Hi!
Thank you ❤️so much for all your reply’s. A lot of your questions and comments were similar, so I just thought I might post a reply here. I’m going to include as much info possible-so kind of using short hand.
I have been suffering since about 2012, possibly earlier. So many doctors, so many telling me I was deluded. Hysterical. Awful and traumatizing, PTSD every time I have to see a new Dr.

Referred to Mayo twice for suspected carcinoid. 5-HIAA positive, high CgA, high gastrin but I couldn’t afford to make another trip. Had multiple endoscopy’s, gallium PET scans. Capsule endoscopy.
Severe ulcers in stomach, but also on small intestines.
Always High to very high Gastrin and CgA that fluctuate in tandem. Mind bending nausea, and indescribable acid pain in abdomen. I’m constantly regurgitating mouth fulls of gross. Diarrhea is intermittently bad, but nausea and pain are worse.

PET’s/endoscopy’s reveal no tumor. However, my last two PET scans showed definitive uptake throughout stomach. Just no hot spots.
I do see a neuroendocrine oncologist at Univ. of Chicago, Dr Polite.
I do take PPI’s and am aware it can raise gastrin and CgA, though usually not so high. Also, they were high before starting on PPI’s.
Otreotide every three weeks for about 5 years-daily injections of fast acting otreotide-but once again feels like it is becoming less effective and I’m maxed out on otreotide.
I’ve lost over 30 pounds unintentionally in the last year or so, ( but I’m not going to lie, I don’t want to gain them back, lol)

I cannot begin to thank you for taking the time to read this post. Not finding the tumor or gastronoma pulls the rug right from under my feat ever time. Like I don’t deserve to be here. Yes, haha, I do have a therapist 😂
Gratefully, Rose