Thank you Colleen. I’m a newbie and appreciate your patience.
After almost a year of struggle searching for a diagnosis, a carcinoid tumor was located in my small intestine and surgically removed in June, 2021. Although the surgeon believed she “got it all” my symptoms continued unabated. My oncologist now feels I have another tumor(s) and/or residual carcinoid material somewhere in my body. I was started on monthly Lanreotide injections two months ago which reduced my symptoms although I have random flare ups of nausea, flushing and fatigue.
I’m wondering if my flare ups are due to my diet. I’ve read quite a bit about foods not to eat with NETs and it’s a very long list. Unfortunately the online diet advice sometimes conflicts from one website to another. My situation is complicated by the fact that I have longstanding Celiac Disease also so already am on a restrictive diet. I have consulted with nutritionists who basically recommended high calorie foods but often they recommended foods that also appear on the Carcinoid “do not eat” lists.
So I’m wondering how important complying with the Carcinoid do not eat lists really is. If I comply with the do not eat lists and my gluten free diet there is really vey little I can safely eat. I have continually lost weight over the past year (120 down to 98) and can’t seem to gain weight no matter how hard I force myself to eat.
I will appreciate any advice and reports of experience from others who may have similar diet concerns.
Thank you