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

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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    2. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      12

      gluten free cookie recipes

    4. - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

    5. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,910
    • Most Online (within 30 mins)
      7,748

    probinson3870
    Newest Member
    probinson3870
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
    • Charlie1946
      @cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!
×
×
  • 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.