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Ataxia UK
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Dietary Change Worth it?

Hi All

I have been very recently diagnosed with Ataxia SPG7

I have been wondering if changing my diet would help as i don't deal with tablets well

You all had this asked before but need to try and get my head around this

Thank you in advance

15 Replies
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welcome. could you be more specific on intended diet changes? has your specialist recommended any?

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No not seeing him until February next year. Feel i have been left to work things out for myself x

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Hi, I don't know if this will help or indeed if it will help me but I have gone wheat and dairy free I also eat plenty of fish (salmon, sardines) flaxseed, walnuts are supposed to keep the brain younger.

Good luck

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I was told by a professor at the specialist Sheffield ataxia clinic that no one should change any dietary intake before been tested on everything as Gluten ataxia is routinely tested for on the first appointment at their clinics, but as you’ve already got an actual diagnosis I’m not sure. If it’s because of choking issues then perhaps just try softer food & chew a lot more before swallowing & mention this to whoever you’re seeing in February & ask to be referred to a member of the salts team ( speech & language therapist ) who can help & advise on any issues. But as for food I’d carry on eating as normal until you go.

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Thank you. I'm trying to get as much information so i can ask questions as i am very lost at the moment x

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Nobody in the medical community has ever advised me to change my diet but some feel it helps a lot. I tested negative for gluten intolerance now certain New Age foodies are saying the test is not the ultimate arbiter by aa long-shot. Obviously, eating healthy or just eliminating milk, sugar and wheat is great but its not a cure.. No one seems to have said that....xxN

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Thank you. Not sure what to do thought i ask people who deal with this on a daily basis. I'm trying to get my head around it x

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I am also confused...I think you have to be very strict with new diet and start early in the game xxxxN

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Had the same diagnosis 12months ago, just eat as much fresh veg as I can have stopped eating white bread and that’s all. More importantly get to a gym and do plenty of stretching exercises.

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Hi pineapple, I’m of the belief that if we wait for things to be recommended by the doctor because it’s been scientifically proven then expect a long wait ! I don’t have gluten ataxia but have found I am a lot more balanced and less dizzy for not having any gluten at all. I’ve also spent a lot of time looking up how people have recovered from MS ( as there was very little about recovering from ataxia) and now follow a raw vegan diet, on another forum there has been great improvement for someone doing intermittent fasting and I now also do this ( it’s early days for me but is definitely helping mentally and energy wise. ). Also quite a few people have posted about following Anthony Williams diet ( medical medium) . I would suggest you research AW diet. Raw food healing MS and intermittent fasting and decide if you want to try any of them. Also click on any post by sunvox on this forum as he has lots of advice and keeps us updated with anything new ( although a lot will involve taking supplements which may be hard for you

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Hi Happyfacexx, I have been diagnosed with SCA7 and am trying to improve my diet. Going to try eat raw vegan. What kind of things to you eat for lunch? Thanks :)

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Hi that’s great, have you been looking up on the internet how it’s helped people, I belong to a Facebook group called raw food wild riot, it’s run by Deborah who couldn’t even get herself out of bed and is now fully healthy and very active, just from eating a raw food diet, you could join it to. It takes a lot of willpower but there’s quite a few people who have completely healed themselves with raw food.

I eat lots of apples and bananas . I buy raw cereal from Ocado called Raw gorilla. For lunch I just have salad with organic leaves, tomatoes , from raw slaw from Ocado .nuts seeds, sprouted chickpeas and lentils lots of majoul dates. Sometimes raw crackers and raw bars. I do have hummus which is not raw and occasional some cooked veg. Maybe broccoli. I do have some drinks with hot nondairy milk (which are obviously not raw) it gets much easier after the first week or two. Good luck 😉

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Thanks so much, this is so helpful. I'll look the group up on FB.

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Ataxia uk have info on diet ataxia.org.uk/News/symptoma... might be helpful. Husband has cut out preservatives nitrates and gone organic which seems to have helped a bit.

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I was diagnosed with ataxia 7 years ago and tested negative for gluten ataxia but friend had just read book called 'wheat brain' saying basically anything neurological was affected by gluten so I cut it out about 6 years ago and it made a huge difference so worth a try (took 3-4 weeks) I think as has been said don't wait for advice from specialist do your own research and ask us on this forum - exercise very regularly definitely helps with muscle memory - good luck - and I spent years in denial expecting to wake up one morning and be ok so don't give yourself hard time trying to get your head round it! Try and stay as positive as you can most of the time and concentrate on what you can still do xxx

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