Ideopathic Postprandial Syndrome

You're saying "this is a thing that can happen to people."

I'm saying "it's not really a thing at all." :)

Are you saying that if something can't clearly be defined than it doesn't really exist?

Nope.

I kind off agree with you. Kind off.

When they can't find out, or they don't understand why person has reaction as they do - the call it that.

I deal with the symptoms, but in reality in my case - it is not really 100% "idiopathic" condition anymore. After 2 - 3 years dealing with symptoms, that they told me is "you had RNY, that's why", or "it is dumping, stop eating carby stuff" (I was not, and it was not dumping), to "you probably are allergic to food you eat" (some yes others- nope) and "your are eating too fast" "you are not chewing enough" etc etc...

Eventually I was seen by a great Endo who diagnosed me with a borderline Secondary Adrenal Insufficiency - hypo- pituitary deficiency. Idiopathic. As in " they don't know why, but they think my pituitary are not working correctly. They work if they feel like, during some major crisis, but only for a short while. And if they feel like it. Maybe. Or the wake up an work like crazy fir 2- 3 hours and then they quit. Just because.

Nobody knows why, and the only hung they can do is to give me script for steroids and wish me good luck. They checked for tumors but as of now- they can't find any.

So.. They gave me a list a label, doc note, monthly steroids, plus extra if I need (specially for surgery) and told me to deal with it.

I was lucky, and very determined and persistent to get diagnosed with something. I got probed and tested for hours. This doc is very up to date in her research and current with what is going on. In a way I was lucky I could see her. We gave me my life back.

BTW: when they told me in the past that all the symptoms were "in your head", that were so right .. just not the way they meant it. Lol.

I'm really glad you were persistent and found a treatment! :)

My point was that two people diagnosed with an "idiopathic" condition may have two completely different situations, but they both have the same label. Just like two people with eating disorder NOS may have the same diagnosis, but completely different issues requiring completely different treatment. Your treatment works for your idiopathy, but it may not for someone else with the same label and a different physical situation.

You are so right. When they don't know what to do with some of us- they call it idiopathic this or that.

When I was researching IBS, and fibromyalgia - I realized how little the medical community knows.

"You have gut pain and reaction - yea, let's call it IBS". I have some docs that I fired, because they just stared at me when I asked them why? What is in me that causes the day? Yea, I can learn to deal with the symptoms, but I want to know the cause.

Some docs are willing to try to find out the cause. Others - take miralax, and come back in 2 Months to tell me how much you need to take. Sure, I can give you pain pills for gut pain". Nope. Not me. If I can understand, even partially, what is causing it, I may be able to prevent some reaction some of the time. And pain.

I hate hate hate hate being in pain. And I hate pain pills.

Hey, I've been dealing with this condition (adrenergic postprandial syndrome) for around 9 months now and I know exactly how you feel. It really sucks. It started during a period where I was under a lot of stress + I was trying out the keto diet (which for some reason triggered the symptoms). Have you found any new information or figured out what is going on?

I know it's directly related to stress, and having cyclothymia + severe anxiety those aren't a good combo for it.. But from the research I've done, it seems no one has any clue about what this really is.