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Gluten Ataxia

jennysoul

By jennysoul
in Doctors

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jennysoul Newbie
jennysoul
Posted

Hi all, i'm wondering if any one could tell me what specific mri tests should be performed to check for gluten ataxia, as i have all the symptoms of gluten ataxia, and just want to get it right.

medical proffesion in Australia dont seem to know much celiacs let alone gluten ataxia, and i need help!

i know it is to do with the cerabella and atrophy ect,

been gluten free 2 years with great success, all symptoms gone except , my ataxia. thanks

kind regards jenny

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ravenwoodglass Mentor
ravenwoodglass
Posted

I also have ataxia. The only test I know of is an brain MRI which can show brain white matter lesions. They look like glowing spots on the MRI that are similar to but not in the right place for MS. Unfortunately to my knowledge there isn't anything they can do for this.

Being gluten-free has gotten me off my canes and away from walls and after 5 years I have accepted that I will always have a bit of a problem in this area. Physical therapists helped a great deal with the balance issues, helping me to strenghten my core muscles and such but a bit still remains.

One thing I should note though is that I saw no improvement in the ataxia until I became very 'paranoid' about gluten in everything, food and non food alike. I hope you get a bit more resolution to this, it can take much longer for this sort of symptom to resolve than the GI ones. Oh and most important get some sublingual B12, gluten-free of course that did help a lot also.

jennysoul Newbie
jennysoul
Posted
  • Author

thank you, i'm having an MRI very soon. so we'l see for sure i suppose what it is. i do take subl B12 but only just recently. just so tired from all the rocking and bobbing i have. my balance is shocking.

i had an Mri 11 years ago so if something isnt showing by now , it never will. i'm like every one , i just want answers. and i worry so about my daughter. with this celiacs thing.

kind regards jenny

jennysoul Newbie
jennysoul
Posted
  • Author

hello , could you tell me if ataxia is progressive or not.

jenny

ravenwoodglass Mentor
ravenwoodglass
Posted
hello , could you tell me if ataxia is progressive or not.

jenny

Yes, but that progression can be very slow. For example with me, in childhood I lost leg reflexes, began to drag one leg and started to stumble and 'cruise' off walls and I fell a lot. Things remained basically the same for many years and then after my daughters birth in my late 20's things started to progress more quickly. I started to feel like I was always about to fall and would lose my balance if I turned suddenly, walked on uneven ground or even just changed my line of sight quickly. Eventually I became incontinent, great when you have constant D and my hands started to 'go' (dropping things constantly). I also lost feeling and gained a pins and needle sensation in hands and feet. This was the point where they started to say MS. Many of these neuro presentations were relieved after 6 months to a year gluten-free, some are still healing but I believe at this point that the damage was to long standing for me to get complete remission but I am happy just to be able to type, walk across a parking lot without assistance, go up stairs (still have great difficulty going down them) and carry my cup of coffee and actually feel it in my hands.

marciab Enthusiast
marciab
Posted

Jenny

Here are some websites I have found on gluten ataxia. Number 5 tells you what kind of MRI they recommend to diagnose this.

On a personal note, I came down with CFIDS / FM back in 1990 and at that time my symptoms included ataxia, myoclonus, fatigue, pain, brain fog, etc. I'd had problems with ataxia, balance and periods of blacking out as a child, but outgrew it ...

I eliminated gluten back in Sept 2005 and my ataxia vanished as of September 2006. My legs no longer feel heavy or forget how to walk. I don't lose my balance and I no longer have orthostatic hypotension. I'm still struggling with fatigue, swollen lymph nodes, etc.

Like Ravenwood, I had to get all possible gluten out of my diet, house, etc. but I had to because I will get my myoclonus, insomnia (awake all night long) and watery "D" back. I have never gotten the ataxia back though ... I use B12 injections, but they never made a difference in the ataxia.

1 - Open Original Shared Link

Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics

HADJIVASSILIOU Marios (1) ; GR

jennysoul Newbie
jennysoul
Posted
  • Author

Dear 'ravenwoodglass' and Marcia, thank you sooo much for answering my Questions, i'm feeling realy worried and wish this would all go away. i'm so sorry you've had so many problems with this stupid gluten thing and i hope we all can get better by staying gluten free.my issues are very much my balance, swallowing, brain fog, is terrible with a bit of memorie loss thrown in. How anoying.

i just wish we all had of known before it attacked our brains. i makes me feel sick even thinking about it.

i didnt get back to you quickly, for some reason when ever i log in here, it try's to stop me, and i have to keep getting a new password ect. dough! i'm not great with computers. he he

i'll say a little preyer for us all. thanks again. jenny

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GB&Free Newbie
GB&Free
Posted

... most important get some sublingual B12, gluten-free of course ...

Hi, Everyone

I am new to Celiac.com, but found this discussion and website references helpful in trying to figure out what is going on with me

ravenwoodglass Mentor
ravenwoodglass
Posted
Dear 'ravenwoodglass' and Marcia, thank you sooo much for answering my Questions, i'm feeling realy worried and wish this would all go away. i'm so sorry you've had so many problems with this stupid gluten thing and i hope we all can get better by staying gluten free.my issues are very much my balance, swallowing, brain fog, is terrible with a bit of memorie loss thrown in. How anoying.

i just wish we all had of known before it attacked our brains. i makes me feel sick even thinking about it.

i didnt get back to you quickly, for some reason when ever i log in here, it try's to stop me, and i have to keep getting a new password ect. dough! i'm not great with computers. he he

i'll say a little preyer for us all. thanks again. jenny

Jenny, when you log in there is a couple buttons on I think it is the far right. With these you can log in forever without having to sign on everytime. I use them cause even if I write down my passwords I can't remember where I put the paper.

  • 3 months later...
Guest Waldenflo
Guest Waldenflo
Posted
Jenny

Here are some websites I have found on gluten ataxia. Number 5 tells you what kind of MRI they recommend to diagnose this.

On a personal note, I came down with CFIDS / FM back in 1990 and at that time my symptoms included ataxia, myoclonus, fatigue, pain, brain fog, etc. I'd had problems with ataxia, balance and periods of blacking out as a child, but outgrew it ...

I eliminated gluten back in Sept 2005 and my ataxia vanished as of September 2006. My legs no longer feel heavy or forget how to walk. I don't lose my balance and I no longer have orthostatic hypotension. I'm still struggling with fatigue, swollen lymph nodes, etc.

Like Ravenwood, I had to get all possible gluten out of my diet, house, etc. but I had to because I will get my myoclonus, insomnia (awake all night long) and watery "D" back. I have never gotten the ataxia back though ... I use B12 injections, but they never made a difference in the ataxia.

1 - Open Original Shared Link

Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics

HADJIVASSILIOU Marios (1) ; GR

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