• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Raynaud's Issues Or Neuropathy Issues?
0

17 posts in this topic

I was diagnosed with Raynaud's as a teenager and recently diagnosed as a celiac in middle age. Now I also see that I am textbook for sjogren's.

I am trying to determine what neuropathy actually feels like. I have had a numbness/tingling issue in my left hip/pelvis that travels down to my foot when it is really acting up badly. It also occurs in my left arm when i am in a quiet, no fidgeting allowed sitting position. GP wants me to do a mri for lower back issues but I am holding off for a bit until I can fit more puzzle pieces together. When I do a mri, I want it done completely. I'm not spending the money to go back in. Get it right the first time is my motto. I also have tingly sensations on the back of my neck that make me think bugs are crawling on me.

SO on to the issue of my nighttime problems. I thought this was all raynaud's related but maybe it's not. My feet are always phenomenally cold at bedtime in the winter. I preheat my bedroom with an electric heater. I wear long johns under my night shirt and have upgraded from regular weight socks to wool boot socks- I am a sight to behold! Oh and now I am even wearing mittens to bed. Once I lay down, I get even colder. My body gets rigid as I curl up to stay warm. In the morning my muscles hurt from being so cramped up. I have trouble with the leg tingling so much at night that it's really difficult/painful to sleep on my left side. I have bad acid reflux so left side sleeping is preferred by me to keep the acid in my stomach. Between the coldness and the tingling, I am not sleeping well. Today I plan to buy an electric blanket. I moved form the NE US to the SE. It's not really all that cold here in NC.

Can you all give me your 'expert,' I live with this kind of thing, opinions? I love the information I get from this forum by reading past threads. By hearing real life experiences, I realized that my swallowing issues were sjogrens and not caused by reflux. Apparently I didn't use the proper 'terms' to describe my problems so that my physicians- GP, rheummy, eye, and dentist would know what I was referring to. Geesh, what's a girl to do?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hi Jen Z,

Your mention of the cold symptom is interesting and I'm curious to see if others write in about it. I've had pretty severe neuro issues for about a decade (have only been gluten-free for 3 months). Numerous times I'd have icy feet that I just could not warm up without a heating pad. The past two weeks I was glutened badly and I've been horribly cold; the other day I was wearing 2 long sleeve shirts, long underwear bottoms, jeans and was under 3 blankets and could Not get warm. When I checked our indoor thermometer it was 70 degrees! So although I've never read that anyone else has this particular reaction, it seems it's one of mine!

1

Share this post


Link to post
Share on other sites

To address the 'cold' part of your question -

I have a heated mattress pad that I turn on before I go to bed.

I have a heated 'throw' at the bottom of my bed that I turn on when I get into bed (it heats up faster and turns off after 3 hours).

I have 2 down, and one light comforter on my bed.

I have micro-fleece sheets.

I'm a happy sleeper now-a-days. :)

1

Share this post


Link to post
Share on other sites

I was diagnosed with Raynaud's as a teenager and recently diagnosed as a celiac in middle age. Now I also see that I am textbook for sjogren's.

I am trying to determine what neuropathy actually feels like. I have had a numbness/tingling issue in my left hip/pelvis that travels down to my foot when it is really acting up badly. It also occurs in my left arm when i am in a quiet, no fidgeting allowed sitting position. GP wants me to do a mri for lower back issues but I am holding off for a bit until I can fit more puzzle pieces together. When I do a mri, I want it done completely. I'm not spending the money to go back in. Get it right the first time is my motto. I also have tingly sensations on the back of my neck that make me think bugs are crawling on me.

SO on to the issue of my nighttime problems. I thought this was all raynaud's related but maybe it's not. My feet are always phenomenally cold at bedtime in the winter. I preheat my bedroom with an electric heater. I wear long johns under my night shirt and have upgraded from regular weight socks to wool boot socks- I am a sight to behold! Oh and now I am even wearing mittens to bed. Once I lay down, I get even colder. My body gets rigid as I curl up to stay warm. In the morning my muscles hurt from being so cramped up. I have trouble with the leg tingling so much at night that it's really difficult/painful to sleep on my left side. I have bad acid reflux so left side sleeping is preferred by me to keep the acid in my stomach. Between the coldness and the tingling, I am not sleeping well. Today I plan to buy an electric blanket. I moved form the NE US to the SE. It's not really all that cold here in NC.

Can you all give me your 'expert,' I live with this kind of thing, opinions? I love the information I get from this forum by reading past threads. By hearing real life experiences, I realized that my swallowing issues were sjogrens and not caused by reflux. Apparently I didn't use the proper 'terms' to describe my problems so that my physicians- GP, rheummy, eye, and dentist would know what I was referring to. Geesh, what's a girl to do?

The cold extremeties are from Reynaud's. My feet are always freezing but funny enough, they don't seem that cold to me and it doesn't bother me. When my feet brush up against my husband, he jumps. My hands are always cold too but they don't blanch white that much anymore since I have been gluten-free. But the coldness remains. It is my new normal. :P

I don't go to doctors about these things because they can't do anything about it.

I have Sjogren's and Reynaud's and just use Biotene mouthwash for the dryness, drink plenty of water to stay hydrated and chew gum disgreetly to promote saliva production. Not much else you can do, unfortunately. You will have swallowing issues with Sjogren's so cut up your food small and keep water available to help get it down. You'll find ways to combat the symptoms that work for you.

2

Share this post


Link to post
Share on other sites

I've always had cold feet and hands but in the last few years it has gotten worse to where I am much like you: dressing up to go to bed. In the day, my bare skin feels like an ice pack is placed against it.

Regarding the pain up the left arm, I get something similiar where it feels numb/dead like. Also My hands falls asleep when I'm holding a book or the phone.

I'm one week into begin gluten free after going for the blood test. At this point I don't notice much difference except the deadness in my left arm has gone.

Hope this helps.

1

Share this post


Link to post
Share on other sites
Ads by Google:


My sister 'has' Raynaulds and she sounds exactly like you. I am convinced she has celiac but refuses to get tested for it. Raynaulds can be a secondary disease to celiac.

0

Share this post


Link to post
Share on other sites
Raynaulds can be a secondary disease to celiac

Raynaud

0

Share this post


Link to post
Share on other sites

Have you had your vit levels checked? Because of the tingling I wonder if it could be linked to your B12. I was having funny crawling sensations on my legs, nose and cheeks. Kind of felt like I had a hair that was not there or like some bug was under my skin but I would look in the mirror and nothing was there. I told my doc about it and he looked at me like I was crazy so I researchd it on the Internet and found it was linked to a lack of vit D. I started taking vit D and it went away.

Good to hear that I am not alone as far as being cold. Even my friends question my inability to hold heat. I thought it was possible thyroid issues but my tests are fine. I am like you all have mentioned here and have never known why. It is good info and I will look up Raynaulds Phenomenom.

1

Share this post


Link to post
Share on other sites

I wear two pairs of wool boot socks...in the summer. :ph34r:

I'm not kidding.

I am freezing all the time.

Wool socks are wonderful.

I have two wool blankets, a space heater, and if it's really bad and I'm chilled to the bone, I throw a blanket in the dryer and get it good and hot and then wrap up in it.

Sometimes if I'm lucky my son will do this for me after the blanky cools down. A true sign of love.

My thyroid levels are fine so they say. I have Hashimoto's though.

I've been known to use a blow dryer on my feet to get them warm.

I should just get an electric blanket huh?

1

Share this post


Link to post
Share on other sites

I have cold cold cold feet and hands too, feet mostly, and I just can't warm them up, doesn't matter what the temperature is in my house. I went to a rheumaologist with my laundry list of symptoms, and she said it can't be Reynaud's because my feet and hands are not blue <_< I read somewhere that not even half of patients have blue extremities :P I do get the blotchy look though when I go outside and get *really* cold.

I just wear thermal socks, and big fluffy slippers, I stick my hands in my armpits when they get really cold, and try to get my dog to sit on my feet when I can, his normal body temperature is about 101F ;)

1

Share this post


Link to post
Share on other sites

I have cold cold cold feet and hands too, feet mostly, and I just can't warm them up, doesn't matter what the temperature is in my house. I went to a rheumaologist with my laundry list of symptoms, and she said it can't be Reynaud's because my feet and hands are not blue <_< I read somewhere that not even half of patients have blue extremities :P I do get the blotchy look though when I go outside and get *really* cold.

I just wear thermal socks, and big fluffy slippers, I stick my hands in my armpits when they get really cold, and try to get my dog to sit on my feet when I can, his normal body temperature is about 101F ;)

I am also always freezing, as my mother is too. We both have reynauds. I dont know if that has anything to do with the coldness, but I am Gluten-Free for a month now, and am getting colder:-( It's honestly freekish how cold I get. My husband got me an electric blanket. That helps. We have a hot wood burning fireplace in a small room. That helps. Sometimes, I get so cold that I can't move. When that happens, I talk myself into a warm bath, which I slowly make my freezing way to. A hot bath is great! When you get out it sucks more than before you got in:-( Thermal and wool socks make my feet sweat, and cold wet feet just arent my bag. If I had to bet on it, I would for sure say that these constant shivers are somehow gluten related.

1

Share this post


Link to post
Share on other sites

For those who have been dx with Raynaud's, I have a few questions. From reading on the Internet it looks to me like there is no solution except to watch your exposure to cold? What did your doc say?

I am just wondering if this is worth mentioning to my doc. I have lived this way for over 20 years. If I get chilled I will be under the covers fully clothed for hours before my body warms up. It can be mid 40's outside and I will be wearing gloves and my finger tips will go numb, or my toes will go numb, and it's not even cold outside. When I get into a hot tub of water it actually feels like my feet are thawing. My solution is to wear alot of clothes, layers and lots of hot water!

1

Share this post


Link to post
Share on other sites

We have a bedwarmer, too. I was afraid of it because I was scared of it being a fire hazard, and I also have sensory issues so feeling the lines running through it bothers me a bit. But it is SO worth it! We turn it on a bit before getting in bed, and I can have my side on without heating up my partner's side of the bed. I try to turn it off or at least way down before I actually fall asleep. Between the bedwarmer, our house finally being insulated, and several down comforters, I finally can sleep.

ftr, I don't think I have Raynaud's (never evaluated for it) but it does run in my family and I do tend to be cold all the time.

1

Share this post


Link to post
Share on other sites

I was out dealing with the chickens when an ice cold rain started. I was only out in it for maybe five minutes, then a few more minutes after it eased up to finish what I was doing and lock of the birds. That was several hours ago. I'm dressed (now) in fleece pants, a fleece top, a fleece jacket, been wearing my warm slippers and I'm still a block of ice. I've just made more coffee and I'm tucking myself under fleece blankies and throws to see if I can un-numb my hands and feet.

No comments necessary - I just had to fuss for a minute. :P

1

Share this post


Link to post
Share on other sites

For those who have been dx with Raynaud's, I have a few questions. From reading on the Internet it looks to me like there is no solution except to watch your exposure to cold? What did your doc say?

I am just wondering if this is worth mentioning to my doc. I have lived this way for over 20 years. If I get chilled I will be under the covers fully clothed for hours before my body warms up. It can be mid 40's outside and I will be wearing gloves and my finger tips will go numb, or my toes will go numb, and it's not even cold outside. When I get into a hot tub of water it actually feels like my feet are thawing. My solution is to wear alot of clothes, layers and lots of hot water!

Being cold all over is not a symptom of Reynaud's, that is more in line with thyroid disease. Reynaud's will cause blanching and numbness in the hands and feet. I also have that happen with my feet when I get into a hot tub....it feels like they are defrosting.

I exercise twice a week at the gym and that really helps warm up the toes and fingers. However, after going gluten-free for awhile, the symptoms I was having dramatically improved. I no longer have to wear gloves when I grocery shop in the freezer section. The blanching, whiteness and numbness only occurs when it's freezing outside and it only happens on my middle finger (of all fingers!) at the very tips. I would say it's about 80% improvement with the gluten-free diet.

I was never evaluated for it. I went to the doctors and was listing my autoimmune problems when my hands went extremely white and then red when the circulation came flooding back. As she asked if I had been diagnosed with it, I just looked at her and raised my hands to show her. Who needs a doctor when something is so obvious? :blink:

1

Share this post


Link to post
Share on other sites

I've never been diagnosed but suspect I have it. My fingers don't turn blue but they do get pale (not super white, but pale), feel like the tips are being stabbed with knives, and get numb. People make fun of me because I bust out my mittens as soon as the weather drops to the low 50s. I can remember a time in high school when I was on the soccer team and the weather was brutally cold. At the end of the game I couldn't even turn the lock on my locker because my hands had gone numb.

I wish there was a good solution. If my feet get cold I change socks as room temp socks help once the current socks get cold. I also rely on my husband and my dog to warm me up!

0

Share this post


Link to post
Share on other sites

I suffer from cold (freezing) feet. My fingers can become somehow white but not always. My feet are very white and seem they have no life when touched everytime I feel cold. The worst is before bed I have to either warm my feet late at night and/or decide to do some sort of exercise/tasks to keep me moving for the last hour before bed. My feet can get too hot too when I walk alot, doing some housekeeping that makes me moving...those same frozen white feet are so hot and red then :blink::blink: Dont know makes my blood vessels are so confused and have clue of what moderation is.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,421
    • Total Posts
      930,467
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
  • Upcoming Events