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

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

  • 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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.