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

Swelling Of Ankles And Hands?

Mjohnson73

By Mjohnson73
in Coping with Celiac Disease

Recommended Posts

Mjohnson73 Apprentice
Mjohnson73
Posted

Hey all,

my ankles and hands have been swelling lately and I was wondering if that would be a symptom of my fibromyalgia or my Gluten Intolerance...

anyhow... let me know what you guys think....

--Maya

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

Celiac.com Sponsor (A8-M):


cdford Contributor
cdford
Posted

I have both FMS and GI...and my hands and feet swell something fierce, especially during the summer months. My shoes are loose in the morning yet leave whelps by evening and I am just now getting to where I can wear my wedding band again after several years.

Mjohnson73 Apprentice
Mjohnson73
Posted
  • Author

ok so it is from both or one or the other but not sure which one :)

got it ... thanks...

it is just frustrating cause it is painful...

thanks for the info...

--Maya

ravenwoodglass Mentor
ravenwoodglass
Posted
ok so it is from both or one or the other but not sure which one :)

got it ... thanks...

it is just frustrating cause it is painful...

thanks for the info...

--Maya

<{POST_SNAPBACK}>

Yea, I get both, by the way my fibro was caused by the gluten and has been gone now for a while so you may see that resovle. Hears what my PT told me to do and I found it helps a bit. I would lie on my bed with my legs straight up at the hips against the wall and my hands on 3 pillows to keep them as high as possible, She had me do this a couple times a day and again 3 hours before bed. This would help drain some of the fluid which I could then pee out before sleeping instead of waking up 3 or 4 times a night. Also cut your salt intake sharply in the summer months or when glutened. A massage therapist may be able to show you how to do a lympahtic massage on your arms and legs also to rid your body of the excess fluid. I found after about a year gluten-free this was no longer an extreme occurance. Unless I am glutened now I find I only sweel the 'normal' amount everyone else does.

VydorScope Proficient
VydorScope
Posted

Lots and lots of things can cause that, too much salt in your for examlpe, diabeates is another. So realy hard to blame it on anything. :(

Guest kfrancisvt
Guest kfrancisvt
Posted

I find that if I don't eat gluten free my fingers will swell and my joints will ache like you wouldn't believe. Once I get the gluten out of my system, my swelling and aches go down.

Eliza13 Contributor
Eliza13
Posted

Kfran....

The EXACT same thing happens to me. That was the final straw that got me complaining to my doc prior to diagnosis. Bad joint pain, swollen feet and hands, and itchy legs. I was never checked for the fibrom though....wondering if I should now, but all of that is gone by going gluten-free (and I have yo-yoed!!!).

:)

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

Celiac.com Sponsor (A8-M):


zakismom Newbie
zakismom
Posted

I was the same way before finding out I had celiac. It was so bad my hands cramped into one shape and I could barely hold on to anything (I'm an optician so this was a HUGE problem.) Also, my feet were so big I couldn't wear my regular shoes. A few a the medical people I saw actually started to think I had a heart problem because of them. After going gluten free the swelling went down within a month or so but, the pain didin't really go away until a year or so. It is much better now so keep the gluten out of your diet!

Guest kfrancisvt
Guest kfrancisvt
Posted

Skarlet13...

You mentioned the itchy legs ... I too have that at times but I thought it was because I wore nylon trouser socks during the day (and I don't usually wear them when I am in Florida) and that I was in a different, drier environment. But the itchy legs do tend to correspond when I have eaten something with gluten.

Thanks for the insight!!!!

bluelotus Contributor
bluelotus
Posted

I don't get the swelling, but I do get sore joints - esp. my ankles and knees. I remember seeing a physical therapist years prior to celiac disease diagnosis and she couldn't figure out what was up with my ankle (usually my left one that is most bothersome, kind of weird that it is not symmetrical). Anyway, nice to know that I wasn't the only one with these odder symptoms.

Here's an ignorant question - what is fibromyalgia? Is that related to your celiac disease?

nettiebeads Apprentice
nettiebeads
Posted

[(usually my left one that is most bothersome, kind of weird that it is not symmetrical). Anyway, nice to know that I wasn't the only one with these odder symptoms.

Here's an ignorant question - what is fibromyalgia? Is that related to your celiac disease?

<{POST_SNAPBACK}>

  • 2 weeks later...
de caps Contributor
de caps
Posted

I had very severe swelling in my lower legs. I could put a hand print on my shin it was so bad. After being gluten free for one week it went away completely.

My Primmary Care MD , didn't consider celiac disease. It was my oncologist( I have Melanoma) who diagnosed me. MY primary MD still won't admit this was from the celiac disease. I'm now looking for a new Primary care doctor.

judy05 Apprentice
judy05
Posted
I was the same way before finding out I had celiac.  It was so bad my hands cramped into one shape and I could barely hold on to anything (I'm an optician so this was a HUGE problem.)  Also, my feet were so big I couldn't wear my regular shoes.  A few a the medical people I saw actually started to think I had a heart problem because of them.  After going gluten free the swelling went down within a month or so but, the pain didin't really go away until a year or so.  It is much better now so keep the gluten out of your diet!

<{POST_SNAPBACK}>

I used to get the cramps in my hands, I would have to massage them and it really hurt, as long as I stay on the diet I'm OK..

GC1 Rookie
GC1
Posted

Maya,

I've been gluten-free for about 9 weeks. My hands had stated swelling (and turning 'white') about 3 yrs ago. They no longer swell, unless I eat a large meal of beef or pork (or naturally gluten--2 times since gluten-free). To show how long it had been effecting me, that I didn't even realize; a ring that I wear everyday, now fits very loosely, and it was bought over 5 yrs ago.

As others stated, many things cause swelling, but if it's not something fully controllable, you might consider Black Cohosh as an aid... but get an OK from a professional; BC is VERY potent. It is an excellent anti-inflamatory, but is one of the most potent 'herbs' available. I take it about every 3 days, and have no doubt it is helping me heal from yrs of gluten posioning.

GC

Mjohnson73 Apprentice
Mjohnson73
Posted
  • Author

Thanks for all the information!

I am glad I am not the only one with swollen ankles and hands...

Lately my right ankle has been really bad even tho I have been 100% gluten free.... but it could just be edema too (I have been diagnosed with that in the past too...)

somedays I keep telling my hubby that the first day they offer brain implants into other bodies...sign me up! Altho a lot of it is "In the head" so I guess that won't work after all....

sigh...

oh well...

--Maya

  • 2 weeks later...
Stephanie1 Newbie
Stephanie1
Posted

I've only been gluten-free for about a week and a half. Blood work points to celiac, but waiting for the biopsy until next week. My swelling of ankles and hands didn't start until AFTER I went on the gluten-free diet...is that weird? It seemed like once my vomitting and diarrehea symptoms went away when I stopped eating gluten, the swelling started, and I've never retained water like this! (I just delivered a baby 2 months ago...was NEVER swollen) Am I doing something obviously wrong? It's really getting frustrating because when I get rid of one problem, it seems another comes along! Help!!

aikiducky Apprentice
aikiducky
Posted

Give it more time before you panic, Stephanie. It could be that with the vomiting and D that you just couldn't retain that much fluid before... <_< Hopefully it'll improve when you start to heal.

Pauliina

  • 10 years later...
AnitaL Newbie
AnitaL
Posted

Just learning about all this...I had intense achiness, fatigue, and swelling in my ankles and feet yesterday within an hour of eating some bagels. So I googled Celiac + ankle swelling, and this article came up. But for Maya and anyone else who may be interested in finding out more, I'm halfway through reading a (lengthy) article called "Celiac Disease 101: A Beginner's Guide" by the folks at SCD lifestyle (probably won't be able to post the link here, otherwise I would). Sounds like they're saying that edema and FMS (I have it too) are both caused by Celiac. And WebMD.boots mentions swelling being a serious side effect of Celiac, due to an inability to absorb nutrients, including protein. Yikes!

kareng Grand Master
kareng
Posted
1 hour ago, AnitaL said:

Just learning about all this...I had intense achiness, fatigue, and swelling in my ankles and feet yesterday within an hour of eating some bagels. So I googled Celiac + ankle swelling, and this article came up. But for Maya and anyone else who may be interested in finding out more, I'm halfway through reading a (lengthy) article called "Celiac Disease 101: A Beginner's Guide" by the folks at SCD lifestyle (probably won't be able to post the link here, otherwise I would). Sounds like they're saying that edema and FMS (I have it too) are both caused by Celiac. And WebMD.boots mentions swelling being a serious side effect of Celiac, due to an inability to absorb nutrients, including protein. Yikes!

Before you self diagnoses yourself with an autoimmune disease, please see a doctor for some blood work.  Celiac usually doesn't just "pop-up" one day after a bagel.  Keep eating a regular gluten diet until all testing is finished

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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,873
    • Most Online (within 30 mins)
      7,748
    kellz
    Newest Member
    kellz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.