This is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It’s also worth pointing out that malabsorption issues can be caused by other reasons unrelated to NETs. Additionally, malabsorption and nutrient deficiency issues can form part of the presenting symptoms which eventually lead to a diagnosis of Neuroendocrine Cancer; e.g. in my own case, I was initially diagnosed with Iron Deficiency Anemia in association with some weight loss. Even after diagnosis, these issues still need to be carefully monitored as they can manifest as part of the consequences of having cancer and cancer treatment.
Malabsorption will present via several symptoms which may be similar to other issues (i.e. they could masquerade as, or appear to worsen the effect of a NET Syndrome). These symptoms may include (but are not limited to) tiredness/fatigue/lethargy, stomach cramps, diarrhea, steatorrhea (see below), weight loss. Some of these symptoms could be a direct result of nutrient deficiencies caused by malabsorption. Some patients (and perhaps physicians?) could mistake these for symptoms of Neuroendocrine disease including certain syndromes, perhaps leading to prescribing expensive and unnecessary drugs when a different (and cheaper) strategy might be better.
Crash Course……. We eat food, but our digestive system doesn’t absorb food, it absorbs nutrients. Food has to be broken down from things like steak and broccoli into its nutrient pieces: amino acids (from proteins), fatty acids and cholesterol (from fats), and simple sugars (from carbohydrates), as well as vitamins, minerals, and a variety of other plant and animal compounds. Digestive enzymes, primarily produced in the pancreas and small intestine (they’re also made in saliva glands and the stomach), break down our food into nutrients so that our bodies can absorb them. If we don’t have enough digestive enzymes, we can’t break down our food—which means even though we’re eating well, we aren’t absorbing all that good nutrition.
What is malabsorption?
The malabsorption associated with Neuroendocrine Cancer is most prevalent with the inability to digest fat properly which can lead to steatorrhea. Patients will recognise this in their stools. They may be floating, foul-smelling and greasy (oily) and frothy looking. Many patients confuse steatorrhea with diarrhea but technically it’s a different issue although both issues may present concurrently. Whilst we all need some fat in our diets (e.g. for energy), if a patient is not absorbing fat, it ends up being wasted in their stools, and in addition to the steatorrhea, it can also potentially lead to (unwanted) weight loss and micronutrient deficiencies of the fat-soluble vitamins A, D, E and K. Certain water-soluble vitamins, particularly B3 and B12, are also at risk. Many NET Patients are prescribed a supplement of pancreatic enzymes to combat these issues – see Article 5 in this series – Pancreatic Enzyme Replacement Therapy (PERT).
What causes it with NET Patients?
Structural Changes (i.e. Surgery)
This can play a very big part in malabsorption issues. For example, if a patient has undergone Pancreatic surgery, this will potentially have an effect on the availability of pancreatic (digestive) enzymes needed to break down food. Many Small Intestine NET (SI NET) patients will suffer due to the removal of sections of their ileum, an area where absorption of water-soluble vitamins and other nutrients takes place. In fact, the terminal ileum is really the only place where B12 is efficiently absorbed. Low B12 is known to cause fatigue. Some patients with Gastric tumours succumb to pernicious anemia with the most common cause being the loss of stomach cells that make intrinsic factor. Intrinsic factor helps the body absorb vitamin B12 in the intestine. Although a less common tumour location, jejunum surgery could result in loss of nutrients as this section of the small intestine is active in digestive processes. Malabsorption issues for SI NETs are an added complication to the issues caused by a shorter bowel (e.g. faster transit time), something which is regularly assumed to be the effects of one of the NET Syndromes (particularly diarrhea and fatigue), when in actual fact, it’s a simple consequence of cancer treatment and may need a different treatment regime.
Evidence of the problems being caused by the effects of small intestinal surgery can be found in a recently published Swedish study which you can read here: Click here. This particular study recommends supplementation of B12 and D3 for those affected. If you’re having trouble getting your physician to monitor your vitamin levels, show them these studies. I get these vitamins checked annually.
The Gallbladder and Liver
The Gallbladder plays an important part in the digestive system – particularly in fat breakdown. The liver continually manufactures bile, which travels to the gallbladder where it is stored and concentrated. Bile helps to digest fat and the gallbladder automatically secretes a lot of bile into the small intestine after a fatty meal. However, when the gallbladder is removed, the storage of bile is no longer possible and to a certain extent, neither is the ‘on demand automation’. This results in the bile being constantly delivered/trickled into the small intestine making the digestion of fat less efficient. One of the key side effects of Somatostatin Analogues (Octreotide and Lanreotide) is the formation of gall stones and many Neuroendocrine Cancer patients have their gallbladder removed to offset the risk of succumbing to these issues downstream. However, the removal of the gallbladder increases the risk of Bile Acid Malabsorption (BAM) as described below. Any issues with Bile Ducts can also have a similar effect.
The Liver has multiple functions including the production of bile as stated above. However, one of its key functions within the digestive system is to process the nutrients absorbed from the small intestine. If this process is affected by disease, it can potentially worsen the issues outlined above.
Bile Acids Malabsorption
Another risk created by the lack of terminal ileum is Bile Acids Malabsorption (BAM) (sometimes known as Bile Salts Malabsorption and some texts described the resultant diarrhea as ‘Bile Acid Diarrhea”). Bile Acids are produced in the liver and have major roles in the absorption of lipids in the small intestine. Following a terminal ileum resection which includes a right hemicolectomy, there is a risk that excess Bile Acids will leak into the large intestine (colon) via the anastomosis (the new joint between small and large intestines). This leakage can lead to increased motility, shortening the colonic transit time, and so producing watery diarrhea (or exacerbating an existing condition).
Somatostatin Analogues can also impact (or worsen) the ability to digest fat as they inhibit the production of pancreatic digestive enzymes (amongst other things). This is a well-known side effect of both Octreotide and Lanreotide. The levels of the fat-soluble vitamins (ADEK) and B vitamins such as B12, need to be monitored through testing and/or in reaction to symptoms of malabsorption. If necessary, these issues need to be offset with the use of supplements as directed by your dietician or doctor. Supplements are less affected by malabsorption of nutrients, but their efficiency can be impacted by fast gut transit times (thus why testing is important). The evidence and recommendations for malabsorption caused by somatostatin analogues is here: Click Here.
Deficiencies of these vitamins and certain minerals can lead to other conditions/comorbidities, some more serious than others. For a list of the vitamins and minerals most at risk for Neuroendocrine Cancer patients, have a read of my article which was co-authored by Tara Whyand – Vitamin and Mineral deficiency risks.
There is a third article in this series discussing a related issue with Neuroendocrine Cancer, particularly where gut surgery has been performed. You can link directly to this article here – “Gut Health“ – (Gut Health, Probiotics and Small Intestinal Bacterial Overgrowth (SIBO)).
The fourth article looks at Amines and why they can cause food reactions or exacerbate syndromes.
Many people also confuse steatorrhea with diarrhea (although these issues can appear simultaneously), again leading to wrong conclusions about the causes and effects, and worryingly, the treatment required. Check out my diarrhea article – click here.
Article 5 in this series looks at how to combat malabsorption caused by pancreatic insufficiency – Pancreatic Enzyme Replacement Therapy (PERT)
Nutrition Article 6 – ‘Tara Whyand Video Series‘. A number of fantastic short video covering a wide range of diet and nutrition issues experienced by NET patients. click here
My article ‘The Diarrhea Jigsaw‘ is complementary to this nutrition series.
Read a Gut Surgery Diet Booklet authored by Tara – CLICK HERE
A common problem in patients and from what I see, many just assume this is part of their various syndromes leading to the wrong therapy or no therapy as it’s simply ignored. Again, I remain very grateful to Tara Whyand for some assistance.
This is a big and complex subject and I only intended to cover the basics. Everyone is different and nothing in here should be accepted as medical advice for you or anyone you know. If you need professional advice, you should speak to your doctor or registered dietitian.
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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20 thoughts on “Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption”
Hello my husband was just diagnosed with neuroendocrine cancer as well see when we first found out he has a stomach flu like symptoms
ha had some heartburn symptoms as well
he is having octriotide injection monthly only but he is in so much pain I don’t know if we are doing something wrong we have asked for a diet or foods he can have and we have gotten no response please help
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Thanks again Ronny. I refer others to your site to learn about the disease. In addition to malabsorption of fats, in the last few months I have become violently reactive to lactose 🙄. The literature I’ve seen is spotty where this is concerned however i feel like it is somewhat compatible with the observations you’ve made here. Thanks again!
I would like to get in touch with you
Feel free to message me here https://www.facebook.com/NETCancerBlog/
I am seeing Tara and Prof Caplin. I have no gall bladder and bad stetorreah which is now being treated with Nutrizym. I am on sandostatin Lar monthly and the treatment is not working. I am so not hungry that I am
losing weight. I am now on CapTem.
Quality of life has reduced not a happy
person now. I have 8 years of intensive
Treatment. This includes massive 12hour liver op at the RF London.
Lung resection, PRRT 9 times plus ablutions, embolisations, cyber knife ( useless) etc etc
Almost feel I have had enough. And now they are talking about immunotherapy.
Just wondering what your thoughts are re all the above.
Thank you for all you have written. You have helped me many times.
Dear Katherine, you have had so much treatment. Not sure I can compete with Prof Caplin! Can I ask what Stage and Grade your tumours are? Presumably you’re a Lung NET?
My poor husband has had two surgeries in the last 3 months resulting in having about 12 feet of his small intestine removed (his primary NET was in the terminal ileum). The doctor suggested putting him on a multi-vitamin, but I’m still worried that he’s suffering from malabsorbtion (he has lots of fatigue and diarrhea). I hope we are able to figure out something to do for him 😦
Sorry to hear Jillian. 2 surgeries in 3 months is a bummer. However, this is a fairly standard issue with small intestinal NETs and it’s important to get nutrition guidance from day 1. Firstly, it will take a while for his system to get back to normal. Ask for a B12 and Vit D blood test and use that as a baseline to monitor, suggest annually to start with. The terminal ileum is a big place for absorption of B12. Low B12 will cause fatigue. The diarrhoea is probably the surgery effects. I would say yes on a multi vitamin. I take an over 50 multi PLUS a B Vit complex. And others. Read my whole series of nutrition posts and my Diarrhea post
So very helpful!! Thank you so much!! This is me to a tee!
Thank you so much for your time and information. It is appreciated more than you will ever know.
My pleasure 😀
Ah yes, hubs had had his gallbladder out some time ago. The issues this caused with bile acid malabsorbption masked some of the NET symptoms. Post right hemicolectomy the issues were very bad, to the point of usong the toilet 30+ times a day. After speaking with family, my cousin had had similar surgery but hers was due to Crohns, I found the Crohns forums useful and the doctors prescribed Questran. One sachet a day gave him a new found freedom he hadn’t had for many years, suddenly he was able to go on picnics, eat out on a day trip, simple things he had missed out on for years since the gallbladder removal.
yes, it’s all problematic and this particular problem is only a bit of it! Yes I mentioned bile acid sequestrants in the blog and Questran is one brand of this type of medicine. I also remember me phoning my surgeon after my surgery and saying “I know you said it would take a while for my system to get back to normal but 20 times a day is not good!” Things are a lot better now!
Outstanding piece! It is concise and to the point and very factual. kudo for your post!
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