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Ataxia UK
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New here- Canadian with Gluten Ataxia...

I feel I won the lottery because I stumbled across this site. I have so many questions. I don't know where to start. I thought my neurological problems were due to an accident. But it is gluten ataxia.

Question: If you avoid gluten, how long does it take to get better or are you always sick forever?

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Hi happylilive

A warm welcome to the 'club' from good old UK I hope you get lots of help and information from us all. Unfortunately I can't give you any help on the gluten front but I am sure others will. I have something called CANVAS which is Ataxia with added complications. I don't know how long you have had Ataxia ( or your age!!!).but please feel free to give more details and we are sure to give you. Help and support

Best wishes. Tedjohnson

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I don't think you'll get better as such but should see an improvement in how you feel and that is worth something. I was investigated for gluten ataxia but unfortunately had not eaten gluten for about 6 months before the blood test so that was negative. What I found happened for me was that my dizziness and blurriness eased off noticeably. I used to get to the top of the stairs and not be able to go down and bought a stairlift. Stopping gluten gave me a bit of perception back and I can now kind of manage to shuffle downstairs, not very well but at least I have a bit of function back. Apart from the digestive impact of stopping gluten you may find life just a little bit easier.

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do you have gluten ataxia?

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Dear happylilacs,

I have Machado-Joseph disease which has nothing to do with gluten ataxia, althgough I am also gluten intolerante. Long before the ataxia I was sick and nauseous all the time especially after a meal. I then found out I was gluten intolerant, avoided gluten and felt better almost instantly. I now feel sick only when I accidentally ingest something with gluten. Normally I am very good, but sometimes when out something with gluten or contaminated is presented to me. Also here in Portugal the information on labels are not very good and people do not know much about it. I am now very limited to eating out (I do not trust anything cooked out of my sight) but I do not often feel sick. However whenever I eat something contaminated, almost immediately I feel nauseous, dizzy and less co-ordinated. I am not sure how fast you will get better or if you will recover totally, but I know from experience you will feel much better almost immediately if you avoid gluten totally. Gluten comes in many disguises, so you have to know exactly where it is found. google it, to see all the products where it may be found. We have an association in Portugal that tests products that supposedly are gluten free and will only approve them if they are truly gluten free. You have to eliminate gluten totally from your diet, not just a little bit to see the benefits. Good luck, and I hope soon you will be able to say you no longer have ataxia. I am not sure about your cerebelum but the entestines recover fully within a certain period of eating gluten free.

Best wishes

Isabel

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Ty so much isabel, I am sorry you have this problem too. It seems few people here know about these issues. I am working to get better and to avoid gluten. I seem to react to dairy and soy as well. Lucky me.

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A BIG Welcome to YOU. I aso came across this site by accident so I understand your excitement. You will get lots of support and advice here but to get up to date news on the research going on .....PLEASE join Ataxia .org.uk Doors will automatically open for you. You will find that we are all similar in our goals and we are all here for each other.

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Ty so much

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Ty so much I will join ataxia.org.uk.... I am sure it will be helpful:)

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Hi happylilacs, welcome πŸ™‚ As has been said already, keeping to a strict Gluten Free Diet is essential, as to how long it takes to recover from being 'gluttened' depends on the individual. At home, it's important to use separate utensils, and even a toaster, because there's a very real danger of cross contamination. So eating out can be more of a challenge 😏 Certain medications may contain gluten, it's advisable to ask a Pharmacist, and even shampoo can be contaminated.

I'm 'sensitive' to Gluten, and yeast, when I over indulge on fresh bread I feel very bloated, and suffer from 'brain fog'😬 The link to ataxiauk is ataxia.org.uk also see ataxia.org πŸ™‚xBeryl

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Ty so much

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Hi, please bare in mind it's not just about Gluten... it sneaks in everywhere. Remember BROW... Barley, rye, oats and wheat, this includes gluten free oats and codex wheat starch (essentially safe for coeliacs).

Look at cheap pop (soda) as that often contains barley. Don't eat may contains. Join face book coeliac groups and learn as much as you can.

This will most likely be a life long diet for you otherwise you will start to go downhill

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Ty so much

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No problem x

I'm coeliac and wheat intolerant so if ever you want to make contact please feel free.

My email is kjtibby@aol.com.

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Big welcome and sorry do not know about your ataxia!

Personally my fitness trainer recommended I try a gluten free diet. It was funny because during my no gluten avoidance we discovered my daughter is nearly celiac and since when ever I have gluten now, it gives me tummy ache.

Hopefully your ataxia will improve.

Good luck x

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Ty so much. Best of luck to you and ur daughter. I apologize, I have bad brain fog. I get confused when reading sometimes and I must take a break.

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Sorry for delay...inhad computer issues. So nice to meet you all. I have read all messages ty for giving me your greetings.

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Hi. If you ever get trapped in a bad brain fog try cutting out ALL grains ( and the major alergens like dairy). I thought i was going to have to accept life in a severely incapacitated mental state untill i cut out all grains. You can never be too vigilant against the gluten. Contamination can be everywhere.

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