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Acer89 07-27-2015 07:56 PM

Unusual causes of fluid retention?
Any idea of cause for chronic generalized pitting edema, after most common causes have been ruled out?

I was tested for kidney, liver, heart, thyroid, diabetes, general autoimmune markers, etc and all came back normal. My white blood cells count (specifically mono and neutros) is always elevated, usually 12-15k range. I've had this edema chronically for almost two years and docs are stumped

I also have non specific colitis, gastritis and esophageal inflammation but the doc claims no connection with the edema. I tend to disagree because when the edema is at it's worst, I am usually very swollen in the abdominal area and have little appetite.

Also, when the edema is severe, I feel very dried out, almost dehydrated, with dry mucous membranes and dry mouth. It's a very uncomfortable feeling to live with.

I'm a male, 46, low blood pressure and not taking any meds

Has anyone heard of anything like this before?

Bob652 07-28-2015 08:09 AM

Sorry to hear about your issue. Have you tried keeping a food diary? This might find a cause through your diet. Have you ever gone through allergy testing? I'm curious if either diet, allergies, or both have something to do with this. Besides the allergy testing, I would suggest writing down everything you eat and drink for a month or two. Additionally, I would rate the edema daily on a scale of 1-5 or 1-10. Hopefully you will see a pattern. If you figure out a cause, you can avoid that substance and hopefully get rid of the edema.

Acer89 07-28-2015 09:44 AM

Re: Unusual causes of fluid retention?
What kind of food allergies are you talking about specifically? I was tested for celiac disease and a few food allergies (i forget which ones at the moment). I do notice that when I skip meals, I tend to feel a bit better when I start eating again. It gives my intestines a break, or at least that's how it feels. My lower abdomen and upper left quadrant are always tender and swollen. I also have the edema more or less constantly, but it does wax and wane occasionally. The edema tends to improve markedly after bowel movements

Bob652 07-28-2015 11:15 PM

I was curious about celiacs but good to hear you do not have that. If you go to an allergist, they can test for a ton of things. I believe they tested me for 200 items in my first round. It was not fun to go through but it made my life so much better once I knew what I was allergic to. I didn't have gastrointestinal problems but I know that allergies can cause both edema and GI upset.

Additionally, allergists are also specialists in the immune system. If you have any type of immune response causing these issues, there's a chance that they might catch it.

Acer89 07-30-2015 11:33 PM

Re: Unusual causes of fluid retention?
Actually, I'd prefer celiac or just about anything else over this, as long as it was an actual diagnosis. This undiagnosed business is awful. As far as I know, the pitting generalized edema that I have is often caused by heart, liver or kidney failure. But since I tested normally, I am left without any answers or explanation. I'm wondering if they could have missed something

noevr 07-31-2015 02:34 AM

Re: Unusual causes of fluid retention?
Hi I would try elimating dairy and refined sugars initially see if that helps, go from there. Then if that doesn't help white flour. Contonie slowly eliminating things until you notice a change. Especially processed foods.

Some folks go to a raw food diet but I think that is hard to do all at once. I would read up how to convert to that.

Just some thoughts. Cathy

Acer89 07-31-2015 07:12 AM

Re: Unusual causes of fluid retention?
I've actually tried several elimination type diets already but didn't notice any difference. My appetite is close to non-existent, so it's not difficult for me to eliminate foods, as I rarely crave anything these days and eating is more or less a chore for me. My stomach is chronically distended and very painful. The pain is mostly in the left upper quadrant. Before I got sick, I'd never felt anything like this. I had a good appetite and never had any issues with fluid retention or digestion

noevr 07-31-2015 02:16 PM

Re: Unusual causes of fluid retention?
Hi I know how you feel about the eating I hate it as well putting it off as long as possible myself. I've suffered with idiopathic nausea 3 yrs now. Have seen 2 gastro drs so many tests :(.

I've searched for a diagnostician in my area with no luck. Don't know where you are have you tried? We need Dr. House lol! I've been bedridden now 2 yrs. Cathy

Acer89 07-31-2015 03:26 PM

Re: Unusual causes of fluid retention?
I don't exactly hate eating. I just don't ever feel hungry, mostly due to constant stomach distention and lack of intestinal movements,and so eating is a chore. It feels like the food just lays there inside of me and doesn't move along. I'm not nauseous, thank goodness. I just have lots of trouble getting the food down. If I didn't know any better, I'd say I had a blockage of some kind but that's been ruled out, or so they tell me

Sorry to hear that you're struggling too. Chronic illness, especially undiagnosed chronic illness, is just awful

noevr 07-31-2015 04:21 PM

Re: Unusual causes of fluid retention?
Hi, excuse me if I forget previous replies or comments, meds, lol...

But did you get the gatric emptying test? They never did that on me even though I ask my last gastro on the phone on our last convo he said there was nothing else he could do for me practically hung up on me.

Also, there is this one med that is supposed to help move it can't think of the name they put my mom on it but you are not supposed to stay on it more than 3 months. It gave her Parkinson side effects, one permanent! ! I think it starts with an R. There have been ads on TV about it for lawsuits. Mom has passed now.

Do you take a probiotic? Or maybe something like 2 weeks of prilosec OTC?

What does your tongue look like, any coating at all? Any cracking at corners of your mouth? Gums ok?


Acer89 07-31-2015 04:43 PM

Re: Unusual causes of fluid retention?
Yeah, Reglan. That drug is bad news. You'll wind up with permanent mouth twitches and I don't even think that it even does all that much in terms of improving gut motility.

My tongue is always coated, sometimes with a yellow color. My gums are really inflamed as well. It all seems connected to whatever disorder I have

It's the chronic pitting edema that is most concerning and uncomfortable to me, though. It seems very connected to my GI issues but the docs claim that they're separate issues. When the gi stuff acts up, the swelling gets very severe and my legs look twice their size.

I was a really healthy and active person before all of this happened to me, believe it or not

noevr 07-31-2015 05:11 PM

Re: Unusual causes of fluid retention?
Hmmm.....have you considered too much yeast? Could very well cause the gas/distention.

IDK just throwing out ideas that I have tried.

oh and your teeth, what are they doing? Within ONE year I started losing enamel, the front bottom ones the top of them got thin, started chipping, spitting. May want to get to dentist.

Acer89 07-31-2015 05:18 PM

Re: Unusual causes of fluid retention?
Teeth are fine and very healthy. It's the gums that are inflamed. Everything in my GI tract seems to be inflamed from mouth to colon.

noevr 07-31-2015 05:47 PM

Re: Unusual causes of fluid retention?
Ugh I'm going thru 7 dental implants (insurance paying) 5 top front and 2 lower left. Had 5 front lower center crowns 2 months ago I paid $4500. :(. I will probably be getting the screws implanted in the next 6 weeks for the top 5, so scared of the pain portion.

I guess you have researched yellow coated tongue? Cathy

noevr 07-31-2015 06:14 PM

Re: Unusual causes of fluid retention?
Hey I just listed your symptoms and looked several of them up together and read it could be your spleen. Have you looked into this at all? Don't know if it's something or not. I don't know an thing about the spleen. Cathy

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