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Neurological Symptoms - Strange Sensations - Healing?


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14 replies to this topic

#1 ShayFL

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Posted 24 June 2008 - 07:29 AM

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.
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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#2 RiceGuy

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Posted 24 June 2008 - 08:34 AM

Are you taking a methylcobalamin B12 supplement, like 3mg per day? I believe magnesium will also help in this area.
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#3 ShayFL

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Posted 24 June 2008 - 08:50 AM

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.
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#4 Rivergirl

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Posted 24 June 2008 - 08:07 PM

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.
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RiverGirl

#5 purple

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Posted 24 June 2008 - 10:37 PM

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?
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Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

#6 ShayFL

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Posted 25 June 2008 - 03:46 AM

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??
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#7 ravenwoodglass

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Posted 25 June 2008 - 04:12 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 ShayFL

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Posted 25 June 2008 - 05:23 AM

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. :)
  • 0
GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#9 RiceGuy

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Posted 25 June 2008 - 05:47 AM

Here are some links which may help:
http://www.herbs2000...mbness_ting.htm
http://www.articlesb...ing-354943.html
http://multiconditio...d-Tingling.html
http://www.naturalda...m...;cec=0&pm=5
http://www.indiapare...art08_004.shtml
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#10 ShayFL

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Posted 25 June 2008 - 06:45 AM

Thanks RG!!

I appear to be doing everything right. Now just to wait and see......
  • 0
GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#11 AliB

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Posted 25 June 2008 - 02:49 PM

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.
  • 0
Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#12 Rachel--24

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Posted 25 June 2008 - 03:39 PM

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:
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Rachel

#13 darlindeb25

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Posted 26 June 2008 - 04:30 AM

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.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#14 ravenwoodglass

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Posted 26 June 2008 - 04:57 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#15 ShayFL

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Posted 26 June 2008 - 05:03 AM

Yes and kelp/iodine can aggravate Hashimotos. So do be careful.
  • 0
GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!


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