Why Doesn’t Guts UK Charity Tell IBS-D Patients About Enterosgel?

Elena Markaryan — CEO, Enteromed Ltd  ·  April 2026  ·  7 min read

In 2022, a landmark NHS clinical trial proved that Enterosgel relieves IBS-D symptoms in 76% of patients. The study was published in GUT journal, endorsed by leading NHS gastroenterologists, listed on the NHS Drug Tariff, and recommended as first-line therapy in The Lancet. We took this evidence to Guts UK — the UK’s national digestive health charity — in July 2022. Their IBS patient information page, updated as recently as June 2025, still does not mention it. This is the story of that evidence, and why every IBS-D sufferer in the UK deserves to know it exists.

We set out to answer a question millions of patients were asking

IBS with diarrhoea — IBS-D — is one of the most debilitating and underserved conditions in the UK. Patients describe planning every journey around toilet access, being unable to travel, losing their jobs, and withdrawing from social life entirely. The quality of life impact is severe. Research has shown that up to 30% of patients with serious IBS-D experience suicidal ideation related to their condition. Yet treatment options have remained limited and largely unchanged for decades.

At Enteromed, we believed there was a better option. Enterosgel — an oral intestinal adsorbent, drug-free and CE-certified — had shown early promise, but what was needed was rigorous Level 1 clinical evidence: a large, double-blind, randomised, placebo-controlled multicentre trial. We sponsored exactly that. Working with leading NHS gastroenterologists and clinical research teams across 28 NHS sites in England — GP practices, hospital outpatient departments, and specialist centres — we ran the RELIEVE IBS-D study over several years, through a pandemic, and against significant logistical challenge.

The results, when they came, were extraordinary. In June 2022 they were published in GUT, the world’s leading gastroenterology journal. GUT named RELIEVE IBS-D one of its top 10 studies of the year. The findings were also presented at Digestive Disease Week 2022 in San Diego, the world’s largest annual gastroenterology meeting. Within 18 months, the NHS added Enterosgel to its Drug Tariff. By 2024, a landmark paper in The Lancet Gastroenterology and Hepatology was recommending Enterosgel as a first-line treatment for IBS patients where diarrhoea and urgency are the main symptoms.

We were proud. We wanted every IBS-D patient in the UK to know this treatment existed. We wanted to shout about it. And so, naturally, we turned to the charity that exists precisely to tell them.

We contacted Guts UK. Three times.

Guts UK is the UK’s national charity for the digestive system. Their stated mission is to fund research and to provide expert, evidence-based patient information about digestive conditions. Millions of people with gut conditions trust them. Many donate to them in exactly this hope — that the charity is working to ensure patients know about every credible treatment available.

We first reached out to Guts UK in July 2022 — within weeks of the GUT publication. We pointed out that their IBS information pages contained no mention of Enterosgel or intestinal adsorbents, and asked to meet with their editorial team to share the research. We received no substantive reply.

We tried again. In November 2023 — sixteen months later — we contacted Guts UK again. We noted that the IBS Network had already updated their patient information to include Enterosgel. We noted that the NHS had listed Enterosgel on the Drug Tariff. We offered to connect them with the Chief Investigator, Professor Yan Yiannakou, and with Professor Peter Whorwell — one of the world’s foremost IBS researchers, whose own work appears on Guts UK’s website. We offered to share patient testimonials. We asked, plainly: when do you plan to update your IBS information?

We received two responses. From their Information Manager, an acknowledgement that our request was “in her folder” and that she would consider it when the IBS page was next updated. No timeline was given. From the CEO of Guts UK, a more considered reply — which included the following:

We respected that response. Charities make choices about their partnerships and collaborations. But the question we were not asking about partnership — we were asking about patient information. We were asking whether people with IBS-D would be told that a clinically validated, NHS-prescribable, drug-free treatment existed. Those are not the same question.

There is one further detail worth noting. In June 2025 — the same month their IBS patient information page was updated — Guts UK published the winning entry for their Medical Student Prize on their own website. The project, conducted by Symriti Kaur-Paneser at Imperial College London under the supervision of consultant colorectal surgeon Miss Emma Carrington, investigated the adsorption capacity of Enterosgel for inflammatory cytokines, enzymes, and drugs relevant to ulcerative colitis. In her own words, published by Guts UK: Enterosgel “has shown efficacy in reducing urgency in patients with diarrhoea-predominant irritable bowel syndrome (IBS-D).” Guts UK awarded this work a prize. They published it on their website. And on that same website, in that same month, their IBS patient information page was updated — with no mention of Enterosgel whatsoever. The knowledge was there. The evidence was there. The patients were not told.

What the world’s leading authorities have concluded

From trial registration to three years of silence

Trust is the only currency a patient information charity has

People with IBS-D turn to Guts UK because they trust them. They donate to Guts UK because they believe the charity is working on their behalf — finding treatments, funding research, and ensuring that when something new and effective is proven, their members hear about it. Many of them have no idea that the information they are reading may not reflect the current state of evidence.

Guts UK does important work. They fund medical research. They support people with serious digestive conditions. This post is not about undermining that. It is about one specific, documented, factual gap: a treatment that has been validated in a 440-patient NHS trial, published in GUT journal, listed on the NHS Drug Tariff, and recommended in The Lancet — that their IBS-D members still do not know about. And that they were told about in writing, with the evidence, in 2022.

We do not know why Guts UK has chosen not to include Enterosgel in their IBS patient information. We are not claiming to know. What we do know is that the evidence exists, that it meets the highest standards, and that patients deserve access to it — regardless of which organisation provides it.

If you have IBS-D, you do not have to wait for a charity’s website to catch up. You can ask your GP about Enterosgel today. It is available on NHS prescription and over the counter at Boots, pharmacies across the UK, and at enteromed.co.uk.