Many people with NET have had issues prior to diagnosis and then continue to have similar issues after. For some it will be either one, i.e. no issues before but issues after or vice versa. However, it’s even possible that some people have will have different issues after diagnosis than they had before, e.g. the side effects of the treatment will produce new problems for those people. In the early days, I once said to my Oncologist “I was never misdiagnosed with irritable bowel syndrome (IBS) but I sometimes feel like I have it now“.
IBS is said to affect up to 1 in 7 of the ‘western’ population in varying degrees of severity with the symptoms of abdominal pain and abnormal bowel habits (constipation, diarrhea or a mixture of both) which are key features. Other symptoms may also be present including bloating, distension, excessive gas, urgency to defecate.
From what I see in my private group, many people have “IBS like” symptoms which some might accurately and diagnostically describe as IBS. It’s even possible that some people had IBS prior to diagnosis and that it was masking a NET leading to diagnostic delays. Often a change of diet can help those with IBS, and this has been touted as a possibilty for those with similar symptoms and are diagnosed with NET A low FODMAP diet is very often recommended as the first treatment choice for people with IBS.
A diet low in Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols – you can see why FODMAPs is so much easier to say. It is often used to manage functional gastrointestinal symptoms in patients with irritable bowel syndrome (IBS). I also found that other abdominal issues have been added to the list of conditions for which the Low FODMAP diet might help, e.g. small intestinal bacterial overgrowth (SIBO), something I’ve written about before linked to small intestine NETs post-surgery. but there is limited evidence of its efficacy, compared with a normal Western diet.
I did find a few small studies indicating some efficacy in reducing the symptoms above. The low FODMAP diet is part of the therapy for those with IBS and SIBO. Some research has found that it reduces these symptoms in up to 86% of people.
Foods that trigger symptoms vary from person to person.
To ease symptoms listed above, it’s essential to avoid high FODMAP foods that aggravate the gut, including:
Instead, base your meals around low FODMAP foods such as:
Get a full list of FODMAP food from your doctor or nutritionist.
Warning: you may need to use a tailored version of this list given the impact of certain things you’ve been advised to do previously, and this emphasises the need to seek out professional advice before and during any use of this diet. Keeping a diary becomes even more important.
e.g. if you’ve had bowel surgery, you may be avoiding high residue foods while the bowel heals.
e.g. you may be fructose intolerant.
e,g, e.g. you may be lactose intolerant.
e.g. if you have severe carcinoid syndrome, you may have been told to avoid high amine foods.
e.g. if you have diabetes, you may already be restricting certain foods.
Authors note: Cross referencing foods to avoid or eat may be easier than you think as I can already see overlaps with fructose/lactose and FODMAP. In fact, when you read the History of the Low FODMAP diet below at Reference 3, you can see the overlaps with fructose and lactose intolerance.
Other reading (note – none of this should be considered medical advice).
Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietician. This blog provides a list of vitamins and minerals that NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.
Article 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.
Article 3 – ‘Gut Health’. This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discusses probiotics. Input from Tara Whyand.
Article 4 – Food for Thought (Amines). This is a blog about why certain types of foods or particular foodstuffs can cause issues.
Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients. Input from Tara Whyand.
Article 6 – ‘Tara Whyand Video Series‘. A number of fantastic short video coverng a wide range of diet and nutrition issues experienced by NET patients.
Read a Gut Surgery Diet Booklet authored by Tara – Click here
You may also appreciate these articles where there is overlap:
The Diarrhea Jigsaw – different things can cause diarrhea, it’s not all about syndromes.
The Constipated NET Patient – yes they exist!
Very grateful to Tara Whyand for her input.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Thanks for reading.
Blog Facebook. Like this page please.
Personal Facebook. Like this page please.
Awareness Facebook Like this page please.
Follow me on X (formerly twitter)
Check out my online presentations
Check out my WEGO Health Awards
Before you read this This information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors
Before you read thisThis information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might
Summary of July 2026 on RonnyAllan.NET July was similar to the other months of this year but views down on the previous two months due
I finally made 16 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help […]
Intro Cushing’s syndrome is one of the most challenging hormonal complications seen in people with neuroendocrine neoplasms (NENs). It can be subtle, severe, or even
Today, 14th July 2026, I can confirm the 3 million views milestone has been reached. MASSIVE THANKS to you guys for reading and sharing.
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect
Disclaimer: This Spotlight provides general educational information about Iron. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions
Headline – half yearly point bonus edition Summary of June 2026 on RonnyAllan.NET June was similar to the other months of this year but slightly down on
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Subscribe to get the latest posts sent to your email.
