Hello @mwalum and welcome to Mayo Clinic Connect's NETs discussion group. I can empathize with you because I have had three surgeries for NETs in the duodenal bulb. My appetite is not what it used to be and I manage to keep my weight around 112, but when it falls below that I do get concerned. I can see that Celiac Disease also complicates the eating process and it makes it hard to get enough calories from carbs. I try to follow a Fodmap diet which is somewhat similar to the diet for Celiac Disease.

The Carcinoid Cancer Foundation has produced many interactive videos as well as Q & A sessions that discuss diet. Here is a link to those discussions, https://www.carcinoid.org/?s=diet.

I would also like to invite you to Mayo Clinic's NETs online support group which meets virtually on the first Thursday of each month, via Zoom. It originates from the Jacksonville Mayo Clinic Campus and is facilitated by a Mayo Clinic social worker, Michelle Walsh, @michellewalsh. This group has guest speakers every other month and then on the in-between months, there is a group session where you can ask questions of others who are dealing with NETs. You might find this a good place to get your questions answered and get some help. The week before the meetings there is usually a meeting notice/invitation posted on Connect where you can register for the meeting and you will then be sent the Zoom link.

I have not had carcinoid syndrome so I have never taken Laneotride injections. I am glad to hear that they have helped with some of your symptoms.

You say that you have met with nutritionists. Are these registered dieticians at a hospital?

Are you familiar with Boost Breeze? It is a nutritional drink that can be purchased online. It is a clear drink and comes in different fruit flavors. One member has used it and she said that the peach flavor is the best for her. It is considered gluten-free but it does contain milk.

You also said that your oncologist suspects that there may be another NET. Has a Gallium scan been done to look for other NETs?