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

Cold All Of The Time....

Shawn

By Shawn
in Coping with Celiac Disease

Recommended Posts

Shawn Apprentice
Shawn
Posted

Hi -

I'm new to this - only been gluten-free for a month and a half. I am so cold all of the time now!!! I'm on the right dose of thyroid. I'm wondering if anybody else has experienced this, and if so, what can we do about it? I've lost some weight since going gluten-free, but don't think that has anything to do with it since I still have a little insulation. :huh:

I wore a huge fleece onsie and a scarf to bed the other night. My husband said, "but we've only been married four years!!". It was the warmest thing I could find.

Help!!!!

Thanks,

Shawn

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Shawn,

My first thought would be thryoid, but you have addressed that.

Other though would be low blood pressure.

Other than that, I have no experience with that.

There are alot of smart people here with a vast amount of experience.

CarlaB Enthusiast
CarlaB
Posted

If it's not your thyroid, I don't know. Are you getting enough water? I get cold when I'm dehydrated.

Shawn Apprentice
Shawn
Posted
  • Author

Thank you!

I thought thyroid was supposed to improve after being off gluten. My energy level seems fine, though the idea that I have to get bundled up to go anywhere is a bit deterring. My hands and feet are FREEZING!

Blood pressure? It's pretty low, but it always has been.

Shawn

Corkdarrr Enthusiast
Corkdarrr
Posted

Shawn, I'm really cold all the time, too. It seems to have gotten worse lately. I"m always bundled up. So no advice but WHERE did you find an adult-sized fleece onesie?!!?

Does it have the feet on it like the ones for little kids that make it fun to slide across the kitchen floor? :lol:

Seriously. I can't think of anything that would be more comfortable right now... :rolleyes:

Courtney

tarnalberry Community Regular
tarnalberry
Posted

pardon the obvious stupid question: what is the temperature in your bedroom? (not "what is the thermostat set to?" because that may or may not tell you much about your bedroom temperature.)

key Contributor
key
Posted

Caffeine can cause your circulation to not be as good. Do you drink caffeine? I know being thin makes me colder. Also if I drink too much caffeine.

Monica

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

Celiac.com Sponsor (A8-M):


Susanna Newbie
Susanna
Posted

Puzzling. Hmmm. Any chance you have Raynaud's Syndrome? I don't know a lot about it, but I know people with Raynaud's complain of cold hands and feet all the time. I'm a nurse, and I gotta tell you--people with autoimmune disorders in general (and celiac is autoimmune) complain of being cold a lot. Maybe do a web search on Raynaud's, and on autoimmune disorders.

Good luck.

Shawn Apprentice
Shawn
Posted
  • Author

Thank you for your responses!

I'm not just cold in the bedroom, I'm cold everywhere! (I wear my coat outside of my bedroom..)

By the way, my onsie doesn't have feet (I wear socks), and my mother bought it for me from Land's End when I was dating somebody she didn't care for :rolleyes:

I do drink a cup of coffee in the morning, but not much caffeine after that. I've heard of Reynaud's syndrom - I'll look into it more...

Shawn

olalisa Contributor
olalisa
Posted

my mother bought it for me from Land's End when I was dating somebody she didn't care for :rolleyes:

:D:P:):D !!! I Can't stop laughing!!

I'll have to remember that one with my 19 year old daughter!

aaascr Apprentice
aaascr
Posted

being cold also relates to anemia...

check iron and b12 levels?

daisey Newbie
daisey
Posted

Hi there, I am always freezing. I sleep with a heating pad every night. I know it sounds nuts, but I am truly cold. My thyroid is fine. I have always been cold, but after going gluten free--it is even worse. Sometimes in July and August I have to wear a sweater!!!!!! So Shawn, bundle up, baby, it's cold outside.

Carriefaith Enthusiast
Carriefaith
Posted

Try wearing thermal underwear under your clothes, I find that helps me a lot. Also try wearing wool and layer your socks :)

sherryGF Newbie
sherryGF
Posted

Shawn, have you had your Ferritin level checked? I stay uncomfortably cold, too, and suffer from poor iron storage. At the time of my Celiac disease diagnosis 6 years ago, I had microcytic anemia, since iron is poorly absorbed through the damaged intestinal mucosa. After several iron infusions, my hematocrit stayed stable, until recently, when my ferritin level (measurement of iron stores in the body) was once again noted as low. Low iron levels are a frequent cause of feeling cold--it might be worth checking out!

RiceAddict Rookie
RiceAddict
Posted

Just have to chime in here. I too am cold all the time. I share an office with a Minnesota native and have given in to her comfort level so I wear my heavy winter coat inside while working. My Apt is set at 78 so I feel fine in there. Thyroid has checked out normal but I too suffer from anemia and get shots every 2 weeks plus take iron supplements. When I get low blood sugar I get even colder (could be due to sweating though) When I was a boy scout we were taught to eat constantly on cold weather camping trips to keep calories burning. Internal body heat is so much better than external (i.e. standing next to a heater, wearing long underwear, or using heating devices) Try having an electric soup bowl or hot plate at work if you can and eat hot soup or anything for that metter and get lots of exercise.

A

daffadilly Apprentice
daffadilly
Posted

after checking into all the other possibilities and in addition to I would like to second the exercise. Some of us need that extra boost to get the circulation going.

Guest AutumnE
Guest AutumnE
Posted

I am really cold too and its not from lack of insulation. My sister and my mom are the same way. We all have hypothyroidism but its in the normal range at least for me.

Regarding the footed pajamas here is two places online that sell them-

Open Original Shared Link

Open Original Shared Link

I should get dh and me a pair. I know we both would use them.

Mary Contrary Rookie
Mary Contrary
Posted
Hi -

I'm new to this - only been gluten-free for a month and a half. I am so cold all of the time now!!! I'm on the right dose of thyroid. I'm wondering if anybody else has experienced this, and if so, what can we do about it? I've lost some weight since going gluten-free, but don't think that has anything to do with it since I still have a little insulation. :huh:

I wore a huge fleece onsie and a scarf to bed the other night. My husband said, "but we've only been married four years!!". It was the warmest thing I could find.

Help!!!!

Thanks,

Shawn

Wow, me too me too...had my thyroid rechecked as well and it is ok, on the right dose...but have been freezing this last 8 weeks off of gluten..that was always my big clue my thyroid was out of whack, I'd get so COLD..especially my hands and feet.....but even before I got off of gluten, the last 3 months since I have been having major D problems, I have been freezing to death...and I am also going through menopause, I now welcome the hot flashes... :rolleyes:

nikki-uk Enthusiast
nikki-uk
Posted

My hubby has alway's felt the cold more than most - and I always thought it was because he had no 'meat on his bones' !

Since his dx of celiac disease (2 yrs ago) he's a good weight now but still frozen all the time when everyone else is ok.

Funny thing is he always feels hot to touch (like a glowing fire!)- even though he feels cold.

:blink::blink:

Mary Contrary Rookie
Mary Contrary
Posted

I was extremely schocked when I found out my thyroid ws right on track, I haven't been this cold since my TSH was 119.... :o

moceansylvia- Newbie
moceansylvia-
Posted

Hi -

I'm new to this - only been gluten-free for a month and a half. I am so cold all of the time now!!! I'm on the right dose of thyroid. I'm wondering if anybody else has experienced this, and if so, what can we do about it? I've lost some weight since going gluten-free, but don't think that has anything to do with it since I still have a little insulation. :huh:

Oh My God, I have recently been diagnosed and encountered being cold and thought it was just me coming down with something. Just when I feel discouraged, I logged into your discussion and felt great to hear others with similar situation. Thank you for your honesty and making me feel not like a freak. :lol: thanks sylvia

Mary Contrary Rookie
Mary Contrary
Posted

It does make ya feel better to know you/we aren't alone...I would have bet the farm my thyroid was all out of whack again...but it must have something to do with this...

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. lil-oly
      - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye.
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    5. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    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)

  • Upcoming Events

  • Posts

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.