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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    4. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    5. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    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

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.