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Ronny Allan
reviewed and updated 12th Feb 2022
Background.
Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients.
When I started writing my nutrition series (I listed the other parts below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it’s very individual and what works for one may not work for another.
I like to focus on why such things might have an effect – patients can then experiment and see what works for them. Sometimes very few changes are required and settling on a diet that works for you is the optimum solution. p.s. Not everyone has so-called carcinoid syndrome, not everyone will even get carcinoid syndrome – chant it 3 times!
NET patients may have multiple problems and issues (including the effects of eating) which people may be relating to their cancer or the effects of a particular syndrome or treatment (working that out can be difficult!). Even if I link you to an authoritative site, it will most likely only show ‘General Guidelines’, since patients with NETs should really be assessed on a case-by-case basis. However, I can say that from personal experience, guidelines are a good base to start in understanding the issue. You should always seek professional advice from a reliable ‘NETs aware’ dietitian who will be able to help you determine what your nutritional needs are and tailor them for your particular situation. Be wary of the internet on diet and nutrition, there is much ‘quackery’ out there and normally they just want to sell something regardless of whether it’s good for you or not. Unfortunately, Fake healthcare news is big business. You may also enjoy article 2 and article 3 of this series on internet dangers.
Article Scope
In this article, I want to cover the ‘knotty’ problem of what is in food that might be provoking a reaction and why. The other thing I would emphasise is that the cause of ‘provocation’ might not just be from what you have eaten, but how much. Moreover, it can be difficult to ascertain if the cause is syndromic, due to treatment, is caused by comorbidity, or simply due to a sensitivity to a particular amine …… yes, even NET patients can have regular problems! In fact, when I checked food allergy studies, I found that an estimated 10% of the general population has a food allergy issue in varying levels of severity. As this is considerably more prevalent than Neuroendocrine Cancer, it follows that in many NET patients, much of it is a pre-existing condition.
But clearly if you suddenly develop food allergy issues as part of your NET journey, then it may be that NET issues are having some effect. And it’s not just a pre-diagnostic or diagnostic phase, it’s something that may be caused by treatment beyond your diagnosis.
A high level of serotonin is something people might be looking to avoid due to its relationship with midgut NETs and in particular those with Carcinoid Syndrome. But it’s not all about serotonin and carcinoid syndrome. One thing I noticed is that experienced dietitians are not saying you must totally avoid foods associated with serotonin. I say “associated” because serotonin is not found in foods (another NET myth), it is manufactured from amines in food. The only time dietitians would recommend staying totally away from these foods is before and during a 5HIAA urine test (5HIAA is a by-product of serotonin) as this could skew the results. Experienced NET dietitians will also tell you that amines in foods containing the precursor to Serotonin will not affect tumour growth.
And it’s not all about diarrhea as you will see below – it’s also about digesting the food to maximize the nutrients in it. Even diarrhea is not necessarily caused by so-called “carcinoid syndrome” (e.g. oversecreting serotonin). For example, if you’ve had classic small intestinal NET surgery, you’re likely to be missing a few feet of the small intestine and potentially your ascending colon and all that goes with that (i.e. you’ve had a right hemicolectomy). It follows that your food might transit quicker than normal on its journey from mouth to the toilet. There are no doubt other issues that might cause you to ‘move quickly’ or some other effect; and many of these issues will have been covered in my Nutrition Series Articles 1, 2, 3, 5, and 6 (see below).
Amine Primer
This is a complex subject and consequently, the answers inside patient groups are often out of context including the use of blanket statements as if it applies to everyone (it doesn’t). I am compiling a short primer so at least some of the terminology will be familiar to aid context.
Amino Acids
Amino – relating to, being, or containing an amine group. Amino acids are molecules that combine to form proteins. Amino acids and proteins are the building blocks of life. When proteins are digested or broken down, amino acids are left. The human body uses amino acids to make proteins which help the body (amongst other tasks) digest foods. Amino acids can also be used as a source of energy by the body. Amino acids are classified into three groups:
- Essential amino acids – cannot be made by the body. As a result, they must come from food, e.g. serotonin.
- Nonessential amino acids – our bodies can produce the amino acids, even if we do not get it from the food we eat.
- Conditional amino acids – usually not essential, except in times of illness and stress.
Biogenic Amines – also known as Vasoactive or Pressor Amines – the NET effect
Some amines are also neurotransmitters, such as the established biogenic amine neurotransmitters, they are the three catecholamines—dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline)— but also histamine and serotonin. Only histamine is found in foods. The others are generated by other sources, for example, serotonin is converted from tryptophan which is an essential amino acid (see amino acid info below).
Vasoactive is a keyword that explains the reactions some people might have when they already have raised levels of particular hormones such as catecholamines (normally pheochromocytoma/paraganglioma), serotonin (mostly midgut), and histamine (mostly foregut including lung).
Pressor amines are those which can raise your blood pressure, care should be taken where you already suffer from elevated blood pressure (hypertension). Again, this is a common side effect of those with catecholamine secreting NETs (i.e. pheochromocytoma/paraganglioma).
The effect of biogenic/vasoactive/pressor amines in ‘aged food‘. These amines are produced by bacteria during fermentation, storage, or food decay. They include beta-phenylethylamine, tyramine, tryptamine, putrescine, cadaverine, spermine, and spermidine, but histamine is most frequently linked to food-related symptoms.
Some biogenic amines are also hormones – it’s complicated!
When you read the amine primer above, it’s clear this is not just a serotonin problem – it is actually a much wider issue when you consider ‘vasoactive amines’ and ‘pressor amines’. They are precursors for catecholamines such as adrenaline, which trigger some NETs to secrete vasoactive substances, which cause symptoms or in extreme cases, hormonal crisis. Tyramine is the most active of these amines. Other strongly active vasoactive amines found in food include histamine which can cause strong dilation of capillaries, and also cause hypertensive crisis. Reported reactions from these vasoactive amines are acute hypertension, headache, palpitations, tachycardia, flushing, and in extreme cases, unconsciousness. As a general rule, tyramine and other pressor amines are usually only present in aged, fermented, spoiled protein products.
What are the trigger foods for those with ‘carcinoid syndrome’?
Most frequently reported trigger foods or habits include:
- Eating larger meals
- Eating high-fat meals
- Drinking alcohol
- Eating very spicy foods
- Eating raw tomatoes
- Eating foods with a high or moderate number of amines (see table).
……………..But let’s be clear on this, even people without NETs can have issues consuming such things, many people are sensitive to amines, it isn’t always about the NET or one of the NET syndromes.This abbreviated list should be OK for most.
| Foods High in Amines | Foods Moderate in Amines |
|
|
General Nutrition Tips for Symptomatic Carcinoid Syndrome:
- Eat 4 to 6 smaller meals, instead of 3 larger meals
- Choose a diet higher in protein
- Best choices include: fresh fish, chicken, turkey, lean beef; beans and lentils; eggs; low-fat dairy like milk, yogurt, cottage cheese – watch a 10-minute video from world-renowned NET dietitian Tara Whyand talking about the importance of protein for NET patients – click here.
- Reduce your fat intake
- Choose the healthiest fats, including extra virgin olive oil, nuts, seeds (if tolerable)
- Cook vegetables for improved digestibility
- To minimize exacerbating diarrhea, limit or avoid wheat bran and foods made with wheat bran, prunes, dried fruits, and popcorn
- Experiment with foods that are lower in amines (see table)
| Foods Lower in Amines |
|
Keeping a food and symptom diary may be helpful. Record your daily food and drink consumption and any symptoms that you experience. You may start to notice a pattern.
One thing I would say to people is that the amines issue is quite relevant if you have an over-secreting NET where certain amines including vasoactive and pressor kind might cause reactions. In actual fact these reactions to these types of foods are not limited to NETs, anyone can have this type of reaction if eating too much of them. The issue can be exacerbated in NET patients who have highly elevated levels of (say) serotonin with carcinoid syndrome, and with certain other hormonal syndromes such as catecholamine secreting Pheochromocytoma/ Paraganglioma. As Pamela emphasises in her excellent sheet above, everyone is different, e.g. I happily and regularly eat bananas and wholemeal cereal with no issues whatsoever!
Low/High Residue – is that the same as amines?
For those who are experiencing digestive issues, are non-syndromic but who have had surgery and /or other therapies, amines might be less of an issue (other than when being tested for 5HIAA) and you may need more focus on other dietary guidance, e.g. if you have had bowel surgery, low and high ‘residue’ foodstuffs (i.e. essentially easy to digest, normal correlates to low and high fibre) may be something to prescribe but they are normally only a temporary solution allowing the bowel to heal gently.
My own experience
Personally, I cannot think of a single food that causes me to have a ‘reaction’ other than if I eat too much or eat something with high-fat content. Basically, for someone who has had abdominal surgery including terminal ileum and gallbladder removal, the system cannot cope for one reason or more – see Series Article 2. It’s important to distinguish this type of reaction which is actually something caused by the consequences of cancer treatment rather than one of the ‘syndrome’ effects. The answer might simply be to reduce or adjust food intake rather than cut foods out, particularly foods that you may need for nutrition and energy. And of course, foods you enjoy which don’t cause intolerable issues are related to the quality of life.
What I do know from masses of experimentation and running a diary, is that large meals can give me issues. However, as hinted above, I put that down to surgery – NOT syndrome. I also reduced consumption of fatty foods but that was mainly to combat malabsorption caused by my surgery and exacerbated by Somatostatin Analogues. Again, NOT syndrome. I reduced alcohol but mainly because I was concerned about my compromised liver after surgery.
Other useful links which have an association with this blog:
{a} Read a Gut Surgery Diet Booklet authored by Tara – click here
For a more comprehensive list of amines, check out the Amine information source built by NET Patient Pamela Poulson – scroll down to see it
For a more comprehensive list of amines, check out this leaflet built by NET Patient Pamela Poulson 
Disclaimer
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 as they are not members of the private group or followers of my sites in any official capacity. 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.
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Having read your blogs on nutrition Ronny I would like to ask a question, as I cannot find an answer in your blogs – I have Type 1, Grade1 Gastric NETs on a background of pernicious anaemia (inc’ loss of parietal cells causing an inability to make intrinsic factor), and chronic atrophic gastritis, accompanied by hypergastrinemia, low volume acid and high chromogranin levels. I have not had any resection and am on yearly to 18 monthly endoscopy surveillance – I have not had any scans, I am not assigned to a MDT, nor do I have a point of contact to ask any questions of. So, my question here is:-
as it is highly likely that my stomach has impaired functionality, do you have any advice/information/research guidance etc that might help me to improve my gut health and function.
Thanks for all the interesting and informative articles and the work you do.
too wide and complex for me to answer! If you ask that in my group, I can tag in a friendly dietitian
Thanks Ronny, will do.
[…] A truly informative resource for nutrition and NET cancer is a series written by Ronny Allan, a patient advocate who writes one of the most comprehensive blogs about NET cancer. Check it out! Ronny Allan’s Blog Series about Neuroendocrine Cancer Nutrition […]
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