<<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 * Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *