Hi

[vizzio]

Hi everyone, I hope I can learn more about gluten ataxia here. I am a bit confused because I don't have balance problems, its more getting my legs to move, constant pain and weakness in all my limbs. The depression is such a way of life now that I just accept it. I look forward to any replies.

[wobblybee]

HI Vizzio!

There are lots of people on here who'll be able to offer advice about

coping with gluten ataxia, you needn't feel alone with this.

Are you seeing a Neurologist? xBeryl

[vizzio in reply to wobblybee]

Thanks Beryl, yes I see Dr Haj at Sheffield, he's brill. I'm not 100% sure of the gluten ataxia as my gp says its neurological manifestations of coeliac disease but I saw Diane Friend the ataxia nurse at Sheffield and she said gluten ataxia and advised contacting ataxia uk, that's how I came to be here. I feel very isolated as the nearest group for ataxia is Boston and with no transport its impossible to get anywhere. Grantham is a bit of a backwater. xVera

[wobblybee in reply to vizzio]

Hi Vera, Well most people would say you're in the very best hands re Prof Marios at Sheffield. Once your post is read I wouldn't be surprised if you're spoilt for choice with advice on gluten ataxia. I know how isolating it can feel having any ataxia, the reason for mine is unknown, it took me a long time to get my head around it. I'm in Newcastle upon Tyne, a the moment my only contact with others having this condition is on the ataxia sites. Just being able to do this has changed my life, it gives a feeling of normality knowing others experience the same symptoms and have learned how to cope. Contact the group nearest to you, I'm positive they'll do all they can to help xB.

[Hidden in reply to vizzio]

Hi Vissio! Just to say i have gluten ataxia so if you want to chat, drop me a line. Its a complex thing to get your head around, so we try and support each other. You're not alone here!

[vizzio in reply to Hidden]

Hi, yes it would be good to chat, I feel very confused because I don't have balance probs as such, but I've had times in the past when I've felt like people kept bumping into me when I was still able to walk around. I think because it's been going on for yrs I just compensate for it the same as I do with the loss of feeling in fingers and toes, you're just extra careful.

No-one has given me a definite Gluten Ataxia diagnosis in words, Dr Hadj just sent me to have a chat with Diane Friend the ataxia nurse at Sheffield and she was the one who said it. My GP just says it's Neurological manifestations of Coeliac and gives the impression it's temporary but 3yrs on and I cant walk very far and use a mobility scooter to get out but it certainly limits which shops you can go in and keeps me stuck in town as public transport doesn't cater for my mode of transport. Sorry this is a bit moany, look forward to hearing fro you, Vera

[tedjohnson]

Hi I think the main problem for all of us is we all seem to have different symptoms What sight problems do you have? Mine

Are slow focusing and problems when I turn quickly. I also have a musie head all the time and tinnitus almost all the time

I can still walk with crutches but have to be careful getting round the house. Could age come into it !!!? 74

[Thurgolady]

hi Vizzio - you are fortunate to see Prof Marios as Beryl says, he is a world leader in this condition - so take your advice from him and Diane, its unlikely your GP knows much about this! though he may be right that its neuro manifestations of coeliac disease - much the same as sayint its gluten ataxia I think! As (the very lovely) Beryl says there are lots of us around with GA so you neednt be alone. Its a strange thing but we with ataxia do bond wiith one another quite quickly in my experience - because of our rare and shared conditions!!

It seems with GA that everyone has different symptoms and none of us are the same! I have been gluten free for 3 years and the positive news is that I am continuing to improve. Sorry to hear you're depressed but Im sure this will improve a lot - it can be for a number of reasons not least of which is being physically ill coping with a major life change such as going gluten free, as well as potential vitamin and mineral deficiencies caused by the GA.

Google Prof Haj and read all you can about his work on gluten ataxia so that you get a better understanding and ask questions here.

How long have you been diagnosed and how are you coping with the gluten free diet? Do you drive?

Gill

[vizzio]

Hi everyone, thanks for your replies. I've been diagnosed about 2yrs. My sight is more affected by blurriness when I've been on computer or reading and night vision is not good. The depression I've lived with since the age of 15. I've got my driving licence but on ESA so cant afford a car. Been through the ATOS thing went to appeal and won but just being changed over to income based ESA so another drop in income. Had assessment for PIP this week so just got to await their decision. The last few years I haven't eaten very well because of the cost of gf food, made the decision to pay for a roof over my head and all the bills that go with that. Then the bedroom tax came in and my council have no-where for me to move to, they put me here in the first place. Sorry this has turned into a bit of a moan. I have struggled to accept that I cant do what I used to, I used to walk loads and help my daughter with her ASD son, he's very special and I was with him everyday for the first 3yrs, he's now 6 and its hard trying to explain why Grandma cant do things anymore. On the bright side I've found and joined here which is a big step for me, so a really big thankyou for making me welcome. xVera

[february]

Dear Vissio, I live in the States and things are different here. I don't have Gluten Ataxia, mine is Sporadic Cerebellar Ataxia (non-hereditary/unknown cause), so I can't advice you about that. I just wanted to welcome you to this site, as you're not alone in your journey! I've heard Prof H at Sheffield is brilliant and an expert in this field, so you're in great hands! I'm a grandma also (59 years young) so I know what you're going through, physically. But I've decided the best thing I can give my grandchildren is love, as I have plenty of that, in spite of ataxia! No worries if you moan, as this is a wonderful place to do that! We're here for you..., ;o)

[vizzio in reply to february]

Thanks February.

[wobblybee]

Hi Vera!

How's it going today?

Yesterday I cooked till I dropped, almost anyway! I only actually made

2 things but because if takes me forever and a day just to turn round, it

dragged on and on. I don't cook half as much as I used to and I'd forgotten

how many pans and dishes etc need washing up afterwards!

But the good thing was there were leftovers, a bonus for another day. xB

[vizzio in reply to wobblybee]

Hi Beryl, I don't cook much either I'm looking at a week's worth of washing up but at least there's enough there now to make it worthwhile. Finding the energy to do anything these days is a struggle. I've got a perching stool to help in the kitchen but it's difficult getting a comfortable position. Today I'm going to get dressed and venture out on my scooter only because I've run out of milk, so I cant have a cuppa til I've been to the shop. Enjoy your leftovers. xV

[wobblybee]

Also running short of milk, and I wanted to make a rice pudding! How

is it that either you've got so much you don't know what to do with it,

or there's only a few drops left before you actually notice?

Well, after Sundays marathon session, I really feel as though I don't

want to think much about cooking for the rest of the month! Last night

Brian had soup (it was homemade) and I had scrambled eggs on toast.

Next thing to tackle and I hate to have to admit it, is long overdue but

essential housework. I manage to keep us up to date with clean clothes

but ironing is a thing of the past. Because of my vision problems,

unless I have contact lenses in or my reading glasses on, grime and

cobwebs pass me by. However, when my brain's in gear and I do have

a good look around, I have to say I'm horrified to notice things that I've

just 'forgotten' to attend to for ages.

Fatigue, aches and pains, lack of concentration, forgetfulness and not

least of all poor balance etc etc, can quite easily take on a life of their own.

It can be overwhelming, I know this from personal experience. I was once

told it was merely a case of mind over matter, that is not true.

It took me years to get to the place I'm at now Vera, finally I'm at peace

with myself, if you know what I mean. xB

[vizzio in reply to wobblybee]

I know exactly what you mean Beryl, luckily I only have to look after me. I haven't ironed for yrs in fact I gave my daughter the iron last week as hers had broken. The housework gets done in dribs and drabs when I have a bit of energy which isn't very often. Had a visit from my daughter and her 3 boys this afternoon so I'm worn out now. xV

[wobblybee in reply to vizzio]

Put your feet up, have a nice cup of something and relax! xB

[Hidden]

Hi Vissio

Just a quick one to say hello and hope you're feeling a bit better. The fatigue thing is huge for me. I think you just have to listen to your body and take the rest you need.

Go steady.