Hi, I was diagnosed when I was 28 or 29. I'm 34 now.. Dr. Murray and Dr. Garg at Mayo Rochester have been the only doctors who have been able to help at all. I too can only eat tiny portions of food without feeling like I'm going to vomit or, will ultimately just vomit. Dairy, red meat, sugar, and carbs do not agree with me. I also tend to stick to small portions of chicken, fish and steamed veggies. They found that I have zero acid in my stomach, making it difficult to break any of the food down. I am always extremely exhausted, which is difficult with family and intense work obligations (which everyone can relate to). I'm also a distance runner, and I find it difficult to get adequate nutrition to fuel me for long runs.
On my week-long visit at mayo I was put on 2 different laxatives, due to stool overflow, prednisone, and something to get rid of the excess bacteria in my stomach (since my stomach has no acid, there is bacteria). I was also given an endoscopy, and a camera was inserted into my bloodstream that traveled to my stomach and took pictures-- which I thought was pretty innovative technology! Anyway, I was doing much better for about 2 months.. I was not vomiting and very little pain. And within the last month, my stomach has almost reverted, which is so disheartening. The only thing I'm able to keep down are scramble eggs. And I can only eat so many scramble eggs... I'm reading through everyone's recommendations, and going to try any diet changes that have worked for others. I really appreciate everyone's input.
My heart goes out to all of you dealing with this rare, ambiguous disease, and I hope you find the answers you need to feel better.
@jdav I am so sorry that you are going through so much. My 24 year old son was diagnosed last summer. We spent 12 days in Mayo, Mn. in Feb this year. While we got answers and are trying everything( and love Dr. Murray and Dr. Cartee), we are looking at disability for him. Every food makes him sick so he eats extremely small portions. He takes zofran daily and lives in the br. The disease and what it brings with it make him exhausted and I imagine depressed although he tries. He has odd issues as well but I believe related: joint pain, boils, jaw pain(grinding from pain maybe), shoulder pain, neck and back, chest pain and of course stomach...
We wish this on no one. If you find anything that works please share or pm me with anything you might know of that might be helpful to my son.
Peace.