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Gastrointestinal NET Diets
I have been diagnosed with gastrointestinal NET for 16 months and had surgery for it 15 months ago. I take lanreotide every 28 days and pancrelipase daily. I get very conflicting information on recommended diets from "eat what every you like as long as it doesn't bother you" to "if it tastes good don't eat it." Before NET, I was intolerant of dairy products. That is a limiting factor in a diet. My general health is quite good at the moment except for elevated blood sugars that are below the panic stage. I recently read that raw leafy vegetables should be avoided, that any vegetable containing a seed should be avoided, that dried beans should not be eaten, no nuts, no citrus, no spicy foods, nothing that has ever been fermented, no aged cheese, no vinegar, no avocado or any vegetable in the nightshade family, except potatoes, low fat, nothing fried, no alcohol (especially beer or wine). I don't consume any refined sugar in food or drink. I drink room temperature filtered water almost exclusively. I do not consume soda, or caffein, coffee or tea. My appetite is not very strong, but I eat because I do not want to lose weight. I am a very small person anyway and have managed to actually consistently gain a very small amount all along. I would like to hear from others. I have seen a couple of nutritionists associated with cancer treatment centers, but neither of them have much knowledge about NET.
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Yes, the diet situation for gastroenterology NETs is complicated and made even more complicated if Carcinoid Syndrome is also present and a person follows the Carcinoid Syndrome Diet too.
Here is some nutritional information from the Neuroendocrine Cancer Foundation. https://www.ncf.net/nutrition-resources. There was almost too much of a good informationfor me to absorb alone.
I found it helpful to have a local nutritionist who learns alongside me about the nutritional intricacies: For instance the nutritionist suggested to the oncologist that it would help taking the Creon prescription as needed after the lanreotide shot which has helped .. Also having this particular nutritionist helped me stay on target as well as try out new recipes. Wishing you accompaniment on your exploration and success.
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4 Reactions@maeve115 Thanks again, Maeve, for sharing this nutritional info as you did with me!! I'm finding these sources very helpful in avoiding bloating I've had & wondered why. Still have more to read through & watch. Going to have a lot of questions at my next Dr. visit and asking for a nutritionist who IS knowledgeable about NET diets.
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2 ReactionsJardinera
Good News. I am smiling.. Thank You for letting me know.
I did not have a NET aware nutritionist but she really put a lot of effort into learning and accompanying me...
Here's for settling stomachs !!!
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1 ReactionI have had carcinoid tumors for 23 years and had my ileocecal valve removed. My intestines work well for me but with this diet (all learned through trial and error..)
I eat protein in the form of eggs, chicken, salmon and extremely lean red meat on occasion. I eat toast and bread with nothing on it. I eat broccoli and cauliflower as part of a pasta meal of spaghetti with tomato sauce(Carbone, not Ragu or Prego, you get what you pay for) I avoid all dairy except cottage cheese. I do no sugar, no sodas, no commercial fruit juice drinks, no citrus except tomatoes, do salad of peppers, cucumbers, apples and tomatoes. I do not eat out especially avoid any fast food places—too greasy generally. Occasional peanut butter sandwich. No processed meat like bologna or hot dogs. My drinks are water and a limited amount of coffee although I will have a cappuccino. I do potatoes also. I drink no alcohol—bad,bad. No lettuce or spinach. No spices on anything.
The majority of the volume is the protein and spaghetti.
If it looks like there is not a lot of variety, well there isn’t. But I avoid spending a lot of time in the restrooms having loose stools or worse..
Everyone is different but this works for me.
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4 ReactionsPatrick
Like your attitude .
I too have learned to appreciate the lowering of discomfort from lowering the pleasure of eating as I once did.
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1 ReactionI love " I avoid spending a lot of time in restrooms" as part of what must be a very healthy attitude toward life. Keep it up. I am trying to keep it positive and simple, and advice like yours is greatly appreciated and admired. Thank you very much.
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1 ReactionJerry
This was a helpful podcast for my nutritionist and I:
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