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Part II

That is one of the symptoms that made me decide to go gluten-free. I had  no
feeling plus jabbing pains in toes and fingers. I had been malabsorbing fat
and taking a low dose of Vitamin E helped bring back feeling but I still had
the jabbing pains. I am in the early stages of a diagnosis of Sjogren's
which often has peripheral neuropathies. Have you had any blood work for
Sjogren's? Doctors often start with ANA (anti-nuclear antibody) and if that
is positive then check SSA and SSB antibodies. 

Or did you have low Vitamin B12 for a while? Both my hubby (Crohn's) and my
mother (years undiagnosed celiac) have numbness in fingers from years of
malabsorbing Vit B12.



I was experiencing carpal tunnel symptoms this past winter and the EMG
stated it was mild. I went ahead with the surgery, only to find my hands
worse than before. So then the doctor throws out the possibility of
neuropathy. I didn't want to hear that.  I am in great health, not
overweight, nor diabetic, etc., so I wasn't buying it.   But I needed to do
something because it was horrible at night.  

 

I run a celiac support group and about a year before I had given a talk on
celiac and neuropathy.   One of my members took to heart the information
about vitamin supplements and went on the B Vitamins. She reported back in
less than a month that these did more for her than any doctor had done.

 

Remembering that, I talked to her about those vitamins, which were a B
Complex 50 taken once a day.  Also Lecithin 1200 mg. taken 2 x day.  The
third was a Sublingual complex of B vitamins including B12, and you put a
dropperful under the tongue once a day.  Within two weeks, my symptoms eased
so much I could sleep at night without splints and I could resume doing many
things.   The hand that had carpal tunnel still has at least two numb
fingers, but I can live with that as they were not that bad anymore.

 

So this is a good place for you to start if the symptoms are giving you a
lot of grief.   I know you have your own ideas about ridding more grains
from your diet.  Anything is worth a try.  I was skeptical at first about
the B vitamins, but a believer now.  A two month supply at the health food
store was not bad at all, perhaps about $25 for all three.    

 

I wanted to write re: your peripheral neuropathy note on the celiac board.
I'm a neuro celiac, and had terrible neuropathy before going gf. after going
gf i can always tell if ive been glutened becasue of nerve
pain/numbness/lack of coordination. I'd definitely check in with your gi to
make sure your ttg is low and youre not having other immune reactions (check
out your ESR, c-reactive protein, igg, iga, etc).

definitely also give weight to the posture/repetitive motion stuff- that
stuff can really hurt you and having an autoimmune can slow your healing and
exacerbate symptoms. i had a physical therapist tell me to double my
expected healing time due to autoimmunity. boo.

ps- also keep an eye out for diabetes which is a big deal and common in
celiacs. and is a direct cause for neuropathy good luck!

 

I had tingling in both feet and both hands, plus nerve pain (a constant
burning sensation)  in one forearm. My doctor prescribed hydroxocobalamin
(injectable B-12), and the nerve pain  and tingling was completely gone
within a few days. 

It is often caused by nutritional deficiencies, especially deficiency of B
vitamins. Are you a vegetarian? Being gluten-free should heal the gut, so
you shouldn't be having malabsorption.

 

Nothing wrong with going grain-free. I've been eating paleo for 16 years.
(Dairy-free for 17 years and GF for 22 1/2 years.)

 

You can bake with coconut and other nut flours.

I have diagnosed peripheral neuropathies (had an EMG and various tests at
the neurologist).  The neurologist is pretty certain that it was caused by
being undiagnosed for all those years.  Some days the burning and tingling
drive me nuts. I find it's worse at night.

 

I find that B12 shots (must be hydroxyB12, not cyanoB12.  I can give you the
wholesalers' item number if you wish), alpha lipoic acid and Metanx help.  I
find that I need weekly B12 shots, ala twice a day and Metanx once a day.
My podiatrist says he's getting good results with Metanx
http://www.metanx.com/, however, I find I need the other two things. Metanx
contains B12 but it doesn't seem to work for me in pill form.  I blame it in
gut damage from the celiac disease.

 

I've had neuropathies since my early 30's (i'm nearly 50). The doc says that
they should not get worse as long as I am Gf. the podiatrist is hopeful that
the Metanx will help fix things.  I find that the B12 shots and ala help
control the pain.

 

Good luck and please let me know what others have to say.

 

I went through a period of about two years of peripheral neuropathy in both
feet and fingers.  If anything might have helped it might have been the
Vitamin B6 I took for several months until I began to have urinary symptoms
that I didn't like.

The neuropathy defied explanation at the time, as I was strictly gluten
free.   I live in NYC and was thoroughly tested by the neurologist who
collaborated with Dr. Peter Green on a study relating Celiac Disease and
peripheral neuropathy.  You might look up that study: It would have been
published in the early 2000's.




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