Hi april,
If your daughter has not been evaluated for gluten sensitivity, please be sure to do so. Up to 40% of those with spinocerebellar ataxia have been found to be gluten sensitive~ with the primary treatment being a gluten free diet. In some cases there is definite improvement, depending upon the severity and duration of the disease process. In other cases, the best hope is to stop the process from further progression.
Quote:
Dietary treatment of gluten ataxia.
Hadjivassiliou M, Davies-Jones GA, Sanders DS, Grünewald RA.
Department of Clinical Neurology, The Royal Hallamshire Hospital, Sheffield, UK. m.hadjivassiliou@sheffield.ac.uk
BACKGROUND: Gluten ataxia is an immune mediated disease, part of the spectrum of gluten sensitivity, and accounts for up to 40% of cases of idiopathic sporadic ataxia. No systematic study of the effect of gluten-free diet on gluten ataxia has ever been undertaken. OBJECTIVE: To study the effect of gluten-free diet on patients presenting with ataxia caused by gluten sensitivity. METHODS: 43 patients with gluten ataxia were studied. All were offered a gluten-free diet and monitored every six months. All patients underwent a battery of tests to assess their ataxia at baseline and after one year on diet. Twenty six patients (treatment group) adhered to the gluten-free diet and had evidence of elimination of antigliadin antibodies by one year. Fourteen patients refused the diet (control group). Three patients had persistently raised antigliadin antibodies despite adherence to the diet and were therefore excluded from the analysis. RESULTS: After one year there was improvement in ataxia reflected in all of the ataxia tests in the treatment group. This was significant when compared with the control group. The diet associated improvement was apparent irrespective of the presence of an enteropathy. CONCLUSIONS: Gluten ataxia responds to a strict gluten-free diet even in the absence of an enteropathy. The diagnosis of gluten ataxia is vital as it is one of the very few treatable causes of sporadic ataxia.
PMID: 12933922
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Much of this research has been done in just the last ten years, so many neurologists are not even aware.
There is a lot of information about diagnostics and the neurological maninfestations of gluten sensitivity in The Gluten File linked below in my signature. They have recently found a new antibody related to gluten ataxia, unfortunately not yet available to the public.
Quote:
RESULTS: Whereas the development of anti-transglutaminase 2 IgA is linked with gastrointestinal disease, an anti-transglutaminase 6 IgG and IgA response is prevalent in gluten ataxia, independent of intestinal involvement. Such antibodies are absent in ataxia of defined genetic origin or in healthy individuals. Inhibition studies showed that in those patients with ataxia and enteropathy, separate antibody populations react with the two different transglutaminase isozymes. Furthermore, postmortem analysis of brain tissue showed cerebellar IgA deposits that contained transglutaminase 6. INTERPRETATION: Antibodies against transglutaminase 6 can serve as a marker in addition to human leukocyte antigen type and detection of anti-gliadin and anti-transglutaminase 2 antibodies to identify a subgroup of patients with gluten sensitivity who may be at risk for development of neurological disease.
Autoantibodies in gluten ataxia recognize a novel neuronal transglutaminase.
PMID: 18825674 Sept 2008
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Dr. Marios Hadjivassiliou, from the UK, has done the bulk of the research in the area of gluten sensitivity and ataxia. Perhaps your doctor could contact him to see whether it is possible to have this new test. I see you are from England... are you aware of Dr. Hadjivassiliou's work?
http://jccglutenfree.googlepages.com/halloffame
And, here is the body of research I have found pertaining to gluten ataxia.
http://jccglutenfree.googlepages.com/glutenataxia
Deficiency of vitamin E and B12 are also associated with ataxia, I think.
My daughter was showing unusual neurological symptoms around age 4 that I believe may have been early stages of ataxia (staggering, leg drag, eyelid dropping, limp body fatigue, slurred speech, incontinence). We stumbled upon this information eight years ago, while researching other health problems within the family. We put her on a gluten free diet even after her testing for celiac disease turned up negative because we had read that gluten sensitivity can affect one neurologically without evidence if celiac disease (without postitive anti-tTG and villous atrophy on intestinal biopsy). She also had gastrointestinal symptoms, but gluten sensitivity can cause neurological disease without any gastrointestinal involvement at all. All of my daughters symptoms resolved. Here is our story.
http://jccglutenfree.googlepages.com/thestory
Cara