<<Disclaimer: Verify this information before applying it to your situation.>>

Thank you to everyone who responded to my inquires regarding Neuropathy and Tremors.  A copy of your responses are below:


I have this problem and so does my sister who doesn't have Celiac.  Here is a website you can learn much from. http://www.essentialtremor.org/ The tremors that my sister and I have are head movement and in the hands. It's
 difficult to write legibly but it doesn't occur all the time.  The tremors in both hands and head are sporadic.  It seems to run in families. My father had it as well.  Check the organization website. Good luck!



I was diagnosed with Peripheral Neuropathy in 1999.  My neurologist gave me some sample brain pills.  I have not needed to take the pill. My naturopath prescribed B-12 plus B-12 complex combined with folic acid by muscle
injection.  He prescribed weekly shots.  I give myself a shot every two weeks, but if I miss I experience unusual tingle in toes and dull pain in my feet.



Yes, I have this involuntary head motion that was observed by my neurologist when he diagnosed me with Peripheral Neuropathy.  He said there was nothing I could do about it except to consciously try to control it.



I get it if I have a tiny bit of gluten from an unknown source



I, too, suffer from this - it always drove me crazy til I found out just what it was from.  I am also pretty self concious about it, but what can you do?  (It looks like I am always shaking my head no, and at times seems
worse with stress.)





I was dx'd with peripheral neuropathy at the same time I was dx'd withpernicious anemia - something that seems to go along with celiac.  I get a b-12 shot every month, and will for life.  It has somewhat improved, but the
y say that some nerve damage may be for life.  Hope this helped.



Yes I have perpherial neuropathy in my feet, very bad.  My dr. prescribes Neurotin to help it but it will not cure or completely do away with the symptoms.  I take very large doses of the medication.  I started out with o
nly 300 mg. at bedtime.  I found I needed to take this about 6 P.M. for it to take effect by bedtime.  It was later increased to 600 mgs., then to an A.M. dose also.  This has been increased until now I am taking 800 mgs.
 In A.M. and 1,400 mgs. at 6 P.M.   This may sound like a very large amount but my dr. assures me that it can go even higher without ill effects.  It makes my life bearable, but as I said before, it does not cure anything
 and this neuropathy gets worse as time goes on.   At least in my case it has. I was diagnosed with this (hands and feet).  No treatment was advised. Time on GF diet has lead to some improvement.

I haven't had PN.  But, I used to work at a holistic medical clinic that offered a treatment that cures PN in diabetic patients.  The treatment is a series of six mineral/vitamin intravenous infusions.  The patients I kne
w who have had it done say it works like a charm.  I had the same series done for my various deficiencies due to celiac, & I found them very helpful.  To find a holistic physician in your area see: http://www.acam.org/



I had pretty severe peripheral neuropathy that my neurologist assumed was gluten enteropathy. Turned out it was positional...that is, when the physical therapist turned my head and neck a certain way, the pain disappeared
. Now I self-correct with posture and exercise. The intense burning in my hands and feet are gone.  Do a Google on the McKenzie method of back self-care, see if it helps.



im 50 and celiac and if i am low on energy from messing up and yeah it does happen to even careful normal celiacs i get what i call heaD WOBBLES it goes away as i eat right sometimes months between incidents but I think n
ormal   but what do I know  lol

I have both CD and Peripheral Neuropathy.  CD was diagnosed 22 years ago and Peripheral Neuropathy was diagnosed in my arm and hand as the result of a serious car accident 4 years ago.  So they are not related.  The docto
r is aware of my CD however he said it is NOT related at all.

I have sensory peripheral neuropathy in both feet and in my fingers.  The feet are quite painful - round the clock active sensation that wakes me up at night and makes it feel as if I have rocks in my shoes.  As for the f
ingers, since I am a professional pianist the shock was unbearable when it first hit me in 2000.  But my brain seems to have adjusted, and now I play as if what I touch is in my inner hearing, not the piano keys. Actually
 it has improved my playing, oddly enough. I am in the midst of thorough testing to rule out other possible auto-immune causes for the condition, but so far no luck.  I have told the MD (who collaborated with Dr. Peter Gr
een of the Columbia Celiac Center in a paper on Neuropathy and Celiac links - you can get copies of the paper from the Center - easily findable on-line) that most of my auto-immune conditions do not register on tests, inc
luding my celiac disease and my thyroid condition.  He is willing to go along with the idea that test results are
 not foolproof.  Tomorrow I go see my physiatrist (rehab and physical therapy specialist) who knows me well and we will try to find some way of attacking the problem that will give relief.  I do take an anti-depressant th
at initially did relieve the no-sleep condition, but it doesn't seem to work anymore.



I have C.D. and I also have Essential Tremors.I was diagonized with the tremors about 4 years before I found out I had C.D. The Dr. put me on Inderal. I do not or have ever had high blood pressure. He said that the Indera
l would help control the tremors. It does help.  I wish you best of luck with the C.D. and E. T's.



I have experienced tremors in my hands and legs They started at the age of 3 but I never had a diagnosis of what caused it. I went gf at the age of 49 and within a few months my tremors were significantly reduced. I would
 be interested in your other responses.



Peripheral neuropathy is a VERY common symptom of CD.  As a Registered Dietitian, in addition to the GF diet, I also recommend supplementation with a B complex,  and vit. E - on top of a general mutivit/mineral. Other tha
n that, there are some medications and topical treatments that may help a little.  MD's familiar with diabetes often prescribe these. Please note, that depending on how long you have had the undiagnosed CD and how long yo
u have had the peripheral neuropathy, that it might take long time to heal, and if it has been a long time, that you might have permanent nerve damage.  Good luck



I am dianosed CD. My sister is not. She has beem having tremors and head nods for about a year. She says that she has been tested for CD with negative results. She has since been diagnosed with Parkinson's. I have a great
 mistrust of doctors and am really unsure of these results, as they were not conclusive. Could you keep me posted as to your situatution?  A few months ago there was a posting about neuropathy. It should be in

The archives.



Please explain perpherial Neuropathy.. I do have tremors in my hands and fingers.  I have been gluten-free for almost 1 year. I would like to know if anyone else has hand/finger tremors and if so, has their doc diagnosed
the cause?



Yes.  Vitamin B supplemetation.  It works.



I have numbness in my feet that at times goes half way up my calfs.  The level of numbness is always the same in both legs.  I have been tested for this, but the neurologist can not find anything wrong.  When I walk alot
it gets worse. I talk to Dr. Fascano (spell?) from the University of Maryland about this, he did say it was Celiac that was causing it. He told me that it should improve/go away staying on the GF diet.  I need to make sur
e that I do not let any gluten in my diet.  It has gotten better but is still in varing degrees with each day.

I had short fiber peripheral neuropathy for years before I was diagnosed with celiac disease. It made my skin feel like it was burned -extremely sensitive to light touch, for intermittent periods.  Totally went away, fair
ly quickly after I went GF. No other treatments except taking vitamin supplements where I had low levels.



Yes I have been diagnosed with Peripheral Neuropathy in my feet and I am a diagnosed Celiac. The Doctors have given me no hope of ever being cured. I am at the present time taking acupuncture treatments with little positi
ve results.



My peripheral neuropathy was diagnosed long before the CD which apparently is common.  I was initially given low dose immipramine (sp?) for the pain by a neurologist, which was stopped when the pain cleared up.  This was
1988-1990.  I don't know which meds are being given now. I still have markedly decreased sensation in the front of my calves and feet. I developed slightly more sensation after going gf, but I don't think it ever returns
to normal.



The pain disappeared when I went on a low oxalate diet.  Untreated celiacs (eating gluten) absorb excessive amounts of oxalate from the diet.  This is associated with fat malabsorption.  As the fat malabsorption decreases
 so does the oxalate absorption.  Oxalate is a very powerful acid.  I found that it aggravated all of my neurological symptoms.  (I also developed a balance problem--cerebellar--and other neurological symptoms during the
same time period that I developed the peripheral neuropathy.)  The low oxalate diet plus calcium and magnesium caused all of the pain in my legs to disappear.  When I ate high oxalate foods as a test, at the suggestion of
 my neurologist, the pain returned within 24 to 36 hours.  When I was gf for several months, I found I could eat some high oxalate foods without a return of any of the neurological symptoms.  I assume this is because I st
opped absorbing excessive amounts of oxalate.  Whenever I have a gluten accident, some of the oxalate symptoms
 return (but usually not the leg pain which seems to require a higher and more prolonged exposure to be triggered).  I then have to go on a low oxalate diet for awhile. I hope this helps.



I have it.  I was treated with B-12



I REVERSED my neuropathy by using the homeopathic remedy LYCOPODIUM 2 PILLS 4X A DAY



Best to check for Parkinson's, if you haven't.



My father has head bobbing tremors and some problems withhis mouth/tongue/swallowing as well.  He is responding well to Parkinon's meds (Sinomet) but lots of tests/brain imaging have concluded that he does not seem to act
ually have Parkinsons.  I have celiac- as fas as I know my father does not (he has never been tested) but I would be VERY interested to know if you are aware of any link between celiac and this type of symptom.  I will be
 looking forward to your summary, and please send me anything you have int he way of articles/medical info, etc...

I experience Essential Tremors.  My head & now it has progressed to my left & right hands.  I have had these tremors for about ten years now.
Concerning CD I do have the Celiac Gene, my blood work was positive & negative.  I have not had the biopsy done as yet.  My gastro doctor is not happy with me. I don't feel I have Celiac because I just don't get sick like
 many people do.  I do have IBS.
Looking forward to your summary.  I am 65 years old.
Please investigate all possibilities of a diagnosis.  There is one member of a family (who has 2 celiacs, mom & teenage son) who was diagnosed originally with Essential Tremors, then Parkinson's.  He even had a brain oper
ation to try to stop the tremors.  It did not work completely.  Then a doctor found that all his blood tests came back with high levels of copper.  This is Wilson's Disease.  He had treatment to eliminate all the copper i
n his body, and now he is stable, but he still has some residual paralysis.  He has been through the mill and talked with many doctors.  All along the blood tests showed high copper levels, but nobody noticed.  Please rec
heck all your test results.


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