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Beatie
Wishing you well with your search. I have carcinoid syndrome so I asked to work with a nutritionist, who learned alongside me, about nutrition to help with Carcinoid Syndrome Symptoms. Lanreotide helped and learning to balance the Lanreotide with the prescribed Creon also helped. I also take rescue Ochtreatide as needed especially at the end of the month.
In addition to a Carcinoid Syndrome Diet which worked for me we checked for Niacin Deficiency (Vitamin B3) learning about avoiding amine triggers and Diarrhea and Fat Malabsorption.
We worked on customized meal planning and maintaining. nutrient levels,
Carcinoid Cancer Foundation has a free booklet which was a good start and other nutrition resources.
https://www.ncf.net/nutrition-resources
Not easy but well worth the lessening of bathroom visits.. Hopefully, you will find some help.

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Replies to "Beatie Wishing you well with your search. I have carcinoid syndrome so I asked to work..."

Thank You

@maeve115 Thanks for this link resource! I am on Octreotide for my NET's and have problems with bad constipation if I don't eat things like prunes, ground flaxseed on my oatmeal, and Miralax daily. Heavy fats (like KFC chicken or too many nuts) cause bad bloating, so I'm staying away. My bilirubin levels are always high on testing.....any connection?
I see some others have problems with diarrhea, the exact opposite. Very interesting. I'm looking for more ideas on preventing "slow gut motility" and bloating.
Thanks!