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Hello everyone,
Thank you to everyone who responded to my question about Pheriperal
Neuropathy. There are alot of you out there who know a great deal about
this subject and quite a few of you who are interested in learning more
about it. This sort of nerve damage seems to go with Celiac Disease, B12
deficiency anemia and diabeties...probably with more things than that
but those were the ones mentioned. I am not diabetic but do have
untreated B12 deficiency anemia. I did treat this condition with B12
sublinguals several months ago and drove my B12 level up to above normal
levels but was ordered to stop taking it and my B12 fell back far below
normal levels. I am assuming that once my doctor gets around to treating
me instead of testing me, my symptoms will improve. This summary is long
as I have quoted nearly every letter I received, but for those of you
out there who suffer with this as I do I am sure that there can never be
too much information.
[Last night I had the pleasure of attending a presentation by Dr. Fine,
a Celiac specialist from Dallas, TX. During the question and answer
session after his talk, someone asked if neuropathy could be a result of
CD. His answer was "ABSOLUTLEY". So, it is possble you have nueropathy
as a result of your CD.]
[I have a peripheral neuropathy that began with intermittent and
unexplainable nerve pain many years ago. Then about 5 years ago it
began to affect my legs and feet and within a few months I could barely
walk due to all the excrutiating pins, needles, stabbings and shootings
of the nerves. Muscle fatigue and weakness is also associated with a
neuropathy. I also have it in my arms and hands but not as bad as I
don't walk on them! I have been taking Norpramin (an anti-depressant is
used to control the pain) for 5 years and it does help to keep me
functioning without too much trouble. The pain is usually only
intermittent but I still cannot ride a bike or stand in lines for too long.]
[You need to be tested for deficiency in the B vitamins, especially
B-12. Your doctor should not overlook this. Also determine how much
protein youare getting. Both of these things have been shown to affect
the nerves. Nerves can regenerate although slowly. I just had a nerve
conductive study done last week on my arm for carpel tunnel and tennis
elbow. The doctor told me that my neuropathy could improve from 5-6
years of being on the GF diet.]
[The most likely cause of neuropathy due to celiac disease is Vitamine
B-12 deficiency caused by malabsorption. The treatment is B-12 given by
injection once monthly after the initial replacement therapy which might
involve once daily injections. B-12 is available by mouth, but does no
good obviously if you can't absorb it.]
[My husband experienced this problem with his hands too. He was
diagnosed in April and has been on the diet ever since (about 4 months).
He experienced other symptoms of nerve damage--such as numb elbows--and
still does, but I believe his hands got better quickly. He was told to
take calcium and so has been drinking Ensure.]
[It could be due to a Vitamin B 12 deficiency. This is common with CD.
Sugegst that you ask your doctor to do a blood test to check your
Vitamin B12 levels. Also, take a gf multi-vitamin and mineral
supplement. (The name brand One a Day is gf). There are others as well.
This can become permanent if you don't supplement right away. It may
already be permanent, but it can get worse.
There are lots of other vitamin and mineral that are malabsorbed in CD
that is why I recommended a multi-vitamin and mineral supplement.]
[Yes, I have permanent nerve damage from at least 14 years of
undiagnosed celiac. I am currently on Klonopin. .75mg daily to control
nerve twitching all over my body. The Klonopin works great. Without it
all parts of my body jerk uncontrolably. I have been on this since my
diagnosis 3 1/2 years ago.]
[...Numbness, especially in the hands or feet - See dizziness above.
Another celiac symptom is called peripheral neuropathy (possibly due to
folic acid deficiency). Also abnormal or impaired skin sensation
(paresthesia), including burning, prickling, itching or tingling. Also
the celiac FAQ lists central and peripheral nervous system disease.]
[I have researched this subject extensively. About 5% of celiacs have
neurological complications, most commonly peripheral neuropathy or
ataxia (lack of coordination) in the legs. The most recent thinking is
that it comes from direct immune system attack on the nerves. The GF
diet certainly can't hurt (and if you're celiac you need to be on it
anyway), but it may not help. Some doctors at Columbia University in NY
are experimenting with immunosuppressive drugs with good results.]
[I have suffered terrible with many aspects of Gluten Damage, nerve
problems being just one of the very painful and debilitating features of
this wide and varied condition. I was, at one point, unable to move
off of my bed to even go to the bathroom, I was locked into a rigid
state with so much pain and stiffness! However, nearly three years on
from diagnosis things have improved a great deal for me and I think much
of the nerve damage has improved dramatically. Though I have to say
that I am still not 100% but am a lot better than I was!]
[It does take a lot of time and patience for things to get better, but
providing that you stay 100% gluten free I am sure you will also get
better in time. We are all very different and have had varying degrees
of damage done to our systems by the gluten toxins, so no one can be
absolute with when things will improve ~ it may take weeks, months or a
couple of years ~ but providing you stick to the GF diet you will improve.]
[I have both Diabetes and Celiac disease and suffer from neurophathy in
my feet. I have been told that this comes from my Diabetes. Since I
have only known about the Celiac problem since last November, I am sure
that is the case.]
[Unfortunately, I have been told that once you have neuropathy you have
it the rest of your life. In the case of Diabetes, if you keep your
blood sugar readings at a safe level this slows down the neuropathy
process but it never goes away.]
[Yes, I have suffered MUCH neuropathy. My neurologist put me on Vitamin
E which he says is scientifically proven to help in celiac patients. And
it has, at least at first, the lingering symptoms seem to be slow in
going.]
[I had the same problem. I found a neurologist who was very familiar
with CD & DH. He did some form of electro impulse testing. He stated
that the neuropathy problem with walking and tingling in the hands is
common for individuals with CD and DH. His recommendation, along with
the diet, was high doses of vitamins E, C, A, and a normal amount of B6.
He recommended several shots of B12. B6 in most of the health
literature that I have read is used to treat numbness in the hands and feet.]
[You should consider using Nikken Magnetic and far infrared products to
help stop the progression and possibly even reverse the neuropathy.
These products have had remarkable results for many people and I can put
you in touch with some of them if you are interested.
I became a distributor because they made such a difference for me
personally. Check out the following web sites:
www.nikken.com/uk/mag1.html
www.5pillars.com ]
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Peripheral Neuropathy
...
Nutritional deficiency and metabolic disorders may result in
polyneuropathy. Deficiency of B vitamins is often the cause (eg, in
alcoholism, beriberi, pernicious anemia, isoniazid-induced pyridoxine
deficiency, *malabsorption syndromes*, and hyperemesis gravidarum).
Polyneuropathy also occurs in hypothyroidism, porphyria, sarcoidosis,
amyloidosis, and uremia. Diabetes mellitus causes several forms of
neuropathy; sensorimotor distal polyneuropathy (most common), multiple
mononeuropathy, and focal mononeuropathy (eg, of oculomotor or abducens
cranial nerves).
...
Polyneuropathy is relatively symmetric; sensory, motor, and vasomotor
fibers often are involved simultaneously. (An acute, rapidly progressive
form, the Guillain-Barre syndrome, and hereditary neuropathies are
discussed separately below.) The most common form of polyneuropathy,
seen with metabolic disease (eg, diabetes mellitus, renal failure,
*malnutrition*), develops slowly, often over months or years; it
frequently begins with sensory abnormalities in the lower extremities.
Abnormalities are often more severe distally than proximally. Peripheral
tingling, numbness, burning pain, or deficiencies in joint
proprioception and vibratory sensation often are prominent. Pain is
often worse at night and may be aggravated by touching the affected area
or by temperature changes.
In severe cases, objective signs of sensory loss, typically with
stocking-and-glove distribution, can be shown. The Achilles and other
deep tendon reflexes are diminished or absent. Painless ulcers on the
digits or Charcot's joints may be seen when sensory loss is profound.
Sensory or proprioceptive deficits may lead to gait abnormalities. Motor
involvement results in distal muscle weakness and atrophy.
The autonomic nervous system may be additionally or selectively
involved, leading to nocturnal diarrhea, bladder and bowel incontinence,
impotence, or postural hypotension. Vasomotor symptoms are variable. The
skin may be paler and drier than normal or there may be excess sweating
and/or dusky discoloration. Trophic changes are common in severe and
prolonged cases; they consist of smooth, shiny skin, pitted or ridged
nails, and osteoporosis.
Uncommonly, an exclusively sensory polyneuropathy is seen, which begins
with peripheral pains and paresthesias and progresses centrally to a
loss of all forms of sensation. This occurs as a remote effect of
carcinoma, especially bronchogenic, after megadose intoxication with
pyridoxine (B6), in amyloidosis, hypothyroidism, myeloma, and uremia.
...
=======================================================================
In the Celiac Sprue Association/USA flyer on celiac disease (Box 31700,
Omaha, NE 68131 402-558-0600) among the symptoms it lists peripheral
neuropathy as numbness and tingling in fingers and toes.
=======================================================================
A Medline abstract:
TI- [Celiac disease in adults revealed by sensory-motor neuropathy]
TI- <Original> Maladie coeliaque de l'adulte revelee par une neuropathie
sensitivo-motrice.
AU- Viader F; Chapon F; Dao T; Rivrain Y; Lechevalier B
CS- Service de Neurologie, CHRU de Caen.
JN- Presse Med; 24 (4) p222-4
PY- Jan 28 1995
AB- Central or peripheral nervous system complications are occasionally
observed in adult patients with celiac disease. Several mechanisms have
been proposed including vitamin deficiency, vascular inflammation and a
direct effect of gluten intolerance. Typical nerve fiber damage due to
demyelinization has been suggested. We observed a 65-year old woman
with a right peroneal nerve palsy superimposed on a diffuse peripheral
neuropathy who was found to have folic acid deficiency which in turn
led to the diagnosis of adult celiac disease. Electrophysiological and
histological studies demonstrated a predominantly demyelinating
peripheral neuropathy which responded first to parenteral folic acid
supplementation and second to a gluten-free diet. The mechanisms of
peripheral nerve damage in adult celiac disease are briefly discussed
and the possible role of folic acid deficiency is emphasized.
=======================================================================
In this study:
Hadjivassilou et. al. "Does cryptic gluten sensitivity play a part in
neurological illness?" _The Lancet_ 1996; 347: 369-371.
They found that 57 percent of those with neurological problems of
unknown cause also had antibodies to gliadin, which is a component of
gluten. Sixteen percent of them had coeliac disease, a much higher level
than normally found. Most of the patients with the anti-gliadin
antibodies did not have other symptoms of coeliac disease such as poor
absorption of vitamins.
In this study:
Hadjivassilou et. al. "Clinical, radiological, neurophysiological, and
neuropathological characteristics of gluten ataxia" _The Lancet_ 1998;
352:1582-1585.
The abstract summary reads, "Gluten sensitivity is an important cause of
apparently idiopathic ataxia and may be progressive. The ataxia is a
result of immunological damage to the cerebellum, to the posterior
columns of the spinal cord, and to peripheral nerves. We (the authors)
propose the term gluten ataxia to describe this disorder."
Patients with ataxia (a neuromuscular disorder) who attended a neurology
clinic were screened for celiac disease (biopsy and HLA). The authors
identified 28 patients with gluten sensitivity and ataxia with no other
predisposing cause. The neurological symptoms preceded the diagnosis of
celiac disease.
In this article:
Cooke WT, Neurologic manifestations of malabsorption. In Handbook of
clinical neurology, volume 28 (metabolic deficiency diseases of the
nervous system, part II), Amsterdam; North Holland Publishing Company,
1976; 225-41.
They discuss the many neurological manifestations that are associated
with coeliac disease, including ataxia, *peripheral neuropathy*,
myelopathy, myopathy, and dementia.
In this article:
"Neurological Manifestations of Adult Coeliac Disease", David
Beversdorf, Peter Moses, Alexander Reeves, and John Dunn, _The Lancet_,
Feb. 17, 1996, v347.
They discuss the neurological manifestations of adult celiac disease
which include cerebellar ataxia, *sensory neuropathy*, myopathy, hyporeflexis,
and seizures. These symptoms resemble those of Vitamin E deficiency.
Patients with abetalipoproteinaenemia, who lack the lipoproteins
necessary to carry fat-soluble vitamins, have similar symptoms. These
patients respond to water-miscible Vitamin E supplementation.
And:
Drs. Cooke & Holmes in _Coeliac Disease_ 1984; Churchill Livingstone, NY
say that 10% of celiacs have neuropathic symptoms. Many appear to be
associated with demyelination. Fineli et. al. echo that figure in "Adult
celiac disease presenting as cerebellar syndrome" _Neurology_ 1980; 30:
245-249.
Cooke & Holmes come right out and express some of their frustration with
neurologists for ignoring the potiential for neuropathic celiac.
=======================================================================
[I had the neuropathy in my hands and arms for quite a while. It did go
away on the gf diet, although it was about 4-6 months before it stopped.
It went away initially, but did reoccur periodically when my stress
levels were high. I have been gf for 16 months now, and no longer have
any occurrences of it.]
[if you have damage that was obvious to the doc before he sent off the
samples for evaluation, it is possible that you have not been absorbing
nutrients. This can lead to nerve damage. Yes, it should improve on the
GF diet, if that's what's causing it. Once your gut heals and you begin
to absorb vitamins and minerals it will make a difference. You might
start taking a one a day vit and some B vitamins (especially B12) now to
help with this. If you take B vits, be sure you take the same amount of
each. Especially be careful not to take less B6 than you do of any of
the others.]
[Yes, neuropathy can be one of the symptoms of CD.]
[My daughter (23 years old) has neuropathy...she has had diabetes for 22
years and celiac for 3 years. Her neuropathy is in lower limbs and
stomache...Dr's said there was nothing we could do..
Well I searched and searched....then I found Lipoic acid...a major anti-
oxident that has virtually no neg side effects and can prevent/slow or
possibly REVERSE nerve damage (neuropathy) and "may" help prevent
calcinosis..Well within 1 month of being on about 200mg...my daughter
was once again able to digest her food......I can only assume that the
Lopoic acid has indeed helped heal some of her neuropathy...Do some
reseach on Lipoic acid and see what you think...it may be worth a shot!]
[Wish I could be more encouraging about this, but I also have this and
it has not gotten better on gf diet. It seems once the damage is done
to the nerves, there isn't much that can be done. I have been on a gf
diet for 5 years with no improvement. I get some relief with neurotin,
a drug. I use it mostly at night in what sounds like a very high dose
but that isn't unusual. (400mg AM and 900mg PM) I also take B12 to
help keep from getting more damage.]
[I have Neuropathy actually it I called Peripheral Neuropathy. My Doctor
is treating it with increased shots of Vitamin B12. The medical book
says it could be caused nerve damage. I'm going to let the Doctor try
the B12 shots for a while. If that doesn't work I will press for a
Neurology Doctor. I am convinced that a GF diet is not going to help
this situation. I have been on one for 14 years, and this problem just
surfaced. One other tip, put Peripheral Neuropathy on a search engine,
and you will get a lot of information.]
[I noticed since I went on the gf diet, my hand writing has improved.
It was getting pretty bad there for a while and I wasn't sure why. My
hands would shake some when I wrote. It's much better now, like it used
to be, even my husband has noticed it.]
[Neuropathies are usually a sign of Vit B12 and folic acid deficiencies,
diabetes or hypoglycemia (low blood sugar). It can be cured to a large
degree by adding B12 and folic acid either by injection or by foods
(liver, green leafy vegetables, brewer's yeast, asparagus, broccoli,
cheese, mushrooms, oranges, and legumes (beans, peanuts). I 've read
even brown rice will help quite a bit. ( I an eating now one serving of
brown rice per day and am much more balanced and sleep better.) Coffee
will break down the B12, not the coffein but the acid in the coffee. If
you have problems you may want to stay away for a while from coffee. My
neuropathies went away with B12 and Folic acid injections. There is a
complex interaction between the Vit B complex (B1,B3,B5,B6 and B12) and
folic acid. Folic acid is needed to break down the Vit B's. therefore a
lack in folic acid has the same results as Vit B complex deficiencies.
B12 lasts a long time in the body in normal people. We have poor
absorption and often don't have enough of it. it can cause also
depression, anemia, fatique, weight loss, diarrhea, poor memory,
hostility, paranoia, insomnia with vivid dreams, irritability,
headache... do we all know that side of it...???]
[My husband has permanent nerve damage in his legs from Celiac disease.
Because your villi are flattened due to auto-immune attack in Celiac
disease, you are not absorbing adequate levels of vitamin B-12. Vitamin
B-12 deficiencies can lead to permanent nerve damage IF the vitamin B-12
deficiency goes on long enough (I don't know exactly how long). My
husband was only 3 when he was diagnosed (too late) with Celiac
disease. Today, he walks with a limp because of this nerve damage.]
[This is not to say that your peripheral neuropathy is necessarily
related to your Celiac disease (MANY diseases can cause neuropathies) or
that yours is permanent. A GF diet will allow your villi to re-grow and
taking multi-vitamin supplements may help, if your nerves have not been
"starved" too long.]
Been on the GF diet since 96. MUCH IMPROVEMENT. I have had problems with
neuritis in my face (once), top half of my skull (once) and in my foot
(twice). Had a severe "attack" in my foot once while at work (came on
suddenly) and it hurt so bad that I had to hop out to my car and go home.
I continued to have much difficulty walking with constant pain. Doctor
said I had fascietis (mispelled). I could walk but with much pain, had to
walk slower than everyone else, felt like an old person. Couple of times,
had to just stop walking and limp back to chair, bed, or car. These
problems were daily, some days worse than others, but never going
completed away. These symptoms lasted for a few months, then finally just
went away. The face attack only lasted a couple of weeks. Have not had
any recurrences since staying on the diet. My doctor is not knowledgeable
about celiac disease. After much reading about it and listening to
others, I believe these were attacks of neuritis caused by malabsorption.
No problems in the last 3 years (on the diet).]
[When I initially went gluten free my symptoms improved but never
totally went away. When I got off the diet the problems gradually
returned. I have been back on the diet now for about 5-6 years. The
symptoms improved only slightly initially and then continued to worsen.
I now have a diagnosis of CIDP (chronic inflammatory demyelinating
polyneuropathy). In my opinion all of this is a result of CD and the
damage I did by being off the diet for so long. I have recently begun
intravenous immunoglobulin treatments for the neurological problems.
The doctor has reported some improvement in my reflexes in the lower
extremities. ]
[Check under polyneuropathy and damage due to malabsorption
syndromes.Yes, nerve damage from B vitamin deficiencies is permanent and
it can be quite extensive. You may want to consult a neurologist who is
up on nutritional causes of polyneuropathy. I am sorry to say they can
be difficult to find. I surfed the John Hopkins neuro database to find
information on polyneuropathy and progressive motor nerve damage. It
was awhile ago but you might try doing some site searches there.]
"Yes, such damage is known with celiac disease, and it can be difficult
to reverse because nerves heal very slowly if at all. It depends what
has occurred in your case. You should also keep multiple sclerosis in
mind, as such symptoms are typical in that disease. Celiac and MS are
variations on the same syndrome, as far as I and others are concerned.
Thankfully MS is most often caused (don't expect your doctor to agree)
by food allergies too. Going gluten and dairy free would certainly be
the best first step."
"A helpful book if you can find it (your local libraries might have it,
but it's out of print) is called: 'MS Something Can Be Done and You Can
Do It'. It is by Robert W. Soll, M.D., PhD., and Penelope B. Grenoble,
PhD. It is published by Contemporary Books, Inc., Chicago, 1984. ISBN 0-
8092-5469-7. It connects MS to diet and shows ways that might help in
identifying which foods you are allergic to."
"I almost hate to answer your question on whether or not the nerve damage
will improve. I have been suffering from neuropathy for several years and
from undiagnosed cd for many years. Finally, it was diagnosed and I have
gainedb back 15 of the 36 pounds I lost. Unfortunately, I have not had
relief from extreme numbness and pain. The neurologist who diagnosed me
prescribed a medication that is supposed to quiet the nerves. It does
relieve some pain, but the side effects included sleepiness and lack of
alertness. I chose not to be medicated and regretfully I must wear tennis
shoes most of the time because it makes it easier to walk. I have
adjusted as well as I can and hope you will too. It does not get better.
Some advise I can give you is do as much exercise as possible. It will
definitely get you down, but you must not be sedentary. I spent too much
time telling myself that I cannot do this or that. You can swim and use a
stationary bike or anything that will be easy on your feet. You will feel
better if you stay active."
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