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

Neurological Symptoms - Strange Sensations - Healing?

ShayFL

By ShayFL
in Related Issues & Disorders

Recommended Posts

ShayFL Enthusiast
ShayFL
Posted

I have migraines, neuropathy and vertigo. These are my main symptoms. Migraines are gone. Yeah!!!

The imbalance/vertigo/ataxia are unchanged.

My normal numb/tingly feelings have been replaced with that sensation you get when a foot was asleep but you wake it back up. It is different than my normal tingling. It is exactly like my arms/hands/legs/feet are "waking up". I am soooo hoping this is a good sign.

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

Are you taking a methylcobalamin B12 supplement, like 3mg per day? I believe magnesium will also help in this area.

ShayFL Enthusiast
ShayFL
Posted
  • Author

Yes. I am taking both of those. Mega B12 - sublingual methylcobalamin and Mag citrate. I am just wondering if my nerves might be "healing" and if others have experienced similar.

Rivergirl Apprentice
Rivergirl
Posted

Prior to going gluten free, my biggest symptoms were not GI related but included: migraines, hand and feet numbing, dizziness, eyes blurring, and a feeling as if someone was pouring hot water on my legs. Almost immediately after going gluten free, my migraines went away, numbing reduced, eyes no longer blur, I am no longer dizzy, and there is no feeling someone pouring hotwater on my legs.

I was so amazed how quickly everything disappeared.

purple Community Regular
purple
Posted
Prior to going gluten free, my biggest symptoms were not GI related but included: migraines, hand and feet numbing, dizziness, eyes blurring, and a feeling as if someone was pouring hot water on my legs. Almost immediately after going gluten free, my migraines went away, numbing reduced, eyes no longer blur, I am no longer dizzy, and there is no feeling someone pouring hotwater on my legs.

I was so amazed how quickly everything disappeared.

Hey neighbor! I finally found someone from Idaho. I used to live not far from the Snake River, near Marsing. Now I am bout 1 1/2 hours from there. We used to ride dirt bikes at Hemingway Butte. Ever hear of it?

ShayFL Enthusiast
ShayFL
Posted
  • Author

Thank you Rivergirl!

Did you have strange sensations as your body healed??

Yes, my migraines were also the first to go. Thank goodness!!

Im so glad to hear your dizziness went away. How long did that take? And the neuropathy. How long??

ravenwoodglass Mentor
ravenwoodglass
Posted

What you are feeling could be healing or it could also be a sign that you have gotten CC'd. If it is CC your GI tract should let you know a few days after the increase in the nerve symptoms. The neuro issues do take a long time to heal and some may not resolve completely. A lot depends on how long you have been effected and how severe the damage is. For me the ataxia still remains to some extent after almost 6 years but it is soooo much better than it was at diagnosis. I had the same effect as you with my migraines, I haven't had another one since starting the diet, unless I had a severe glutening. I had a great deal of nerve damage and had not had leg reflexes since I was a child due to neuro effects. 2 years after diagnosis I had my reflexes back and I am now able to walk almost normally. Hang in there, it took your body a long time to get as damaged as it did for you to be diagnosed and it will take a while to heal your nervous system but it sounds like you are on the track and progressing.

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted
  • Author

The neuropathy is actually better today and that strange "waking up" sensation is much much less today. So this gives me hope!! :D

I realize since I am deficient in Vit D and Iron (I am supplementing) that my body may simply be absorbing more (since I am not eating gluten) and these deficiences are getting better which may be what is improving my symptoms.

Hoorah!!!

I know we all heal at our own rates, but I do like to hear other people's experiences. Good news should be shared. :)

RiceGuy Collaborator
RiceGuy
Posted

Here are some links which may help:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

ShayFL Enthusiast
ShayFL
Posted
  • Author

Thanks RG!!

I appear to be doing everything right. Now just to wait and see......

AliB Enthusiast
AliB
Posted

I did get odd things with my left hand like it going numb if I was sat at the computer with my chin on my palm but other than that nothing really, until I went gluten-free.

A few days after I started the diet I started getting numb hands and prickly feet. When I looked it up it seemed to equate to a few things - I bought some B12 but meanwhile had had a blood test to check the level which came back ok so I didn't take much of those, but something else I picked up on was hypothyroiditis. I took some Kelp tablets for a few days and it eventually went away.

Whether it was the Kelp or just a natural progression I will never know, but whatever it was it worked!

I still get the occasional numb fingers when propping my chin so I take a few kelp tablets just in case! It doesn't happen very often and doesn't bother me much.

Weird that the numb and prickly happened AFTER I went gluten-free though. I have been trying to figure out why.

Rachel--24 Collaborator
Rachel--24
Posted
A few days after I started the diet I started getting numb hands and prickly feet.

I have these same symptoms before AND after gluten free...but never before I got sick. Before I restricted my diet I woke up with numb hands almost every day. My feet and hands would also get numb and tingly sitting at the computer...or anytime I was just sitting in one place.

After I cleaned up my diet it all went away....I didnt take vitamins or minerals...it just went away on its own. Now its totally predictable. I never have this problem unless I indulge in processed foods or other stuff that my body doesnt tolerate.....If I indulge I can be totally sure the next morning I'll wake up with numb hands.....even if I havent experienced it in months.

It'll only last for one day...unless of course I keep indulging....but usually I'm pretty good about keeping the symptoms at bay and I dont do things like that on a daily basis.

Today we had a bbq at work....so I ate what I wanted. My fingers feel a tiny bit tingly and I'm guaranteed to wake up tomorrow with numb hands....but that'll be the end of it.

For me its definately not related to vit/min deficiencies because it comes and goes too quickly and is totally predictable. I can expect it to happen when I eat processed foods.

My guess would be that in my case its caused by toxins circulating.....because my body isnt able to detox some of the food chemicals very efficiently. I also notice in my case that when my toxic load is higher my circulation is slowed down.....the blood just isnt flowing quite as freely (hypercoagulation). I think that has alot to do with why my hands are always numb the morning after I pollute my body. :rolleyes:

darlindeb25 Collaborator
darlindeb25
Posted

Many people suffer neuropathy from vitamin and mineral deficiencies. Many celiac's are very lucky to have their neuropathy symptoms reverse when they go gluten free...it's encouraging to hear so many of you doing so well. My symptoms never reversed, but they did stop progressing, which is great. I was diagnosed with carpal tunnel before I found out about celiac disease...it's been 10 yrs now.

As I have stated, at least I think I have, I now have a new neurologist, who seems to know a lot about the celiac/B12/neuropathy connection. I am looking forward to healing with his help.

I have small fiber neuropathy in my legs and feet, inoperable carpal tunnel in my hands, wrist, with some arm and shoulder involvement...migraine headaches, along with tension headaches. My new neuro just diagnosed sleep apnea, which I do have to do a sleep study still and next month I have another EMG w/needles scheduled on my lower body. We will see what's going on.

ravenwoodglass Mentor
ravenwoodglass
Posted
I did get odd things with my left hand like it going numb if I was sat at the computer with my chin on my palm but other than that nothing really, until I went gluten-free.

A few days after I started the diet I started getting numb hands and prickly feet. When I looked it up it seemed to equate to a few things - I bought some B12 but meanwhile had had a blood test to check the level which came back ok so I didn't take much of those, but something else I picked up on was hypothyroiditis. I took some Kelp tablets for a few days and it eventually went away.

Whether it was the Kelp or just a natural progression I will never know, but whatever it was it worked!

I still get the occasional numb fingers when propping my chin so I take a few kelp tablets just in case! It doesn't happen very often and doesn't bother me much.

Weird that the numb and prickly happened AFTER I went gluten-free though. I have been trying to figure out why.

I am glad you found something that worked for you but I do want to add a quick caution for those of us who have DH or suspect that we do. Kelp is high in iodine, the reason you took it for hypothyroid, but those of us with DH could suffer an intense breakout of lesions if we take it. Not saying for sure and for certain this would happen but thought it would be a good idea to put that caution in folks minds in case they break out and don't know what it is from.

ShayFL Enthusiast
ShayFL
Posted
  • Author

Yes and kelp/iodine can aggravate Hashimotos. So do be careful.

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. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748
    Deb baker
    Newest Member
    Deb baker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.