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Has anyone ever heard of something like this?

I'm a 46 yr old male and have been dealing with chronic long-term generalized edema for almost two years now. It leave pits/indents in my legs. On the days when the edema is at it's worst, I feel extremely dried out to the point of feeling almost dehydrated with an extremely dry mouth and low urine output. I do most of my urinating at night after I lay down to sleep, which is really annoying because I need to get up several time to make trips to the bathroom

Docs have tested me for usual suspect of heart, liver and kidney diseases and low protein/albumin, as well as thyroid, diabetes, etc. My blood pressure is low and I was a lean person before packing on all this water weight (about 20-30 pounds-my estimate). I also suffer from newly diagnosed colitis and gastritis but doctors are telling me no connection to the edema. Personally, though, it does feels like they are connected because both symptoms tend to get worse and improve simultaneously

I'm not taking any meds. My docs are stumped and have sort of given up on my case at this point, or at least that's how it feels to me. They're no longer trying to actively diagnose, it seems. They threw their hands up once the heart, liver and kidney tests came back normal. At this point, I'm thinking they might have missed something

Any insights, experiences or suggestions will be greatly appreciated. I am at wits end with all this and the edema is extremely uncomfortable. I don't have much appetite, either. Unfortunately, I've never heard or read about anyone with symptoms like mine. I seem to be an anomaly

1 Reply

Hi Andy

That's a unpleasant combination! There are a few possibilities to explore that may hopefully be of some use to you...(or may be completely wrong, apologies in advance).

I've got no experience with oedema, but have had to manage gut problems for a long time.

There has been recent research on the effect of food additives causing problems in the guts, such as IBS, Crohn's (possibly colitis?) Although the research was conducted on rats there seems a good possibility that this would apply to humans. My guts have been damaged by gluten and I know I can't eat any food with additives, without unpleasant consequences.

Have a look at "intestinal permeability" on PubMed, which can be caused by the effects of gluten or by bacteria, and is linked with a wide variety of health problems. Problems with gluten may mean coeliac disease, or non-coeliac gluten sensitivity. There are a few descriptions on PubMed of problems with gluten and oedema. This is a bit of a long shot!

Perhaps try keeping a food diary to see if you can pinpoint anything? Have your doctors suggested any ways of managing the colitis and gastritis? Probiotics?

Hope you can get this sorted out soon.


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