Many microscopic colitis (MC) patients put their disease into remission by following an elimination diet. And most of us find that following a meticulous elimination diet is not much fun, to say the least. But persevering can bring remission of the clinical symptoms of the disease without a need for any prescription drugs. And although no one enjoys the process, once accomplished, it can bring a powerful sense of self-satisfaction and self-reliance. And most importantly, it allows the symptoms of the disease to be completely controlled without any need for powerful and expensive medications. Recently, as reported in an online article on the Gastroenterology & Endoscopic News website, a panel of gastroenterology experts speaking at the 2025 ASPEN Nutrition Science & Practice Conference issued strong cautions about the broad use of elimination diets across gastrointestinal (GI) disorders — a perspective that may affect how physicians approach dietary therapy in MC in the future (Starr, 2025, June 2).1 The panel acknowledged the clinical value of elimination diets in certain GI conditions such as eosinophilic esophagitis (EoE) and irritable bowel syndrome (IBS). But they focused on numerous caveats regarding the use of elimination diets when treating IBD. They pointed out that while these diets have demonstrated "high rates of histologic and symptomatic response", especially when closely monitored and tailored to individual needs, they also emphasized that:
This perspective is highly relevant to MC, where patients often adopt elimination diets to identify triggers such as gluten, dairy, soy, eggs, supplements and even certain medications. Many of us have not only seen dramatic symptom improvement when the responsible triggers are removed from our diet, but we've been able to keep our symptoms in remission by continuing to follow diet restrictions. And although this medical advisory should prove to be helpful in future treatments, that's not guaranteed, because of all the caveats mentioned, and the fact that IBD treatments involving diet changes typically lack validation through controlled trials. Without such evidence, most clinicians are skeptical. While MC was not specifically mentioned during the ASPEN panel, the medical community’s general cautionary stance on elimination diets carries indirect but important implications for how such diets are perceived and prescribed in the care of MC patients. The panel acknowledged that elimination diets, including elemental and multi-food elimination regimens, can be highly effective, but they also pointed out that patient adherence over time tends to be poor. As we are well aware, many MC patients report long-term adherence due to symptom relief, but most of us also struggle with the emotional, social, and nutritional challenges of maintaining a restricted diet. Unlike EoE or IBS, where elimination diet outcomes are supported by growing bodies of research, MC continues to be underrepresented in dietary studies. The absence of randomized controlled trials or guidelines specifically validating elimination diets for MC may cause clinicians to hesitate in recommending them, despite patient-reported success stories. The panel urged clinicians to screen for avoidant/restrictive food intake disorder (ARFID) and other “disordered eating behaviors” before initiating restrictive diets. This is particularly relevant in MC, where prolonged gastrointestinal distress can relatively quickly disrupt our eating habits. But a growing trend is developing. Gastroenterologists seem to be increasingly trying to label the use of self developed elimination diets by IBD patients as "eating disorders" that should be treated by psychologists. This is an issue I've written about previously, where gastroenterologists try to blame diet changes by IBD patients (without medical guidance) on psychological issues, when the changes are actually made in order to prevent (or at least minimize) clinical symptoms of IBD (Persky, 2025, April 1).2 Gastroenterologists are increasingly expected to collaborate with dietitians and pharmacists to ensure that elimination diets are nutritionally sound and psychologically safe. For MC patients, many of whom self-direct dietary interventions due to limited clinical guidance, this means a growing need for formalized support from GI nutrition teams, rather than relying solely on trial-and-error. But although most clinicians are actually concerned about patient welfare, from the patient's point of view, policies such as this typically result in increased medical expenses, because it adds a need to see additional specialists, and a need to schedule additional healthcare appointments. Celiacs went through a similar cycle a decade or so ago. Such cautionary advisories are reminiscent of "warnings" that gastroenterologists have issued in the past regarding the proliferation of celiac patients treating themselves by following a gluten-free diet, rather than seeking an official celiac diagnosis. Most of us can remember what happened a couple of decades ago when the medical profession noticed that many celiac patients were "self treating" by adopting a gluten-free diet without an official medical celiac diagnosis. As the trend became increasingly popular, gastroenterologists began to issue more frequent advisories in an attempt to discourage the trend. Gastroenterologists began formally and consistently warning against self-treating celiac disease without a medical diagnosis around the late 2000s to early 2010s, with a significant increase in published warnings and clinical guidance between 2012 and 2015. Why did this trend (to self-treat) develop? Despite advances in awareness and diagnostics, a search of the literature shows that multiple studies have concluded that a realistic and evidence-backed estimate is that only 15% to 30% of people with celiac disease have been correctly diagnosed by the medical profession. This widespread underdiagnosis has led many individuals to self-identify through dietary trials — a fact that helps explain both the popularity of gluten-free diets, and the resistance from medical authorities who are taught to only recognize evidence validated by official medical tests, or official medical trials. The sad truth is, many of the warnings from gastroenterologists and medical organizations about not adopting a gluten-free diet without an official celiac diagnosis, while rooted in legitimate clinical concerns, can often impose unreasonable hardships on patients. Patients seek relief, not a label. Most people who adopt a gluten-free diet do so because they feel better, not because they’re chasing a diagnosis. For individuals suffering from chronic diarrhea, fatigue, joint pain, brain fog, or other inflammatory symptoms, the relief that comes from eliminating gluten can be profound and life-changing. And from the patient’s perspective, why should they continue eating something that clearly makes them sick, just so they can be told officially that it’s the thing making them sick? Of course this undermines the medical argument that testing must precede dietary change, especially when that testing requires ongoing gluten exposure, which may be intolerable or debilitating. After all, an official celiac diagnosis doesn't change the treatment. Celiac disease is treated exclusively through diet. There is no medication or surgical cure. Whether a person has celiac disease, non-celiac gluten sensitivity (NCGS), or undiagnosed microscopic colitis that improves when gluten is totally avoided, the clinical advice is the same: avoid gluten. So, from the patient’s standpoint, the expensive and invasive diagnostic process can seem like an unnecessary formality that doesn’t alter their course of action. A gluten challenge is a rather barbaric diagnostic procedure. Medical guidelines often require a patient to consume gluten daily for weeks before testing to avoid false negatives. However, for patients who already know gluten causes severe symptoms (neurological, gastrointestinal, or autoimmune flares), this can feel ethically and physically unreasonable. And unfortunately, many gluten challenges don't allow sufficient time for an adequate level of damage to develop to qualify for a celiac diagnosis, due to the relatively strict celiac diagnostic criteria (a minimum of a Marsh 3 level of damage). Patients rightly ask: “Why should I make myself sick for six weeks just to prove what I already know?” “Would a doctor ask a peanut-allergic person to eat peanuts just to confirm it in a lab?” This creates a dilemma for medical professionals. Many of the warnings against self-diagnosis carry undertones of professional gatekeeping. Doctors, particularly in gastroenterology, may feel that widespread self-diagnosis undermines their role in managing chronic GI conditions. Some see this as part of a broader pattern in which the medical community resists patient-driven health solutions unless they flow through institutional channels. Furthermore, celiac disease diagnosis typically leads to long-term specialist follow-ups, which generates revenue streams for lab testing, procedures (like endoscopy), and monitoring services, thereby aligning with financial incentives in the medical system. To add insult to injury, the diagnostic testing is often inadequate. Currently available celiac disease tests are far from perfect. Many patients with early-stage or patchy intestinal damage test negative on biopsy or have borderline antibody levels, especially if they've already begun reducing gluten. Serological tests (like anti-tTG or EMA) can be unreliable in patients with IgA deficiency, other autoimmune diseases, or mild mucosal damage. This means patients who do pursue testing may still be told “everything looks normal,” despite obvious gluten-related symptoms, and then they're discouraged from continuing a diet that helps them. And while clinicians don't seem to be concerned about counterproductive mistakes such as this, to patients in such a situation, this is nothing less than disastrous. Same song, second verse: This new advisory (warning) regarding the use of elimination diets for treating various gastrointestinal issues appears to have only slightly more merit than the previous warnings about adopting a gluten-free diet without an official celiac diagnosis. True, elimination diets can eventually lead to vitamin or mineral deficiencies, or some unforeseen consequence, but in reality, that possibility is almost surely no worse than allowing the gastrointestinal symptoms to continue without making the diet changes. After all, despite the often misguided attempts by gastroenterologists to disguise diet changes made to reduce clinical symptoms as eating disorders, most people probably understand the clinical symptoms of their digestive disorders better than their gastroenterologists. And most people certainly have adequate intelligence to take countermeasures with their diet (by eating alternate nutrient rich foods) or taking supplemental vitamins and minerals in order to make up for any vitamin or mineral deficiencies that might develop. Unfortunately, most practitioners don't seem to test often enough (if ever) for the most vital minerals and vitamins needed by IBD patients, anyway. So what can we conclude from all this? The continued issuance of medical advisories from the medical community, against patient initiated diet changes, may be evidence of a basic problem with the system — the healthcare system appears to primarily focus on the needs of the healthcare system, when it should be primarily focusing on the needs of patients. And additionally, a troubling side effect of advisories such as this can be seen in the bias displayed against using dietary changes to treat disease, and a continuing failure by researchers to produce the research data needed to validate elimination diets. Clinicians are generally discouraged from prescribing diet changes in general, unless they take all sorts of precautions first, despite the fact that diet changes are probably the safest way to treat any digestive disorder (compared with typical conventional medical interventions). A major hang up in this entire process is the fact that no one wants to finance the needed research to prove the value of elimination diets. Most research is funded by big Pharma, but they're certainly not going to finance research that doesn't require the use of expensive drugs. And with the recent cuts in government funding, there doesn't appear to be much hope that this research will be done anytime soon. References: 1. Starr, M. (2025, June 2). Elimination Diets Call for Caution and Adaptation. Gastroenterology & Endoscopic News, Retrieved from https://www.gastroendonews.com/PRN/Article/05-25/Elimination-diets-GI-disorders/77083 2. Persky, W. (2025, April 1) My Doctor Says I Have an Eating Disorder. Do I? Microscopic Colitis Foundation Newsletter, Retrieved from https://www.microscopiccolitisfoundation.org/uploads/5/8/3/2/58327395/newsletter_april_2025.pdf
2 Comments
12/26/2025 02:10:29 am
Is it posssible to make paid online appointments with you as a Consulting service? I have had Microscopic Colitis for 4 years and have questions. Jill scott
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Wayne
12/26/2025 07:40:29 am
We are a nonprofit, so unlike the rest of the healthcare community, we will be happy to try to answer any of your questions to the best of our knowledge, free of charge. Please email me at:
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