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

Does Anyone Else Get Really Cold Feet And Hands?


DonnaD

Recommended Posts

DonnaD Apprentice

I am sitting here with really cold feet! They feel a bit numb but have a strange tingle! Once they have got this cold the feeling starts travelling up my legs to my knees. My hands are also cold but not as bad as my feet. I have fibro and have always been the 'cold' one. At work I was famous for sitting almost on top of the radiator. I was always nagging my kids to wrap up warm but realise now that they just don't feel the cold in the same way that I do. I have noticed that it is not so bad if I take kelp tablets.

Is there any thing else I can do other than wear an extra pair of socks and turn the heating up even higher?


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



Celiac.com Sponsor (A8-M):



Guest barbara3675

Get to your doctor and get tested for a thyroid imbalance. I have fibrymyalgia also, with a thyroid imbalance. I used to be so cold all the time. Now that I am on the correct amount of Synthroid, it is much better. For the fibro, I take a serious amount of magnesium with malic acid/morning and night and also Mobic which is an anti-inflammitory and am doing really well except when I over do it......then I get flare-ups. Hope this helps. Barbara

Guest DanceswithWolves

Exactly why I want to move somewhere WARM!

I have been getting chills for quite a while now. Mostly in my hands. The other day I sat in BK eating lunch with my gloves on and drinking a cup of coffee.

So, Kelp is good for chills? Hm-mmmm....I have been taking magnessium supplements every morning too. I must drink like 4 cups of tea per day!

What exactly are the symptoms of Fibro? I heard about that condition. I ache every day and my bones "crack" when I stretch or move. Is that a symptom?

Jenn2005 Contributor

My husband gets very cold also. Especially his feet but I have noticed lately with the weather being cooler that he is can't seem to stay warm enough. His thyroid was tested and is normal so I'm assuming its just all part of the Celiac package.

Jennifer

jenvan Collaborator

You could get cked out for anemia, if its a possibility. My feet and hands are always cold, esp this time of year. If you ever get reynaud's there are some helpful hints to combat numbness and swelling. I have that, but after realizing what it was, it can usually be controlled.

elisabet Contributor

My son had very cold hands and feet,now after about 7 month to gfdfsf diet,his body tempreture is normal.

DonnaD Apprentice
You could get cked out for anemia, if its a possibility. My feet and hands are always cold, esp this time of year. If you ever get reynaud's there are some helpful hints to combat numbness and swelling. I have that, but after realizing what it was, it can usually be controlled. What tips?

I have looked up reynaud's but I'm not sure if that fits my cold feelings what exact symptoms do you get Jenvan?

Barbara, I have been checked for thiroid 2 years ago and was told it was 'normal'I think they only did one test and understand that false negatives are common. I have made an appointment with my GP and will ask to be retested for thiroid and anemia and bone density scans. I will have my Entrolab results by then.

Danceswithwolves: Fibro where to start!

"What exactly are the symptoms of Fibro? I heard about that condition. I ache every day and my bones "crack" when I stretch or move. Is that a symptom?"

It certainly is, my neck cracked for years before I had any actual pain. My knees make a massive noise especially when I go upstairs, its really loud! going up stairs is a huge problem for me.

I also have to exercise for 30 mins every day on my treadmill or I feel totally exhausted, in pain and depressed all day. I also take a lot of vitamins and add linseeds to my home made muslie (for the IBS-C)In the summer as long as I pace myself I don't feel too bad. Winter sucks!

Symptoms are - x = I have them,

Generalized Pain x mainly upper back, neck, shoulders, knees.

Fatigue x

Morning Fatigue x

Stiffness x

Tired proir to extertion x

Sleep disturbances xxx I fall asleep OK but wake at 3am and can't get back to sleep.

Morning Stiffness xx

Headaches -dont normally get any

Tenderness x

Numbness and tingling - in feet and hands x

Swollen feeling of tissues -dont get this

Dizziness -dont get this

Sensitivity to noise x

Sensitivity to smell x

Easily stressed x x x x x x x

Menstrual cramps (worse then normal) not really

Dry Mouth x -possible linked to meds

Inability to concentrate/brain fog is a huge problemx x x

Forgetful xxxxxxxxxx!

Irritable Bowel Syndrome xx - very much connected to diet.

Mood Swings xx

Blurred Vision xx

Heart Palpitations

Cold extremeties xx

Low Grade fever ;only occasionally

Allergies x

Restless Legs

Muscle Twitching x

Tinitus xx-drives me mad at night!

Night Sweats -dont have them but my fm sister does.

Migranes - I dont have these

Breathing problems -iv got a dry cough -seems to be linked to dairy

Itchy skin -only sometimes

Rashes -odd one on my face from time to time, was diagnosed as sebhoriac dermatitus (can't spell it!)

TMJ - bruxism-I grind my teeth so much I'va fractured 2 and spent a fortune getting gold caps. I have a mouth guard but can't sleep in it as I clench all night...

Depression - thank god for Prozac!

I also have:

Irritable bladder -controled by drugs now.

Very low pain threshold & pain killers needed in massive doses (i.e. had to have a huge dose of morphein after a simple day surgery as they could not control the pain, other people who had the same op just had 2 paracetamol!!)

Dowagers hump - x this could be linked to bone loss so I'm going to get it checked out.

I also have hypermobile joints (then bend too far the wrong way)

Chronic pain syndrome (shoulder)

really bad neck pain, I'v had some of the nerves 'cooked' by radiofrequency at the Pain Clinic to stop the pain signals but its not much better.

Weight gain - can't lose an pound unless on Atkins (no carbs, grain etc)

Alcohol - get legless on 2 glasses of wine

IBS and Fibro are 'waste basket' diagnosis and the symptoms are very similar to lots of other auto-immune illnesses, I only found out about the link between fibro and gluten on this forum a few weeks ago and am still investigating associated illnesses and genetic links. Many others on this forum also have Fibro and IBS. I'm only 42 and feel like an old woman!

Almost my entire family have the same problems so I thought it was normal to feel this way :(


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
Is there any thing else I can do other than wear an extra pair of socks and turn the heating up even higher?

1. determine if you're diabetic - foot problems, including temperature regulation - are common in diabetics

1a. talk to your doctor about other causes of this problem. the tingling, in particular, is worriesome.

2. rather than wearing an extra pair of socks, get a better pair of socks. it'll be more expensive, but it's worth it. now's a good time to buy, as well. fleece socks, for everyday wear, or thick, wool socks, are going to be much more insulating than cotton socks.

3. get a good pair of slippers to wear while you're at home. a pair of down slippers would be best (REI has them on sale for $15), as they are very insulating.

4. consider getting a footbath, particularly one with a vibration massage, to encourage improved circulation through your feet. (getting a foot massage - even an inexperienced one from a spouse - is also good in this category)

5. get some additional weight bearing (on your feet) exercise, if you don't get much already, also to encourage improved circulation through your feet

jenvan Collaborator

Donna-

No, doesn't sound like you have reynaud's right now. Just something to know about for the future...I developed mine last year, but had always had freezing hands and feet. Tiffany had some good ideas on prompting circulation too. Also, another thought...for my freezing hands, I use fingerless gloves at work...keeps my hands and fingers warmer while I'm typing etc.

mytummyhurts Contributor

I have reynaud's now too, but it only started last year, right when all my celiac symptoms got bad and before I was diagnosed with mixed connective tissue disease. But, like Jen said, even before the reynaud's I always had really cold hands and feet. With the reynaud's now, not only are they cold but they turn numb and white, purple, red, etc. I found something that says is supposed to help keep your hands warm. They are called heatbands, www.heatbands.com, and I just ordered some. They go around your wrists and are supposed to keep your hands warm, by keeping your wrists warmer and promoting blood flow. Has anybody tried them? I ordered them, but haven't gotten them yet. My hands are so cold at work, I put a space heater on my desk, but that gets in the way and blows papers around.

tiffjake Enthusiast
I am sitting here with really cold feet! They feel a bit numb but have a strange tingle! Once they have got this cold the feeling starts travelling up my legs to my knees. My hands are also cold but not as bad as my feet. I have fibro and have always been the 'cold' one. At work I was famous for sitting almost on top of the radiator. I was always nagging my kids to wrap up warm but realise now that they just don't feel the cold in the same way that I do. I have noticed that it is not so bad if I take kelp tablets.

Is there any thing else I can do other than wear an extra pair of socks and turn the heating up even higher?

I would look into the Anemia, specifically a b12 anemia. I have pernicious (aka, megaloblastic) anemia where the B vitamins are not absorbed into the bloodstream. I used to have terrible tingling in my hands and feet, and I still have a hard time when it gets chilly out because my hands are already cold and so they get double cold! I wear gloves a lot, but not nearly as much as I used to before taking daily B12 sublingually. It is important to take the sublingual (or injection) because taking it orally will not help with absorbtion problem-type anemia's. I know that GNC's sublingual B12 is Gluten-Free, and it says is on the box so you can double check if you want to! Hope that helps!

I would also second what Tiffany (thats my name too!) wrote about working out and the footbath. Increasing circulation helped with me too! Hope that helps! (DO go to your doc before trying anything, it might be something small, but it might be something bigger. When I got my B12 anemia diagnosis, I was so low that I needed shots every day for a while to get my levels up)

Rusla Enthusiast
My husband gets very cold also. Especially his feet but I have noticed lately with the weather being cooler that he is can't seem to stay warm enough. His thyroid was tested and is normal so I'm assuming its just all part of the Celiac package.

Jennifer

Has your husband had his thyroid antibodies checked? Just because the blood test comes back normal doesn't mean there is not something going on. I have been cold my whole life, hands and feet. My antibodies were 3.5 times the normal. After being on Synthroid I do not get cold like I did unless I forget to take my Synthroid.

DonnaD Apprentice

Please can someone tell me the exact tests I need to ask for. Mr GP normally orders the absolute minium but I have a 'real reason' to ask to be tested for various things now that my D has just had her celiac disease diagnosis . So which actual tests for Thyroid, anemia, diabeties should I ask for?

I do actually take a LOT of high strength vits, and feel worse if I forget them.

jenvan Collaborator

Abby ! HI :) Let us know about those little hand warmer thingys :)

Donna-

Go here to read on anemia test. 3rd paragraph highlights what you should have done. If you need more info on anemia etc, let me know. I am one of the ones who dealt with it for a while: Open Original Shared Link

Thyroid: go here to see a list of the tests. If you see your doc and just tell him you want to be tested for various thyroid dysfunction, he can order a test to cover the different possibilties (hypo, hyper, hash's etc): Open Original Shared Link

Diabetes test: Open Original Shared Link Again, just ask your doc. He or she may want to do a HbA1c test, which can give a brief history of your blood sugar levels.

Hope the info helps get you started :)

Do you exercise?

DonnaD Apprentice
Abby ! HI :) Let us know about those little hand warmer thingys :)

Donna-

Go here to read on anemia test. 3rd paragraph highlights what you should have done. If you need more info on anemia etc, let me know. I am one of the ones who dealt with it for a while: Open Original Shared Link

Thyroid: go here to see a list of the tests. If you see your doc and just tell him you want to be tested for various thyroid dysfunction, he can order a test to cover the different possibilties (hypo, hyper, hash's etc): Open Original Shared Link

Diabetes test: Open Original Shared Link Again, just ask your doc. He or she may want to do a HbA1c test, which can give a brief history of your blood sugar levels.

Hope the info helps get you started :)

Thanks Jenvan

This is really helpful, I will print out a list and take it with me!

Do you exercise?

Yes, 5-6 times a week, I usually do 15 mins on my treadmill and 15-30 mins on the crosstrainer (this really helps my knees and I am much better at getting upstairs now) I also do 'Alexander physio' for 15 mins, this is mainly lying on the floor with my back in the correct position and a book under my head to lenghten my neck (although my dowagers hump isn't looking any better at least it isn't so painful now). I used to do resistance machines at the gym but found that made things worses and I got too tired too quickly. I don't have much energy and sleep badly on the days I can't exercise so am quite good at doing it!

watkinson Apprentice

Hi everyone,

Have you looked into peripheral neuropothy? It's nerve damage caused by the celiacs. My hands and feet were always numb and tingling, with shooting pains going up and down my arms and legs. since going gluten-free over 2 years ago the numbness, tingling and pains are virtually gone (after suffering these problems for years.) But they are still ALWAYS freezing. I don't know if there is any treatment or not, I haven't looked into it. One thing I asked for for Christmas though, is those battery opperated warming socks!!! Yeah!!! Can't wait to see what they are like.

Wendy :D

DonnaD Apprentice
Hi everyone,

Have you looked into peripheral neuropothy? It's nerve damage caused by the celiacs. My hands and feet were always numb and tingling, with shooting pains going up and down my arms and legs. since going gluten-free over 2 years ago the numbness, tingling and pains are virtually gone (after suffering these problems for years.) But they are still ALWAYS freezing. I don't know if there is any treatment or not, I haven't looked into it. One thing I asked for for Christmas though, is those battery opperated warming socks!!! Yeah!!! Can't wait to see what they are like.

Wendy :D

Hi Wendy

I'v googled it, and it could be a possibility. My feet are not cold all the time just not in proportion to the temperature i.e. I always have the heating turned up to 20c. - I'm in winter woolies and my daughter is walking around in a t-shirt...

I guess it is one more test to add to my ever increasing list when I visit my GP!

  • 1 year later...
givingthanx Newbie
Hi everyone,

Have you looked into peripheral neuropothy? It's nerve damage caused by the celiacs. My hands and feet were always numb and tingling, with shooting pains going up and down my arms and legs. since going gluten-free over 2 years ago the numbness, tingling and pains are virtually gone (after suffering these problems for years.) But they are still ALWAYS freezing. I don't know if there is any treatment or not, I haven't looked into it. One thing I asked for for Christmas though, is those battery opperated warming socks!!! Yeah!!! Can't wait to see what they are like.

Wendy :D

Hi. I have shooting pains in my limbs too! Now I KNOW I'm gluten sensitive (as if going gluten-free and getting better isn't proof enough. I had serious bowel symptoms and fatigue and weakness so bad that washing five dishes was a difficult job to attain. I got totally better when went off gluten)

Anyway, I have two DQ1 genes, which EnteroLab says is the combination most likely to have pretty bad periperal neuropathy symptoms.

Real interesting. I wonder what, specifically, is causing the peripheral neuropathy. I was afraid initially of Vitamin B12 deficiency. I don't have insurance. Plus I just lost my job. I went to a free clinic, but the doctor there, though nice, knew NOTHING about gluten sensitivity - even got bothered I was self diagnosing off the internet and told me to start taking gluten again. So I'm not really in a position to get good medical diagnosis at this time. I did invest in getting the gene test from EnteroLab. I need more money before I can do anything else.

Not only did I get better the first time I got sick, but I got sick again after taking communion a few weeks later - with less severe, though obvious and marked, symptoms.

This is bizarre. Sorry guys, but this is just SO weird.

georgie Enthusiast

When you say your B12 is low normal - what was the # ? Peripheral Neuropathy can start when B12 gets <400 which is still 'in range' in some areas. My pins and needles responded to the B12 jabs almost immediately but as I have had such a late dx - I needed a very intense loading dose of weekly jabs, and now still need them 3 weekly. Your Ferritin is very low - do you have meds for that ?

Tests for Thyroid - TSH ( can be useless ), Free T4, Free T3, and Antibodies. I used to be cold all the time but since taking Armour I have felt great - can wear T Shirts again ! And not have to wear 5 layers of jumpers !

Nevadan Contributor

Check out the topic posted today "Sub-laboratory hypothyroidism" !!

flowergirl Rookie

Yes, I have always had really cold feet. It improved significantly after going gluten free. I cannot say if this was due to celiac in specific because a lot of my problems (deficiencies) improved after going gluten-free. Blood results show how my anemia have improved (iron) and I have long, beautiful nails for the first time in my life (calcium). I also don't have muscle cramps in my legs anymore and I sleep reasonably well now (magnesium). I am taking home made kefir to aid the Vitamin B deficiency and my anxiety is a lot less than before. I also take flaxseed oil and coconut oil that speeds up my metabolism and I have been using hemp oil for its various properties. It is great to be able to walk around the house in summer without having to constantly wear socks and slippers. :rolleyes: I hope you find a solution because it is really very anoying.

darlindeb25 Collaborator

Givingthanx--taking B12 can not hurt you. Our body eliminates that which we do not use. I take 2400mcg (which is 2 mg) of B12 daily and my B12 just stays within the normal range. It is very difficult when you do not have medical insurance to cover testing. I didn't have insurance until just a little over one year ago and testing is so expensive. Try the B12 and see if it helps. It doesn't work overnight and sometimes when and if nerves heal, they will feel tingly, numb, prickly, etc even while healing. Check out neuropathy forums, Neurotalk and Braintalk are very good forums.

larry mac Enthusiast

Just in case anyone with cold hands & feet is smoking.

I'm sure everyone knows that smoking inhibits circulation to the extremities. This has been well known and proven for a long time. Smoking is a serious mental sickness.

I smoked for 31 years; quit 10 years ago. My wife still smokes, even though she has good reasons beyond the obvious, common ones for quitting (she has chronic fatigue syndrome & fibromyalgia). We have a smoke-free house however. She's got a nice chair, cable tv, etc in the garage, anyone needs to smoke does so out there.

best regards, lm

givingthanx Newbie
Givingthanx--taking B12 can not hurt you. Our body eliminates that which we do not use. I take 2400mcg (which is 2 mg) of B12 daily and my B12 just stays within the normal range. It is very difficult when you do not have medical insurance to cover testing. I didn't have insurance until just a little over one year ago and testing is so expensive. Try the B12 and see if it helps. It doesn't work overnight and sometimes when and if nerves heal, they will feel tingly, numb, prickly, etc even while healing. Check out neuropathy forums, Neurotalk and Braintalk are very good forums.

Hi. Thanks for the advice. I had wondered if it was caused by B12 deficiency. I had bought a multivitamin which has a lot of B12 in it, but I have forgotten to take it for a week. You've reminded me. Thanks.

As for cold hands and feet (since that is the subject of this thread) - yes, I have cold hands and feet. I just feel cold in general. Usually, when I go someplace, I keep my coat on. A lot of people think that's weird.

Mary

georgie Enthusiast

How low was your Vitamin B12 ? What is it caused by ? If you have peripheral neuropathy caused by low B12 - oral supps probably are not for you. It means you may have a more severe B12 deficiency caused by Pernicious Anaemia or Gastritis or malabsorption and you need B12 shots for that. PN Can start when your B12 drops below 350. I have PA - an autoimmune disease which means I lack Intrinsic Factor in my stomach to absorb B12 from my food. An oral supp would do nothing for me. I need shots every 3 weeks. Due for one now - can feel feet tingles coming back - and that is 18 days since my last injection.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748

    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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

    • klmgarland
      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
      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
      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
      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.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.