Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Edema

Wolicki

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

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...

Wolicki Enthusiast
Wolicki
Posted
  • Author
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!!!

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!

Wolicki Enthusiast
Wolicki
Posted
  • Author
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.

Wolicki Enthusiast
Wolicki
Posted
  • Author
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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted
  • Author
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:

  • 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--

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    2. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    4. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    5. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,347
    • Most Online (within 30 mins)
      7,748
    Carla Mort
    Newest Member
    Carla Mort
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.