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Redcat Adler <[log in to unmask]>
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Redcat Adler <[log in to unmask]>
Date:
Tue, 16 Sep 2003 13:52:52 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

WOW thanks to all who responded, it was so helpful. I have no great to
summarize this, and unfortunately am pressed for time...but here is part of
the responses I got, many of you said you were interested in hearing it.
Sorry I do not summarize often so I  may be doing it wrong....
- P.S. a lot of links were given...


I'm on another listserve about sulfur issues, and since I had dizziness
problems, low blood sugar, etc, I tried their advice to use Epsom salts to
increase the magnesium and sulfate levels in my body. And, wow! The
dizziness disappeared within a few short days.

is another website that has had a lot of discussion
: DQ 1-- Take a look...go back through the earlier pages of
> the forum and sift
> through the info.


> http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?
action=topics&f

. I too had the genetic testing done and have 2 copies of HLA DQ1, sub type
6. I'm currently thinking, that if the experts are right, I probably do not
have CD but definitely do have gluten sensitivity. I think though there is
a lot they haven't found out yet. Your IgG comment was interesting. I had
IgE testing only and it was negative for wheat but recently I was reading
about IgG mediated allergies, the delay in reacting, and the symptoms, fit
me to a T.

Yes, most definitely the balance problem and associated neurological
symptoms (called gluten ataxia)might be from gluten sensitivity. The
researcher that wrote the following article has done a lot of study in this
area and his work is available on the internet in several places I believe,
including medline. The way this thing has affected my nervous system is the
very most difficult thing about this disease.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=retrieve&db=pubmed&list_uids=9843103&dopt=Abstract

I too have suffered from balance problems and some vertigo for 19 years.
For all these years I've been diagnosed with chronic fatigue syndrome which
typically has many neurological and cognitive problems associated with it.
But 10 months ago a doctor thought of testing me for celiac disease. So now
I too am wondering if gluten is the issue. I have read that gluten can
cause ataxia which seems to be defined more as a mobility/neurological
issue, but I wonder if it can include balance/vertigo.

When I looked up the links associated with the article, I found over 100
references to gluten and neurological problems, something that is obviously
greatly overlooked in this country

"Ataxia is a symptom, not a specific disease or diagnosis. Ataxia means
clumsiness, or loss of coordination. Ataxia may affect the fingers and
hands, the arms or legs, the body, speech or eye movements. This loss of
coordination may be caused by a number of different medical or neurologic
conditions; for this reason, it is important that a person with ataxia seek
medical attention to determine the underlying cause of the symptom and to
get the appropriate treatment."

http://brain.oupjournals.org/cgi/content/abstract/126/3/685 These
researchers had described a group of patients with gluten sensitivity
presenting with ataxia (gluten ataxia) and suggested that this disease
entity may account for a large number of patients with sporadic idiopathic
ataxia. This study investigated the prevalence of gluten sensitivity and
looked for a possible genetic predisposition to gluten sensitivity amongst
a large group of patients with various causes of ataxia. Patients were
screened for the presence of antigliadin antibodies. A total of 1200
volunteers were screened as normal controls. The difference in prevalence
between the idiopathic sporadic groups (41% of 132; 32 % of 44) and the
other groups was highly significant than in those with other types of
ataxia (14% & 15%,) and the normal controls (12%). Ocular signs were
observed in 84% and dysarthria in 66%. Upper limb ataxia was evident in
75%, lower limb ataxia in 90% and gait ataxia in 100% of patients.
Gastrointestinal symptoms were present in only 13%. MRI revealed atrophy of
the cerebellum in 79% and white matter hyperintensities in 19%. Forty-five
percent of patients had neurophysiological evidence of a sensorimotor
axonal neuropathy. Gluten-sensitive enteropathy was found in 24%. HLA DQ2
was present in 72% of patients. The researchers concluded that gluten
ataxia is therefore the single most common cause of sporadic idiopathic
ataxia. Antigliadin antibody testing is essential at first presentation of
patients with sporadic ataxia.This article mentions HLA DQB1
genes..Unfortunately I know (& have found) nothingabout how genes are
labeled or numbered.Sporadic cerebellar ataxia associated with gluten
sensitivity.Burk K, Bosch S, Muller CA, Melms A, Zuhlke C, Stern M,
Besenthal I, SkalejM, Ruck P, Ferber S, Klockgether T, Dichgans
J.Department of Neurology, University of Tubingen, Germany. buerk@uni-
tuebingen.deA total of 104 patients with sporadic cerebellar ataxia were
tested forantigliadin and antiendomysium antibodies. Twelve individuals
(11.5%) withgluten sensitivity underwent duodenal biopsy and extensive
clinical,electrophysiological, neuropsychological, radiological and
laboratoryinvestigations including human leucocyte antigen (HLA) typing.
Two patientsshowed typical changes of gluten-sensitive enteropathy with
crypthyperplasia and mucosal flattening. In five patients, the
intraepitheliallymphocyte count was elevated. Sporadic ataxia with gluten
sensitivity wasfound to be tightly linked to the HLA DQB1*0201 haplotype
(70%).Neurological symptoms were not related to hypovitaminosis or
inflammatoryCSF changes. The clinical syndrome was dominated by progressive
cerebellarataxia with ataxia of stance and gait (100%), dysarthria (100%)
and limbataxia (97%). Oculomotor abnormalities were gaze-evoked nystagmus
(66.7%),spontaneous nystagmus (33.3%), saccade slowing (25%) and upward
gaze palsy(16.7%). Extracerebellar features also included deep sensory loss
(58.3%),bladder dysfunction (33.3%) and reduced ankle reflexes (33.3%).
Inaccordance with clinical findings, electrophysiological
investigationsrevealed prominent axonal neuropathy with reduced amplitudes
(50%) andabnormal evoked potentials (58.3%). On neuropsychological testing,
patientspresented with moderate verbal memory and executive dysfunction.
Allpatients had evidence of cerebellar atrophy on MRI. We conclude
thatsporadic ataxia may be associated with positive antibodies against
gliadin.Nevertheless, mucosal pathology does not represent an obligatory
conditionof ataxia with gluten sensitivity. The fact that the disease is
stronglyassociated with the same HLA haplotypes found in coeliac disease
not onlydemonstrates coeliac disease and ataxia with gluten sensitivity to
be partof the same disease entity but supports the hypothesis of an
immunologicalpathogenesis of cerebellar degeneration.

The DQ1 gene is common...as the others. Around 30% of the population has
this gene. Interesting that you mention narcolepsy, because I know someone
who has what she believes narcolepsy (and celiac). I'll have to look into
that.

join us at the Gluten Sensitivity forum at www.braintalk.org . We all have
neurological issues...and trust me..I'm finding many potential celiacs in
the various forums there. The one thing I've found in common with
neurological problems after years on the PN forum, epilepsy forum,
tourettes, autism, at Braintalk, is GUT PROBLEMS and NUTRITIONAL
DEFICIENCY.
Here's a link in, although you'd have to register:
http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?
action=topics&number=262&SUBMIT=Go

Be sure anyone having vertigo attacks is tested for B12 deficiency, or just
starts taking mega dose b12 if they don't want the diagnostic hassle. It
may just work. Vertigo (dx'd BPPV) was among my B12 deficiency symptoms,
and many other B12ers have shared this same symptom.
http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000095.html
Life Extensions magazine article on B12:
http://www.lef.org/magazine/mag2000/dec2000_report_b12_1.html
AAFP article on B12 deficiency:
http://www.aafp.org/afp/20030301/979.pdf

the literature on gluten ataxia is by Hadjivassiliou, but how is this for
hope:
http://jnnp.bmjjournals.com/cgi/content/abstract/74/9/1221


The Neurological Manifestations Of Gluten Sensitivity/Celiac Disease
http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000019.html
Ataxia and gluten
http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000018.html
Peripheral Neuropathy and gluten
http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000020.html
Seizures and gluten
http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000017.html

Neuromuscular Disease and gluten
http://jnnp.bmjjournals.com/cgi/content/full/63/6/770
I'm finding many potential celiacs in the various forums there. The one
thing I've found in common with neurological problems after years on the PN
forum, epilepsy forum, tourettes, autism, at Braintalk, is GUT PROBLEMS and
NUTRITIONAL DEFICIENCY.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?
action=topics&number=262&SUBMIT=Go

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