ Claims
Over the years, I have come across my fair share of misleading headlines advertising IBD remedies, promising everything from “complete remission in just four weeks” to “healing your ulcerative colitis naturally,” and even claims to “cure your IBD in 90 days.” Unfortunately, if something sounds too good to be true, it usually is. Often, these purported “cures” encourage people to stop medications and conventional treatments, which can be dangerous without close monitoring by a gastroenterologist.
There are no magic bullet solutions to complex medical conditions like IBD. Science tends to move slowly, gradually uncovering new information, helping us gain a better understanding of the condition with each study published. IBD research has come a long way, and scientists continue to work diligently so that hopefully one day we will have a cure. For now though, IBD can be managed well and put into remission.
Steer Clear of Sites That Recommend Tests That Aren’t Clinically Validated
With growing interest in diet and the gut microbiome in recent years, food sensitivity tests and stool tests have gained traction within the online IBD community. While these tests sound intriguing, they are not clinically validated or reliable. According to the?American Academy of Allergy, Asthma, and Immunology (AAAAI), unlike allergy tests, there is no single test that can accurately pinpoint exactly which foods you are sensitive to. Food sensitivity tests typically measure the body’s release of a protein called IgG in response to different foods. IgG release is thought to be the body’s normal response after contact with foods it has already been exposed to, per the AAAI. Therefore, these tests may falsely indicate that you are sensitive to the foods you consume most frequently, rather than to those that do not agree with you.
When it comes to gut microbiome stool tests, the science simply isn’t there yet, according to research published in the journal Nature in August 2021. These tests claim to provide an accurate depiction of the microbes living in your gut, but according to?research published in the journal Clinical Gastroenterology and Hepatology in January 2019, our gut microbiome is constantly changing, so a single stool sample can't provide an accurate representation. Further, according to the aforementioned research, the stool culturing techniques these test companies use favor bacteria that thrive in oxygen, but the majority of our gut microbes actually thrive without oxygen, so they may not be detected by the test. Even if culturing techniques accurately captured the vast range of microbes in the gut, we do not have standard reference ranges for a “healthy” gut microbiome, according to the Nature research, so this data is difficult to interpret.
Food sensitivity tests and gut microbiome stool tests are often used as a way to profit off consumers by encouraging them to purchase probiotic supplements to “fix” their gut microbiome, or diet plans to avoid foods they are supposedly sensitive to. At some point in the future, we may have more accurate testing methods and the knowledge to interpret test results, but for now, it’s best to skip these tests and be wary of those who recommend them online.
Watch Out for Interchangeable Use of the Terms IBD and IBS
Inflammatory bowel disease and?irritable bowel syndrome (IBS) have similar abbreviations, but they are entirely different conditions. If the two are conflated, that's a telltale sign that the individual providing the information is not well-versed in IBD. While IBS is associated with a handful of symptoms that overlap with those of IBD, such as diarrhea and abdominal cramping, IBS is a functional disorder of gut-brain interaction rather than an autoimmune disease. This means IBS is associated with dysregulation in how the gut and brain communicate with each other, leading to increased sensitivity in the gut and abnormal intestinal contractions. Unlike IBD, IBS is not associated with GI inflammation, physical damage to the GI tract, increased risk of colorectal cancer, or complications affecting other parts of the body. It is possible to have both IBS and IBD concurrently, but each condition requires a different treatment approach.
Look out for the use of incorrect terminology grouping the conditions together, like “irritable bowel disease” or “inflammatory bowel syndrome,” as this may indicate an unreliable information source.
Consider the Source of Your Information
When searching for IBD information online, it’s important to seek out trusted sources, such as medical institutions or those with medical or scientific credentials. Individuals with credentials in the healthcare or science fields go through extensive training to be qualified as an expert. Additionally, in order to maintain their healthcare credentials, individuals must meet continuing education requirements and abide by a code of ethics to remain in good standing. Those without credentials do not face significant repercussions or risk to their career when they provide faulty information.
It is also important to understand the scope of practice of different healthcare professionals and to seek information from those who have the right credentials for the specific area they are providing information on. In addition to MD, here are some common healthcare-professional credentials to know when you're researching medical advice online.
- DO (doctor of osteopathic medicine)?A trained and licensed doctor who attended an osteopathic medical school and is likely an appropriate source of medical information, similar to an MD
- NP (nurse practitioner) A?nurse with a graduate or doctoral degree who has completed advanced clinical training; also likely to be an appropriate source of medical information
- PA (physician assistant) A?practitioner with advanced clinical training who works under the supervision of a physician and is likely to be an appropriate source of medical information
- RDN (registered dietitian-nutritionist) A?healthcare professional with education and advanced training in diet and nutrition. RDNs are likely to be an appropriate information source for medical nutrition therapy, or nutrition recommendations aimed at treatment or management of specific medical conditions. Keep in mind that RDNs and physicians are the only medical professions legally allowed to prescribe personalized meal plans. Additionally, the title “nutritionist” alone is not regulated and does not indicate specific education or training.
- NMD (doctor of naturopathic medicine) Practitioners who focus on natural and alternative therapies; NMDs are likely to be an appropriate information source for alternative therapies and lifestyle modifications.
- FACG (fellow of the American College of Gastroenterology) A?certification for gastroenterologists with advanced education and training in the management of gastrointestinal conditions. These individuals are likely to be an appropriate resource for accurate and up-to-date IBD information.
Helpful sources of trustworthy IBD information include:
- Crohn’s & Colitis Foundation
- American College of Gastroenterology
- American Gastroenterological Association
- World Gastroenterological Organisation
Look for High-Quality Scientific Studies to Back Up Claims
Not all research is created equal, and just because someone cites a study does not mean their statement is true. Signs that a bit of research or a study is not ready for human use include that it had only a handful of participants, or that it was conducted on animals, in test tubes, or in petri dishes (which means the work is in very early stages). While these studies may serve as building blocks for future research, their findings are not generalizable to most people, and we cannot draw conclusions or make concrete recommendations from them.
To identify high-quality studies, look for those published in peer-reviewed journals, which means they’ve been critiqued by other researchers in the field. Some journals to familiarize yourself with include:
- Clinical Gastroenterology and Hepatology
- Crohn’s & Colitis 360
- Inflammatory Bowel Diseases
- Nature Reviews Gastroenterology & Hepatology
- New England Journal of Medicine
- The American Journal of Gastroenterology
- The Cochrane Database of Systematic Reviews
- The Lancet
Randomized controlled trial study designs are considered the gold standard for medical research, and those with large sample sizes are ideal. Further, keep in mind that studies published many years ago may not still hold true today, as research techniques have advanced and our understanding of the subject matter has changed.
Recognize Potential Conflicts of Interests
Conflicts of interest arise when a person or entity becomes unreliable because of a self-serving interest, causing their judgment to be biased. While conflicts of interest do not automatically mean someone’s judgment is faulty, they’re certainly a red flag to keep in mind when you evaluate an information source online. In healthcare, for example, practitioners who recommend supplements that they sell themselves or financially benefit from in some way have a conflict of interest. In research, conflicts of interest may arise when a study is funded by the company selling the product in question, since it is in the company’s best interest for study outcomes to favor their product. Before taking information at face value, consider who is personally or financially benefiting from selling you something or leading you to believe something.
Be Wary of ‘It Worked for Me, So It Will Work for You’ Claims
When we hear success stories about a particular diet, supplement, or treatment that helped someone achieve remission or symptom control, it’s only natural to want to try it too, expecting the same result.
Although it's tempting, just because something worked for one individual does not mean it will work for everyone or is safe and appropriate for everyone. Disease course and severity varies for each individual with IBD, and the experience of one person or even a handful of people does not equate to high-quality scientific evidence.
Online, these types of claims are commonly found on social media platforms, IBD forums, and support groups, where individuals are free to post their claims whether they're valid or not. I’ve seen individuals claim that a strictly vegan diet enabled them to come off all their medications, while others attribute their symptom relief to expensive supplement regimens and probiotic pills. Some have even promoted the use of fasting protocols, meditation, and infrared saunas in lieu of conventional treatments. While social media, IBD forums, and online support groups are helpful for building a sense of community and connecting with others going through similar IBD-related struggles, they should not be relied upon for specific medical or nutrition advice.
Important: The views and opinions expressed in this article are those of the author and not Everyday Health.