Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Water Retention/edema

Kritter

By Kritter
in Coping with Celiac Disease

Recommended Posts

GFinDC Veteran
GFinDC
Posted

I had swelling of my feet and ankles for years. I quit eating salt for years but it didn't help the swelling. I have read that swelling can be an allergic reaction, and I think that is what I had. Mine went away after going gluten-free and stopping drinking wine. I believe it was a reaction to yeast or sulfites, although there are some wines that may have gluten in them. Anyhow, I use the Morton Lite salt substitute now, it has a mixture of salt and potassium chloride. It might be good to read up on potassium and salt, as they are kind of a balancing act for your bodies cells/blood. It seems like there is a connection between potassium deficits and swelling also.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Here's my story. Ankles and feet began swelling big time in my late 30's; used to be a problem only when I pulled an all-nighter before then. Blood pressure went up at same time, was on BCPills. Started taking diuretic; have done so for last 30 years--"idiopathic edema". Salt makes not a wit of difference although I have always been low salt. Don't do potato or corn chips or salted nuts, etc. Gluten free--no change, in fact worse because now they are messing with my meds, changed diuretic, potassium has been out of balance (they changed my meds because I have poor renal function now secondary to taking prescribed diclofenac for RA--went into kidney failure, but recovered) and also secondary to diuretic. Everything seems all messed up now, can't get my ankles down, carrying lots of excess fluid even though taking Lasix to try to get rid of it after trial of 1/2 dose of diuretic. Should I see an endocrinologist, or someone else when I come to Nevada in a couple of months? Have copies of all my labs.

What you folks think? Sorry to hijack thread :unsure:

LuvMoosic4life Collaborator
LuvMoosic4life
Posted

I was always puffy on gluten. Now that I'm gluten free I notice even more when I gain water wieght. I actaully think it has gotten worse gluten-free, but thats because it isn't a constant thing and I actually notice it now.

Although a low sodium diet can help some people. I have found that can make my water retention worse. I'm 23 and I am also a runner. I've been having horirible hormone fluctuations throughout the month which cause water rentention....I can even feel it in my vocal chords- NOT fun when you are a singer-its rather debilitating. But anyways. For a while I was keeping my sodium under 500 Mg a day....it helped at first, but then it seemed to be doing nothing. I noticed if I purposely ate something salty (not extremely salty) I would feel better. When I keep my sodium between 800 mg and 1500 a day I seem to feel best.

It really is an individual thing. I also know too much wate ris bad for me..there are times where i would feel light headed when I drink water all day on a low sodium diet. I normally have problems with feeling dizzy, but that just makes it worse.

best of luck to you. things will get better!

caek-is-a-lie Explorer
caek-is-a-lie
Posted

I get puffy fingers, neck, torso, and sometimes feet. It can get really bad. Many years ago it was so bad my skin hurt because it was so tight. I haven't noticed a direct relation to salt...for me it's more related to gluten and sugar consumption. It definitely gets bad if I eat wheat bread. People talk about getting bloated belly from gluten, but for me I get an entire bloated body! It's freaky because my stomach, hands, and chin will blow up like a balloon just minutes after eating. I can grow 2 pants sizes in 30 seconds. Freaky! And it takes awhile for it to go away. I hate it. Doctors ignore me when I tell them about it, but I try to control it by watching what I eat. After I went 100% gluten-free, I was able to wear some rings that I haven't worn in years. It was great! :) Lately I've been having problems with it again, though. I think it's either too much sugar or I'm sensitive to milk. Not sure which, though.

LuvMoosic4life Collaborator
LuvMoosic4life
Posted
I get puffy fingers, neck, torso, and sometimes feet. It can get really bad. Many years ago it was so bad my skin hurt because it was so tight. I haven't noticed a direct relation to salt...for me it's more related to gluten and sugar consumption. It definitely gets bad if I eat wheat bread. People talk about getting bloated belly from gluten, but for me I get an entire bloated body! It's freaky because my stomach, hands, and chin will blow up like a balloon just minutes after eating. I can grow 2 pants sizes in 30 seconds. Freaky! And it takes awhile for it to go away. I hate it. Doctors ignore me when I tell them about it, but I try to control it by watching what I eat. After I went 100% gluten-free, I was able to wear some rings that I haven't worn in years. It was great! :) Lately I've been having problems with it again, though. I think it's either too much sugar or I'm sensitive to milk. Not sure which, though.

OMG I get the thing where my skin hurts.....i was wondering always if this is normal with edema?? It actaully gets so bad that if I press down anywhere on my body...mostly around my mid section/sides/back....it feels like bruising!!! then I can feel the same bruising feeling in my muscles. I have more muscle than fat and I know muscle retains more water.....which really sucks!!....anyone else have this problem? UGH!

  • 2 months later...
betsb90 Newbie
betsb90
Posted

I've been having digestive issues for about six months now and antibody tests in the past have suggested problems with gluten, so I just recently started a gluten free diet. Some of my symptoms are better (severe stomach pain and bloating after eating, cramping, constipation), and I've only been gluten free for about a week. but I still have a lot of water retention. At first I thought it could be cellulite (yuck), but then I realized it changed throughout the day, my rings didn't fit, and my ankles were swollen. I don't eat many foods containing salt, dairy, or sugar. Since going off of gluten I eat a lot of snacks that contain rice. Can rice typically be the cause of a water retention issue? Or should I wait and be more patient? If rice is an issue, I feel lost about things to eat for snacks! As a college student, crackers are just so convenient.

SGWhiskers Collaborator
SGWhiskers
Posted

Something else to consider as a known cause of nasal congestion, coughing, and difficulty sleeping laying down is reflux. (which we all know can be irritated by gluten).

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

Celiac.com Sponsor (A8-M):


Ariauna Apprentice
Ariauna
Posted

Wow what a great question and one that brought a realization for me! About 2 years ago my ankles and feet started swelling really bad and no one could tell me why. The doctors prescribed me water pills and they didn't make much of a difference so I just suffered through it. Just about 3 months ago I was diagnosed with celiac disease and you know what I have not had any swelling anywhere with the exception of the 2 times I have glutened myself over the past 3 months!! What great news and it feels good to know I will most likely not face that again!! I hope it gives you hope to know that this may subside for you too eventually. I am one of those people that it only took a few days of being gluten-free before noticing no bloating and stomach pain after eating it was like a miracle :) of course it is taking a while for the lower parts of my digestive system to heal up but I am still miles ahead of where I was just a few short months ago!!!

I wish you all the luck and give you healing prayers!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,068
    • Most Online (within 30 mins)
      7,748
    amnaarsal1989
    Newest Member
    amnaarsal1989
    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

    • trents
      Blood results

      By trents · Posted

      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Oral thrush question

      By knitty kitty · Posted

      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Nutrient deficiencies despite normal MARSH and strict gluten-free diet

      By Scott Adams · Posted

      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...