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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.
What is low FODMAP?
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.
What do I need to know about Low FODMAP?
- You must talk to your doctor before starting a new diet, but especially with the low FODMAP diet since it eliminates so many foods — it’s not a diet everyone with NET needs or should follow.
- It’s a temporary diet. Low FODMAP is a three-step elimination diet:
- First, you stop eating certain foods (high FODMAP foods).
- Next, you slowly reintroduce them to see which ones are troublesome.
- Once you identify the foods that cause symptoms, you can avoid or limit them while enjoying everything else worry-free.
- The low FODMAP diet isn’t meant for weight loss, but you can lose weight on it because it eliminates so many foods. For someone at an already too low weight, losing more can be risky.
- You should work with a doctor or dietitian during the temporary period of trial and error, this will ensure food elimination decisions are based on good guidance.
- Low FODMAP may not work for you, your issues may not be related to high levels of FODMAPs although there could be overlaps.
What can I eat on the FODMAP diet?
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:
- Dairy-based milk, yogurt and ice cream
- Wheat-based products such as cereal, bread and crackers
- Beans and lentils
- Some vegetables, such as artichokes, asparagus, onions and garlic
- Some fruits, such as apples, cherries, pears and peaches
Instead, base your meals around low FODMAP foods such as:
- Eggs and meat
- Certain cheeses such as brie, Camembert, cheddar and feta
- Almond milk
- Grains like rice, quinoa and oats
- Vegetables like eggplant, potatoes, tomatoes, cucumbers and zucchini
- Fruits such as grapes, oranges, strawberries, blueberries and pineapple
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.
Low FODMAPs may not work for you
- Some people remain anxious about eating and things in general and this may be leading to abdominal issues such as diarrhea, bloating and gas. Other issues such as lack of sleep may also contribute.
- You need to keep a diary as some high FODMAPs may be inadvertently included in your diet.
- There may be other things unrelated to FODMAPs in your diet.
Working with your doctor/dietition, you may come to the conclusion that your issues are not related to FODMAPs. It’s the jigsaw thing again!
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 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 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.
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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