I asked to be tested for gluten ataxia the last time I went to the Ataxia Clinic in Oxford but I haven't had any feedback. I stopped gluten some time ago and feel better for it but still have the ataxia.
I don't think gp's know enough about our condition and that is why it is important to go to the specialist clinic.
Hiya Wobblybee, I had the gluten tests and they were negative, yet since I've been dieting and given up bread etc I've found that my digestive system is soooo much better!! I don't get bloated or bunged up anymore and so far I've lost 20lbs
I'm trying as much as possible to avoid gluten, and sugar. Chocolate is my downfall, and I'm addicted to Nutella on toast! I would so like to lose 20lbs! xBeryl
Hi Beryl, I've lost it on Slimfast and Adios. I have all the flavours so I can have a change and get use the chocolate one when I need a fix!! I use the Adios to replace mobility as I can't walk much. Interestingly I cut out all bread and only occasionally have potatoes. I went on a bread binge a few days ago and regained 7lbs!!! Stayed off it again for 2 days and already lost 2lbs......xx
My GP readily admits to knowing very little about Ataxia. I am the only patient he has dealt with who has it and he has been at the practice for 30 years! I am going to the Ataxia Clinic in Oxford in October, so I can be seen by someone who has previous experience of it.
Yes, it's amazing that some doctors have never heard of Gluten Ataxia! Some have never heard of ataxia period.
If it's any consolation, my neurologist, who is an ataxia expert and researcher, does say there is such a thing as Gluten Ataxia, and has many patients with it. I, personally, don't have GA, as I was tested with negative results. My neurologist is open to the idea of my trying a GF diet, as he says if anything, it's good for general health. By the way, I love chocolate too Wobblybee! (yum!) ;o)
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