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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.