Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

ShayFL Enthusiast

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

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

ShayFL Enthusiast

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

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
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

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

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

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

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

Thanks RG!!

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

AliB Enthusiast

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
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

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
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

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

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. - trents replied to Di Wallace's topic in Related Issues & Disorders
      1

      Mucus discharge

    2. - trents replied to ARSTONE's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Feel Good gluten free chicken soup dumplings

    3. - knitty kitty replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Hidden Gluten in distilled vinegar

    4. - Di Wallace posted a topic in Related Issues & Disorders
      1

      Mucus discharge

    5. - ARSTONE replied to ARSTONE's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Feel Good gluten free chicken soup dumplings


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,824
    • Most Online (within 30 mins)
      7,748

    Maciek
    Newest Member
    Maciek
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      We usually see mucus in the stool in those with undiagnosed celiac disease and those not adhering to a gluten free diet. However, the mucus could also be coming from lower down in the intestinal track. I would seek a physician consult. You might also check into getting a follow-p endoscopy/biopsy on the small bowel to check for healing progress since going gluten free.
    • trents
      @ARSTONE, not to be picky because there has been evolution in the terminology with regard to gluten disorders. And the terms "gluten intolerance" and "gluten sensitivity" are still used by some interchangeably. But with time, "gluten intolerance" has become synonymous with celiac disease with "gluten sensitivity" referring to NCGS (Non Celiac Gluten Sensitivity). Having said that, whatever it may be, apparently there is an ingredient in that product that doesn't agree with you.
    • knitty kitty
      @Manaan2, You may want to consider switching from Miralax (polyethylene glycol) to magnesium citrate and Thiamine supplements.   When I was prescribed Miralax for constipation, I developed worsened gastrointestinal problems, including worsening leaky gut syndrome.  Since polyethylene glycol is a synthetic chemical made from petroleum or coal byproducts, I was uncomfortable with that.   Miralax can cause poor vitamin absorption, flushing vitamins and minerals away before they can be absorbed.  Miralax can cause electrolyte imbalances, meaning low magnesium.  Low magnesium levels can cause constipation.  Low Thiamine Vitamin B1 can cause constipation as well.  Magnesium and Thiamine work together to make life sustaining enzymes.  Without sufficient thiamine and magnesium, the gastrointestinal tract slows down resulting in constipation, a sort of catch twenty-two.   I quit taking Miralax.  I took a form of Thiamine, Benfotiamine 250-300 mg, at the beginning of every meal and 200mg magnesium citrate or magnesium glycinate or magnesium l-threonate (Neuromag) at the end of every meal.  My constipation resolved quickly.  When my stool got too loose, I simply reduced the amount of magnesium.  I did not reduce Benfotiamine which has been shown to promote intestinal health and reduce leaky gut syndrome.  If thiamine at night gives too much energy to fall asleep at night, skip the Benfotiamine at the last evening meal. Blood tests ate not accurate measures of vitamin sufficiency.  The best way to check for Thiamine insufficiency is to take it and look for health improvement within a few days.  Thiamine is water soluble, easily excreted in urine if not needed.  Thiamine is safe and nontoxic when used in high doses.  No harm in trying, just to rule this out.   Best wishes.  Do keep us posted on your daughter's progress!
    • Di Wallace
      I don't know if anyone can help. I was diagnosed with celiac last June. Since going gluten free the diarrhea has stopped, in fact things have gone the other way. What is bothering me is the occasional rectal mucus discharge. I have no other symptoms and it doesn't happen very often. As I haven't seen anyone since my diagnosis, I don't know if this is normal or not
    • ARSTONE
      The issue is I'm not actually celiac but gluten intolerant. So do t know why I am so sick from this. It's been two days. 
×
×
  • Create New...