@mandyjunebug WELCOME! I am so happy you found our community and I understand completely what you are going through. It sounds like you need a good vascular work up, especially since you have had an omental infarction. There are several diseases that can mimic mals, but no matter what the disease or diagnosis, we all here have the same symptoms and we are always here for you. Food aversion is difficult for people to understand unless they have been through it. I get fear going to the grocery store, when a friend calls me up to go for lunch it is instant anxiety. The holidays are brutal and family and friends have a hard time understanding. Food is so social so that adds to the adversion. I have had two Mals surgeries, I also have a vascular disease that can cause symptoms. I know it is difficult to be your own advocate, but their are physicians out there that are patient centered and want to hear your opinions and thoughts. It is your body, you know it better than anyone. Don't give up until you find a physician who is willing to work on your team. We need their expertise to guide our care, however they need our expertise so they can guide us properly. You have a complicated history, and with your experience you will probably know more than most providers about MALS. I recommend reading what you can from quality sources, such as Mayo Clinic, Cleveland Clinic also you can use google scholar to find updated, peer reviewed papers. Feel free to post articles here , ask questions. This is a small group right now, but it is growing slowly and we all have been in your shoes! Again welcome!

@kariulrich i would love some recommended reading. Thanks. My history is very complicated...even without something like MALS. I already have a rare disorder called VHL. So i have had a half dozen surgeries, including three major abdominal surgeries. I've had a whipple which removed a good chunk of my digestive tract and head of my pancreas, a bilateral adrenalectomy, and a couple of other bits and bobs removed. I have a lot going on in the abdominal region. Over the last four years i have had an ongoing agonizing epigastric pain that is not related to eating, and got a whole bunch of shrugs from doctors, including one comment of "I'm not going to say it's all in your head..." And has been pretty much brushed off as "scar tissue". Luckily, i figured out that a course of 3 advil per day keeps that pain managed pretty well. This new stomach pain came on in the last year, and i had been seeing a local gastro doctor, but i got the brush off from him, so i emailed my endocrinologist at UW and asked him to add a gastro to my team there. I already have a neurosurgeon, pancreatic surgeon, retina specialist, and endocrinologist...gastro should complete the set LOL. Some of the things that go with MALs sounds very familiar, but some not familiar. So hopefully i can finally get this sorted. I am managing my symptoms well enough that the worst episodes come like attacks now instead of all the time. So that is good. One the weird things, and the thing that causes me the most problems is liquids. Have you ever heard of liquids being a problem for anyone else? For example a few nights ago i had one bowl of split pea soup for dinner. Liquids are a known risk food for me, but i waited a few minutes after eating the soup and didn't feel any warning signs. So i decided i could have a cup of apple juice. About an hour later i was in so much agony. The easiest way to describe it is feeling like i just won a hotdog eating contest and now my stomach is about to explode. I was belching. Uncomfortable. Gripping my stomach. Pretty much debilitated. And looking at the floor like it would be a good place to writhe in agony. I was like that for about 2 hours with no end in sight. Since it has helped me avoid puking in this situation before i worked up the courage to slowly walk up and down the stairs a few times, popped a couple advil for good measure. After a total of 2hr 45 minutes it finally stated to ease off and then was gone pretty quickly. All this from maybe 2 cups of liquid. Have you heard of that happening to anyone else?