Why You Should Never Settle for an IBS Diagnosis
IBS is a BS diagnosis. There, I said it. But I say it from a place of genuine compassion because I want to help you understand what it really is. The symptoms you experience as someone diagnosed with IBS are very real and have a massive impact on your quality of everyday life. It can stop you from feeling comfortable with leaving the house, looking after your family, going to work, seeing friends or doing that exercise class you used to love.
So, providing a ‘wastebasket’ diagnosis that discourages sufferers from finding and treating the underlying root cause of their symptoms is an approach that is completely disempowering and well past its use-by date. Last week I wrote about the seven most common mistakes I’ve encountered that I want to help you avoid while trying to heal your gut. This week, I'm covering off the biggest mistake of them all - settling for a diagnosis of IBS. There is so much more you can do after your doctor gives you this label, so please fight for your health and continue searching.
Here is a summary of what we are going to cover:
> The IBS definition used in research and abused in clinical practice
> How a diagnosis of IBS can be disempowering and prevent you from finding the real reason for your symptoms
> How research over the last 5 years about the gut microbiome has changed the way we look at IBS
> Why identifying the actual cause of your symptoms is the only way to beat IBS
What does IBS actually mean?
IBS is technically defined by the Rome IV criteria (1), established for research purposes but also often used in clinical practice: Recurrent abdominal pain, on average, at least 1 day per week in the last 3 months, associated with 2 or more of the following criteria: – Related to defecation – Associated with a change in frequency of stool – Associated with a change in form (appearance) of stool Criteria fulfilled for the last 3 months with symptom onset at least 6 months before diagnosis
Given how broad and nonspecific the criteria is, it’s no surprise that in Western countries, including the United States and Australia, approximately 10% of the general population fulfills the Rome IV criteria for IBS (2).
Certain red flag (alarm) symptoms such as gastrointestinal bleeding, unexplained weight loss, and age were selected to be used as referral guidelines for further medical testing (e.g. colonoscopy) to rule out colon cancer and inflammatory bowel disease (3). Meaning everything else was left on the table and lumped into IBS.
The problem is that there are countless other identifiable (and treatable!) gastrointestinal disorders and triggers responsible for IBS symptoms, beyond the very severe colon cancer and inflammatory bowel disease. These are actual root causes of IBS that the medical community are less likely to acknowledge and test for. The bottom line, you may end up with an IBS diagnosis too quickly. That was certainly my experience and that of many of my clients before we started working together.
Why they can’t find a cure for IBS
The reason that an underlying cause and treatment for IBS is yet to be discovered, is that you can’t find a single cause and treatment for something that isn’t one condition. There might be as many as 10 to 50 or more individual, identifiable diseases or disorders, each with their own unique pathogenesis that have been lumped into IBS. Why? Because when the IBS diagnosis came about, there were that many things the world wasn’t yet aware of. Lucky for us, science has made headways and we now have a greater number of tests you can complete to rule out some more real diagnoses. I am yet to have a client who comes to see me with a diagnosis of IBS, that doesn’t walk away with one/many different and completely treatable condition/s. It’s the (gluten-free) bread and (grass-fed) butter of what I do as a practitioner and why I absolutely love my job!
Why does IBS as a diagnosis exist?
So, if it doesn’t make any sense, why does it still exist and why do a whole bunch of smart people still use it everyday? Well, the simple answer is: we gravitate towards labels to reduce perceived uncertainty and fear. Translation: it feels less scary to be told you have IBS (along with 10% of the population) rather than “we’re not sure what is wrong with you”.
As the man credited with creating the IBS label, Walter C. Alvarez, said in 1947: “The great thing in handling these persons is not to reinforce their fear that there is something seriously wrong with the colon” (4). A label can also allow patients to feel their condition is understandable, that there is research on it and that they are part of a community. It means a person suffering with IBS is not alone or unique, but rather has a condition that others have been able to manage.
IBS has historically been known as a diagnosis of exclusion (3). That is, “we haven’t been able to find a specific cause for your symptoms, sorry”. However, because the unknown element of this diagnosis provided little comfort to many sufferers, attempts have recently been made to make the term a ‘positive diagnosis’. That is, a single condition diagnosed with the Rome IV criteria, rather than the ‘wastebasket’ diagnosis of unknown cause/s. But while a label might make this group of symptoms easier to talk about and provide comfort to sufferers in the short term, it actually does little to empower an individual to find a long-term solution to their symptoms. And I am here to tell you, it is VERY likely that there is a solution.
Why it is time to ditch IBS as a final diagnosis
A label that disempowers patients
While there are arguably pros and cons of a medical diagnosis or label, IBS is particularly problematic as a label because it provides no effective guidance on next steps. Mainly because the IBS label implies that you have found the problem and it is unnecessary to look for a root cause or specific treatment. IBS is not a cause, it is only a description of your symptoms. Let me explain this a bit more because it is important. IBS lists symptoms like abdominal pain, diarrhoea and gas, rather than the root cause which is actually causing that abdominal pain, diarrhoea and gas. This might actually be a parasitic infection in the large intestine or a bacterial overgrowth and damaged gut lining in the small intestine to name a few of the large list that we can now test for. But more about this next week.
If you don’t want to spend the rest of your life managing symptoms, you have to dig a little deeper until you find the cause. After being labeled as having IBS-C, I never once accepted that was the end of the line, and was vindicated when a practitioner finally found multiple pathogens and a bacterial overgrowth - things I could actually treat!
The discovery of actual conditions
So, historically, as long as you had abdominal pain with constipation or diarrhoea but didn’t have colon cancer or inflammatory bowel disease, you had IBS. Fortunately, the last decade has brought with it a whole host of research on gut health and the identification of specific diseases and disorders. The sooner you can get a proper diagnosis, the sooner you can get to treating the underlying root cause and get back to living a normal life. The IBS ‘life sentence’ can be lifted.
Small Intestinal Bacterial Overgrowth, disrupted gut microbiome, increased intestinal barrier permeability (leaky gut), gut infections (parasites, bacteria and yeast) as well as food sensitivities and malabsorption issues are all common diagnoses ultimately given to IBS sufferers.
Even more concerning, is the number of serious chronic conditions linked to long-term gut dysfunction. For those diagnosed with IBS and for whom no effective treatment is provided, the risk of developing secondary conditions such as thyroid or adrenal issues, autoimmunity, colorectal cancer and mental health conditions increases (5, 6). Not only is identifying the underlying root cause critical to eradicating symptoms, it is also critical to improving your long-term health.
More accurate and reliable testing
In the past, many practitioners preferred to give a diagnosis of IBS than send their patients for expensive and unreliable tests. Fortunately, there are now a number of diagnostic tests with significant supporting research that allows us to accurately test for and diagnose specific conditions, thus removing the need for an IBS label. These include advances in stool testing that now uses DNA technology to identify previously undetected harmful bacteria and parasites as well as the improved reliability and understanding of hydrogen and methane breath testing.
While some sufferers might not be able or prepared to pay for the necessary testing, without a better idea of what is causing your symptoms effective treatment is really hard to guess at.
Understanding the microbiome
The recent explosion of research on the ecosystem residing in our intestines has provided support for the concept that a disruption of the gut microbiome may cause the onset and exacerbation of IBS-type symptoms (7). Recent studies have shown that up to 83% of patients with IBS have abnormal faecal biomarkers, and 73 percent have intestinal dysbiosis (i.e. a disrupted gut microbiome) (8).
This is a critical development because traditional testing by practitioners has not included a look at the number and diversity of both commensal and pathogenic bacteria in the gut, and may explain why probiotic and prebiotic treatments have been effective in some IBS sufferers (9). In addition, parasites that were once thought to be commensal, such as Blastocystis hominis and Dientamoeba fragilis, are now known to be pathogenic in symptomatic patients (10, 11).
The role of stress in IBS
In the past, stress was thought to be a root cause of IBS, leading many patients to be told “it’s all in your head” and creating a stigma around an IBS diagnosis. But, while stress has been shown to contribute to and impact the severity of symptoms (12), it is the damage that it causes to the structure and physiological functioning of the GI tract and the microbiome that actually leads to IBS symptoms (13). Let me explain this a bit more. Stress impacts greatly on motility, enzyme, bile and stomach acid secretions; intestinal permeability; and diversity of the microbiome. Once the stress has caused these functional and structural issues, they can’t generally be undone by simply removing the stress. So, while activities that help manage stress may reduce the severity of your symptoms, treating the underlying cause of IBS is still paramount.
Final thoughts
I honestly believe that a diagnosis of IBS is ineffective at best and potentially dangerous at worst, if you choose to stop searching for a root cause. Simply accepting IBS as a life-sentence and managing symptoms without addressing the underlying causes, dooms you to a lifetime of unnecessary suffering and frustration. At the end of the day, I really don’t mind someone being told they have IBS. It says to me that they have been checked for the really life threatening stuff by their doctor and that they have specific gut issues that need fixing, which gives me something to work with. The valuable take-away here is that we now have a much better idea of what causes IBS-type symptoms and up-to-date testing, which we will explore in lots of detail over the next two weeks.
If you have IBS, I recommend finding a functional practitioner to work with that can identify and treat your specific underlying causes, because there is always a reason for your symptoms. And please, please, don’t settle for a diagnosis of IBS.
Healing the gut is a journey. If you are ready to begin yours, please head to the Work With Us page to learn more about how we work online with clients in many countries to test for and treat the various root causes of IBS symptoms and other GI conditions.
References:
Mearin, F., et al. (2016). Clinical Practice Guideline: Irritable bowel syndrome with constipation and functional constipation in the adult. Rev Esp Enferm Dig, 108(6), 332-63
Saha, L. (2014). Irritable bowel syndrome: Pathogenesis, diagnosis, treatment, and evidence-based medicine. World Journal of Gastroenterology, 20(22), 6759–6773
Camilleri, M. (2012). Irritable bowel syndrome: how useful is the term and the “diagnosis”? Therapeutic Advances in Gastroenterology, 5(6), 381–386
Alvarez, W. (1947). Indigestion and abdominal pain with negative findings. Canadian Medical Association Journal, 57(5), 425–432
Canavan, C., West, J., & Card, T. (2014). The epidemiology of irritable bowel syndrome. Clinical Epidemiology, 6, 71–80
Chang, H., et al. (2015). Irritable bowel syndrome and the incidence of colorectal neoplasia: a prospective cohort study with community-based screened population in Taiwan, Br J Cancer, 112(1), 171-6
Distrutti, E., Monaldi, L., Ricci, P., & Fiorucci, S. (2016). Gut microbiota role in irritable bowel syndrome: New therapeutic strategies. World Journal of Gastroenterology, 22(7), 2219–2241
Major, G., & Spiller, R. (2014). Irritable bowel syndrome, inflammatory bowel disease and the microbiome. Current Opinion in Endocrinology, Diabetes, and Obesity, 21(1), 15–21
Spiller, R. (2008). Review article: probiotics and prebiotics in irritable bowel syndrome. Aliment Pharmacol Ther, 28(4), 385-96
Sekar, U., & Shanthi, M. (2013). Blastocystis: Consensus of treatment and controversies. Tropical Parasitology, 3(1), 35–39
Embree, J. (1998). Dientamoeba fragilis: A harmless commensal or a mild pathogen? Paediatrics & Child Health, 3(2), 81–82
Blanchard E., et al. (2008). The role of stress in symptom exacerbation among IBS patients. J Psychosom Res, 64(2), 119-28
Kennedy, P., Cryan, J., Dinan, T., & Clarke, G. (2014). Irritable bowel syndrome: A microbiome-gut-brain axis disorder? World Journal of Gastroenterology, 20(39), 14105–14125