Gluten and food avoiding to help Ataxia?

[penelope2]

Hi everyone, Health Unlocked is helpful with topics and information but also makes me realise that their others facing the same problems!

Well I would like to hear from anyone who has a non Celiac gluten sensitivity. How did you find this out?

Also if you have gluten ataxia diagnosed or waiting for diagnosis?

Did you self diagnose?

And lastly, have you any other food intolerance or sensitivity? And how did you find this out?

I would also be very interested to hear from anyone who has gone gluten free to try and stabilise their ataxia.

Thank you all. Onwards and upwards 👍

[Sheffield6]

I have gluten ataxia and have being on a gluten-free diet for three years. It’s made no difference in fact my ataxia is not worse.

[penelope2 in reply to Sheffield6]

Hi Sheffield6 and thank you for replying.Sorry that your ataxia is worse, so did you have help with going gluten free or did you go it alone?

So many questions but I am interested in building up a picture of what is happening in the world of ataxia.

I have been GF for 18 months now with no help or recommendations, but also now dairy free and rice free following a private blood test and advise from a nutritional therapist.

Days still vary but I have stabilised during this time.

X

[penelope2 in reply to Sheffield6]

Sorry just reread your reply and I think I misread it. So your ataxia has stabilised, if so then that is great 👍

[cocoa]

I have idiopathic cerebellar ataxia diagnosed about 15 years ago.

I have always had digestive problems, so when I was diagnosed with ataxia, I decided to search for answers myself. I realised that having all tests via the NHS, which ruled things out, I wanted answers to help me manage my condition.

I contacted a nutritionist privately bant.org.uk

She identified foods I was intolerant of. She also advised supplements to take. I take no medication.

My digestive problems have definitely improved. Ataxia has not gone away but I do know that when my tummy is not working properly, the ataxia is a lot worse.

[penelope2 in reply to cocoa]

Hi cocoaThank you for replying. How is the ataxia now, have you stabilised?

Your story sounds like mine, I too sought out the help of a knowledgeable nutritional therapist.

Had a private blood test too which said dairy, rice and buckwheat was a problem so been free of all these too.

My doctor and neurologist didn't recognise these so no help there.

I have a referral to Sheffield in July which I asked for from UCLH.

My days do vary too, fatigue is a lot better and other symptoms have improved slightly but now stabilised.

I am not on medication but take a number of supplements.

I have found the NHS is really lacking with knowledge in the whole area of Ataxia and I am trying to build up a general picture why this is so????? MS, MND and other neurological conditions seem to have a much higher level of NHS care and approach.

Is this because there are no NICE Guidelines for ataxia or lack of interest by doctors etc?????

X

[cocoa in reply to penelope2]

I have good days and bad days and have to learnt to live with it. If I overdo things, then I suffer afterwards.

I went to a private GP when I was getting no help. He suggested vitamin B12 injections and I still have these because they help. I have asked for these on the NHS but my neurologist is unable to offer them. I asked my private GP to write a letter to the neurologist and the Ataxia Clinic and am awaiting the outcome next month.

I asked for a referral to Sheffield and was told to ask my GP, and he refused.

I take part in research via Oxford. I have also been enrolled on the 100,000 genome project but still with no answers.

When I was first diagnosed I found a leaflet at my GP surgery about The Expert Patient Programme. I enrolled and found it very helpful. It gave me the confidence to find help. It was a 6 week course, free of charge. It may be different now but it is the best thing I could have done. Lots of useful information ... where to get help, who to ask, what you are entitled to.

[SueMillman Partner Ataxia UK in reply to penelope2]

The problem for the ataxias are that they are very rare. MS is much more common. MND is also rare in the population, but because it progresses very quickly, over time, many more people are affected. We have looked at working with NICE to create guidelines but the process is very complicated and lengthy - it also depends on them agreeing to select the ataxias for guideline development, and so many conditions are in the queue. We are hopeful that in the near future the NHS may agree a patient treatment pathway for the ataxias. In the menawhile we have our Medical Guidelines ataxia.org.uk/healthcare-pr... which have been endorsed by the European Academy of Neurology.

[wobblybee]

I tested negative for Gluten Ataxia (Celiac)..But that doesn’t mean I may not have Gluten sensitivity.

In the past, I’ve been diagnosed with Candidiasis (by a Kinesiologist). I’m especially sensitive to yeast and sugar. Candidiasis can cause Neurological symptoms similar to ataxia.

[penelope2 in reply to wobblybee]

Hi wobblybee.Thank you for replying. Was the candidiasis tested. I doubt the NHS do this so did you go private.

I have read many of your posts and I too suffer with dizziness, for me this is caused by an inner ear dysfunction, probably a virus.

But again diagnosis but no help or treatment.

Why are us ataxians just left to get on with IT???????

I am trying to build up a picture of Ataxia and its treatment. Why if you have say MS is treatment so different?

Acceptance and "go away and get on with it" are not a treatment!

Onwards and upwards.

[wobblybee]

I’d been back and forth to my GP because of dizziness and brain fog (this was during the 1990s-2010). We moved house and I heard about a Kinesiologist, and Herbal Nurse (privately) I saw both of them, and they both decided I had Candidiasis based on specific symptoms I was experiencing (digestive-balance-brain fog). But, it seems so long ago now I don’t actually recall very much detail....I still have problems with brain fog.

For several years I coped with undiagnosed BPPV (Benign Paroxysmal Posterior Vertigo)..I now know there is a test..The Hall-Dixpike Test. As far as I know this isn’t caused by a virus. Sometimes, BPPV can be greatly alleviated by the Epley Manoeuvre, sadly it hasn’t worked for me, even after numerous sessions.

BPPV is caused by ‘crystals’ being in the wrong place in the inner ear, the manoeuvre is supposed to realign the ‘crystals’

Ataxia is frustrating, to say the least.

I feel at my best just sitting still, my Vestibular issues are much less exhausting..but really I’m not doing myself any favours because it’s twice as hard getting in motion again.

Today, I went with my daughter and granddaughter to a children’s funfair..it was lovely being out in fresh air and sunshine, and of course with my young granddaughter. But, the noise was overwhelming ..the ground was uneven, and I spent a lot of time looking up watching..so it triggered disorientation with all the multitasking 🙈

But..things settled eventually 🙂

[Piero]

Penelope, I simply did all I could to remove gluten from my diet. The results have not been dramatic. I haven't started to sprint around the block every evening but I have the feeling that the pace of my decline has slowed down.