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Edema As A Symptom?

holiday16

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holiday16 Enthusiast
holiday16
Posted

Curious if anyone had edema as one of their symptoms. This was what presented first and has been a large problem. The swelling is mostly abdominal and at one point I was retaining almost 30 lbs. of water. All testing for possible causes have always come back negative and after many medications we found that Strattera keeps it off the best so it appears that low noripinephrine plays a role. I also take a diuretic to keep it off.

I've been gluten free for 3 months after positive tests from Enterolab. While the edema has not gone away totally I have noticed I need the diuretic less and if I accidentally have any gluten I gain 4-5 lbs. overnight.

I really want to know if anyone else has dealt with this. Every type of bloodwork has been done for things that cause edema and all are always negative. I now know it's food related, but am not sure it's 100% gluten as I had the same reaction after eating crab.

I do feel so much better being gluten free though. My reactions were mostly neurological and I seem to be fairly sensitive to any gluten so that makes it pretty easy to stay on the diet!

Paulette

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Rachel--24 Collaborator
Rachel--24
Posted

Hi,

I get this as a symptom for all of my food intolerances. For me....its never went away 100% because I react to alot of things.....not just gluten. :(

I'm pretty sure its caused by candida in my case.

jerseyangel Proficient
jerseyangel
Posted

Oh my gosh, edema was definately a symptom for me. I used to look completely different--my face was puffy all the time, it made my eyes look smaller.

I also had it in my legs, I could press my thumb in my calf, and the indentation would stay. My hands were also a problem.

After going gluten-free, and eliminating my food intolerances, the edema is gone. My face has gone down to what is finally normal for me. I also now have shoulder blades, and a collarbone that you can see! I never used to wear sleeveless tops because everything was "round" :D , but now there is normal defination.

holiday16 Enthusiast
holiday16
Posted
  • Author

I actually tested for Candida a few years back and the NP that ordered it was surprised it came back negative. All of my brothers and sisters have had it however so I'm very familiar with it and was quite relieved the test showed I was fine! At this point I am suspecting other food intolerances given my reaction to crab, but I do know gluten sets off the same reaction.

Any idea how much water you retain when it happens?

holiday16 Enthusiast
holiday16
Posted
  • Author
Oh my gosh, edema was definately a symptom for me. I used to look completely different--my face was puffy all the time, it made my eyes look smaller.

I also had it in my legs, I could press my thumb in my calf, and the indentation would stay. My hands were also a problem.

After going gluten-free, and eliminating my food intolerances, the edema is gone. My face has gone down to what is finally normal for me. I also now have shoulder blades, and a collarbone that you can see! I never used to wear sleeveless tops because everything was "round" :D , but now there is normal defination.

That sounds very similar except my edema was non-pitting. I accidentally had gluten over the weekend and my face got puffy, fingers swelled, ankles and abdomen. I am so thankful that it's not as bad as it was. I went from size 8 jeans down to 2. I'll be interested to see how many other people react this way!

  • 5 months later...
sillan Newbie
sillan
Posted
That sounds very similar except my edema was non-pitting. I accidentally had gluten over the weekend and my face got puffy, fingers swelled, ankles and abdomen. I am so thankful that it's not as bad as it was. I went from size 8 jeans down to 2. I'll be interested to see how many other people react this way!

How long did it take for you to see a reduction in the edema? I self diagnosed myself with celiac disease 3 months ago. I believe that my legs are swollen. I'm so interested in finding out how long I might have to wait to see if that symptom will go away or not. Some of my other symptoms are greatly improving the longer I go without gluten. I am vegan as well so I hope that will help with my healing.

Thanks

ravenwoodglass Mentor
ravenwoodglass
Posted

Make that a yea here also. I am a small person and mine was all over. It was most noticeable in my abdomen, I went from a size 12 to a 2 within a couple of months of diagnosis. The thing I found most surprising was my shoe size, I thought it had increased because of carrying a 10 lb baby. I had to go and buy all new shoes when my shoe size decreased from a 7.5 to a 6. My fingers would also swell so much at night that I broke a antique platnium ring my husband gave me twice. Granted it had a weak spot from sizing but it still seemed odd and is a pricey repair. I still get the finger swelling when glutened but never a bad as it was prediagnosis. I think, and I don't have any research to back this up it is only my opinion, that the edema we experience may have a lot to do with the neuro effects. I believe it is a contributor to the misfirings (seizures) and chemical imbalances that many of us live with pregluten free.

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lonewolf Collaborator
lonewolf
Posted

I had terrible edema (just like jerseyangel's - pitting) and was finally diagnosed with a kidney disease. Going fanatically gluten-free has put my disease into remission and I have no more edema. (It was proven by a kidney biopsy that I have the kidney disease, so I know for sure what the problem was.) No doctor, except my naturopath, will believe that there is any relationship to the kidney disease and gluten, but I know differently.

andreagrant Apprentice
andreagrant
Posted

I had terrible swelling too, especially in hot weather. My face would puff up and my fingers would swell up (2 ring sizes larger). My stomach has also changed--I've gone from 16's being a bit tight to 14's being a bit loose in pant size. Oh and my ankles aren't swollen anymore. I also have a lot of neuro symptoms--brain fog (sometimes outright confusion and can't carry on a conversation), dizziness, fatigue, headaches, depression, anxiety (wow has that really gone away!).

sillan Newbie
sillan
Posted
I had terrible swelling too, especially in hot weather. My face would puff up and my fingers would swell up (2 ring sizes larger). My stomach has also changed--I've gone from 16's being a bit tight to 14's being a bit loose in pant size. Oh and my ankles aren't swollen anymore. I also have a lot of neuro symptoms--brain fog (sometimes outright confusion and can't carry on a conversation), dizziness, fatigue, headaches, depression, anxiety (wow has that really gone away!).

How long did it take these symptoms to go away for you please?

andreagrant Apprentice
andreagrant
Posted
How long did it take these symptoms to go away for you please?

I went gluten-free on 3 March and the edema stuff was gone by the end of June (possibly earlier--memory is not so good, but I have an email to a friend from 30 June stating the bloating/swelling was all gone).

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