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Edema

Wolicki

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Wolicki Enthusiast
Wolicki
Posted

I was diagnosed in June with Celiac's, after 10 years of suffering. I was extremely thin and malnourished. Not long after I eliminated gluten, I blew up with fluid retention. 25 pounds in one day! Talk about painful!! :( My doctor says I have refeeding edema. He prescribed a low carb diet and "patience" and says it will resolve itself with time.

It's been 6 weeks, and it hasn't gone away yet :angry: I'ver tried diuretics, the doctor says it makes this kind of edema worse. Did anyone else experience this? How long does it last? Did you find any effective treatment? Thanks for your help! . I've tried every kind of home remedy with no results. Three doctors have told me that they don't know of anything else that will help. All of my blood levels of everything are perfect for the first time in years, and I feel great, except for this ridiculous amount of swelling, and it's from neck to toes, not just one area.

Thank you for allowing me to vent, and if you have had a similar expericne, I would love to hear from you

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tarnalberry Community Regular
tarnalberry
Posted

I'd also take a look at what you *added in* to your diet, not just what you eliminated. Usually, something gets added in, or significantly increased in amounts, when we eliminate something as "staple" as gluten.

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holiday16 Enthusiast
holiday16
Posted

If it continues to be an issue you may want to look at the possiblity of idiopathic orthostatic edema. It took me 10 years to figure out that is what was wrong with me. There is a yahoo group for this, but it has very little activity. It is helpful though to go back and read old posts. That is where I was able to find a medication that helps this. Would never have found it otherwise. Most Drs. are very dismissive of this and do not understand what it is. No one even really knows for sure why the medication works or exactly what the mechanism is that causes the swelling. It's all theory...

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Wolicki Enthusiast
Wolicki
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Posted
If it continues to be an issue you may want to look at the possiblity of idiopathic orthostatic edema. It took me 10 years to figure out that is what was wrong with me. There is a yahoo group for this, but it has very little activity. It is helpful though to go back and read old posts. That is where I was able to find a medication that helps this. Would never have found it otherwise. Most Drs. are very dismissive of this and do not understand what it is. No one even really knows for sure why the medication works or exactly what the mechanism is that causes the swelling. It's all theory...

I have not heard of Orthostatic edema before. THank you so much for your reply! I cant tell you how happy (that doesn't seem like the right word) I am to find someone else who has experienced this and actually found a treatment. My doctor actually found a study that said amphetamine might work. He told me to try 5 mg a day, but I dont think he thought it would work. I took 5 mg for 3 days, and didn't like the jittery feeling, and it didn't make much of a difference. Then I spoke to an Osteopath who said I should be taking 20 mg, up to 3 times per day. I started that on Weds. I haven't lost any weight yet, but I havent gained either.

How long were you on the meds before you started to diurese? What dosage?THank you so, so much!!!

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holiday16 Enthusiast
holiday16
Posted
I have not heard of Orthostatic edema before. THank you so much for your reply! I cant tell you how happy (that doesn't seem like the right word) I am to find someone else who has experienced this and actually found a treatment. My doctor actually found a study that said amphetamine might work. He told me to try 5 mg a day, but I dont think he thought it would work. I took 5 mg for 3 days, and didn't like the jittery feeling, and it didn't make much of a difference. Then I spoke to an Osteopath who said I should be taking 20 mg, up to 3 times per day. I started that on Weds. I haven't lost any weight yet, but I havent gained either.

How long were you on the meds before you started to diurese? What dosage?THank you so, so much!!!

I can't remember exactly how much I started with, but I know I increased it very gradually. I think maybe 10 mg. and I lost 3 lbs. the first day and then it really slowed down. I've been on it for about 7 months now and have lost 9-10 lbs. so still have maybe 7-10 more to lose? I went up to 15 mg. and then it took me forever to get up to 20 mg, but I'm on that now. Over time the racing heart etc. goes away as you adjust to the medication. I found taking 5 mg. sustained release capsules work best and I take 10mg. in the morning and another 10 four hours later. I could not find the original study, but a summary is at this link:

Open Original Shared Link

It has been a very slow process for me, but I was dealing with this for about 10 years and I had been taking diuretics, but as little as possible. I was at a point before I started this med. that I was starting to have blurred vision and could feel the water moving in my head which sounds weird, but if I bent over I could feel it. I just had so much edema and it was no longer responding to anything. After being on this med. if I take a diuretic I have to chip off a tiny fraction because that's all I need! Before I could take a whole pill and it would do nothing. Just that alone tells me it makes a huge difference. I have not had any diuretic in the past week and have not had water gain even though I had alot of sodium the other night. In the past sodium made me swell even if it was just a little bit. (For some reason with this condition the body seems to hyper respond to sodium). I was very surprised to find that even after having so much sodium I actually lost some water weight.

Not sure if it will be true for you, but stress also seems to make me swell more. However, on this med. I also handle stress much better. I really think my system was just not functioning the way it should which led to many of the problems I was having and stress made it worse. Gluten also makes me swell which is interesting. Dairy made me swell a little bit for a while. Have you tried eliminating that to see if it makes a difference? For most people it's casein, but for me it was lactose.

I hope this med. works for you. It took me 10 years of searching to find an answer so if this works you're lucky to have found it so quickly!

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Wolicki Enthusiast
Wolicki
  • Author
Posted
I can't remember exactly how much I started with, but I know I increased it very gradually. I think maybe 10 mg. and I lost 3 lbs. the first day and then it really slowed down. I've been on it for about 7 months now and have lost 9-10 lbs. so still have maybe 7-10 more to lose? I went up to 15 mg. and then it took me forever to get up to 20 mg, but I'm on that now. Over time the racing heart etc. goes away as you adjust to the medication. I found taking 5 mg. sustained release capsules work best and I take 10mg. in the morning and another 10 four hours later. I could not find the original study, but a summary is at this link:

Open Original Shared Link

It has been a very slow process for me, but I was dealing with this for about 10 years and I had been taking diuretics, but as little as possible. I was at a point before I started this med. that I was starting to have blurred vision and could feel the water moving in my head which sounds weird, but if I bent over I could feel it. I just had so much edema and it was no longer responding to anything. After being on this med. if I take a diuretic I have to chip off a tiny fraction because that's all I need! Before I could take a whole pill and it would do nothing. Just that alone tells me it makes a huge difference. I have not had any diuretic in the past week and have not had water gain even though I had alot of sodium the other night. In the past sodium made me swell even if it was just a little bit. (For some reason with this condition the body seems to hyper respond to sodium). I was very surprised to find that even after having so much sodium I actually lost some water weight.

Not sure if it will be true for you, but stress also seems to make me swell more. However, on this med. I also handle stress much better. I really think my system was just not functioning the way it should which led to many of the problems I was having and stress made it worse. Gluten also makes me swell which is interesting. Dairy made me swell a little bit for a while. Have you tried eliminating that to see if it makes a difference? For most people it's casein, but for me it was lactose.

thi

I hope this med. works for you. It took me 10 years of searching to find an answer so if this works you're lucky to have found it so quickly!

It helps so much just knowing that I am not the only one this has happened to! Did you find that your level of carb intake had any effect? If it doens't matter, I sure would love to be able to have some! My doc has me on 20 g a day of carbs. It's soooo hard.

I have not tried eliminating dairy- it has been my best friend for som long as for extended periods was the ony thing I could keep down before diagnosis. Maybe I should try it. Would I know right away if dairy was the problem if I eliminate it, or is it a long drawn out process? I don't even know what casein is, so I will look it up.

The thing that frustrates me most, aside from the gigantic tummy and tree trunk legs, is that I thought we FINALLY figured out what was wrong, and that it would be smooth sailing from here on out. i guess I was wrong :(

I feel like I have found a long lost sister :) It probably sounds silly to someone who has never been through somethimg like this. Thank you ever so much.

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Wolicki Enthusiast
Wolicki
  • Author
Posted
It helps so much just knowing that I am not the only one this has happened to! Did you find that your level of carb intake had any effect? If it doens't matter, I sure would love to be able to have some! My doc has me on 20 g a day of carbs. It's soooo hard.

I have not tried eliminating dairy- it has been my best friend for som long as for extended periods was the ony thing I could keep down before diagnosis. Maybe I should try it. Would I know right away if dairy was the problem if I eliminate it, or is it a long drawn out process? I don't even know what casein is, so I will look it up.

The thing that frustrates me most, aside from the gigantic tummy and tree trunk legs, is that I thought we FINALLY figured out what was wrong, and that it would be smooth sailing from here on out. i guess I was wrong :(

I feel like I have found a long lost sister :) It probably sounds silly to someone who has never been through somethimg like this. Thank you ever so much.

It's working! 20mg amphetamine, 3 times a day and I've lost 7 pounds of water over 4 days. First couple of days I was very hyper, and not sleeping much, but otherwise fine. My tummy and legs are visibly smaller :P Very happy and so thankful for the help!

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Wolicki Enthusiast
Wolicki
  • Author
Posted
It's working! 20mg amphetamine, 3 times a day and I've lost 7 pounds of water over 4 days. First couple of days I was very hyper, and not sleeping much, but otherwise fine. My tummy and legs are visibly smaller :P Very happy and so thankful for the help!

Well, now it's getting worse again. ARgghhh!! This just stinks! Just when you think you're finally going to be "normal" .... :huh:

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  • 1 year later...
Waterbegone Newbie
Waterbegone
Posted

Hi- r u still taking the meds 3 x day of 20mg? I have oe as well. I have 15 mg 3 x day and lost 10 lbs this winter but I'm gaining it back bc it's hot! I want to up my dose to 60. Did u lose all the water? Wondering what u have found out--

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kareng Grand Master
kareng
Posted

Hi- r u still taking the meds 3 x day of 20mg? I have oe as well. I have 15 mg 3 x day and lost 10 lbs this winter but I'm gaining it back bc it's hot! I want to up my dose to 60. Did u lose all the water? Wondering what u have found out--

The last post was from Sept 2009

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