Sheffield and autoimmune treatment

[penelope2]

Hi all, is there anyone with gluten ataxia?Please can you say if you are seeing Professor Hadjivassiliou at Sheffield.

And receiving treatment and medication for autoimmunity.

I am interested to know just how many receive treatment other than going "gluten free".

I have already seen the Professor who told me that only those that don't respond to a GF diet receive treatment. Need to weigh up travelling to Sheffield and only to be told 'carry on with the GFdiet'. The blood tests were negative for gluten antibodies as I had been off gluten for nearly 2 years. So self diagnosed. Travelling to Sheffield means at least one overnight stay.

This is a really big deal for me as having an MRI too, which again if told 'you have cerebellar ataxia' is it worth it? Which I have already been told.

Thank you.

[wobblybee]

🤔 Are you saying…you haven’t actually had an official diagnosis of Gluten Ataxia. But..you self diagnosed after having good results from a Gluten Free Diet.

[penelope2 in reply to wobblybee]

Yes knowing that time was of the essence, someone told me about gluten ataxia and I thought going gf and to see how I responded was worth it. Knew quite quickly by ataxia reducing that I was onto something. Brain fog lifted first then slowly over months the peripheral neuropathy in my feet and legs lifted. Had a private blood test for cross reactive foods and following results went dairy free, rice and buckwheat free too. Rice is in most gf foods. Prof H said I probably have gluten ataxia but no antibodies were picked up as I've been gf for so long and I was not willing to do a gluten challenge which he understood. Apparently a lot of ataxia patients self diagnose. Unfortunately damage to cerebellum cannot be reversed but I have stabilised.

[wobblybee in reply to penelope2]

🙂 It’s good to hear you were able identify Gluten was a trigger, and that by being vigilant you’ve seen a such an improvement.

I did wonder if I had Gluten Ataxia myself but I tested negative. Although I still wonder if I have some Gluten Sensitivity..

I can well understand your reasons for not wanting to have official confirmation, I wouldn’t want to introduce triggers knowing what would happen.

I’ve seen posts on Facebook groups from people who have Immunotherapy for Autoimmune Ataxias…but can’t recall anybody specifically mentioning Gluten Ataxia.

[penelope2 in reply to wobblybee]

Thank you for that. As I understand it the coeliac test, which is done in NHS hospitals, is different for gluten ataxia, which is only done at Sheffield and with it taking a long time to get referred and time is so important. It feels to me that ataxia patients are left a bit on the shelf, perhaps it is because there is no cure, or perhaps I've been unlucky. Whatever with more understanding perhaps things will improve. This is why I have taken so much of my health care upon myself and have lost faith with doctors and neurologists. I'm afraid that things won't improve any day soon!

[Cupcake12345]

I see Professor Hadjivassiliou and I live in London but I think he’s worth seeing as he does tests they don’t do here. Now I did have gluten antibodies and have been gluten free for 12 months, I was put on immunosuppressants 8 months ago and have had no issues despite having three school age teenagers who are always ill! I have had four MRIs this year and he has just told me the deterioration has stabilised. My ataxia was really bad and I was in a wheelchair after three years. He has said that the ataxia is so severe that they can only hope for stabilisation with little chance for improvement. If you have any questions I’m happy to discuss.

[penelope2 in reply to Cupcake12345]

It wasn't until about 11 years ago with children grown up and left home that Ataxia symptoms started for me and now in my 60s so I really feel for you bringing up a family.If the first neurologist had picked up ataxia and suggested try going gluten free instead of saying "everything is normal" then the irreversible damage might not have happened for me, but then we all know about speed, or lack of it, with healthcare professionals.

I have decided to go to Sheffield again and have the spectroscopy and see if 'carry on with the gf diet' is the advice given.

We really need more understanding and knowledgeable doctors and neurologists to get a grip on this awful condition. It really saddens me that such a life changing condition is so little known about, and those that do are so few and far between!

Take care

[Cupcake12345 in reply to penelope2]

I was 42 when diagnosed with ataxia. The London neurologist assumed it was hereditary and nothing was done as the tests were negative. I was pretty much left to deteriorate quickly and now it is too late. They then referred me to Shefford and I feel like he has done more in one year then has been done in six in London. With Covid everything was delayed, had I been seen before Covid, I would think everything would be a little bit better than it is now being housebound. I am thankful I went to Shefford, but wish I had gone sooner.

[penelope2 in reply to Cupcake12345]

Oh you poor thing. So are you saying that UCLH kept running tests looking for hereditary ataxias and all tests were negative for 6 years!Have you questionned this?

Firstly with UCLH and does Ataxia UK know about this? They provide financial support for UCLH. And what did Professor Hadjivassiliou say?

I can understand it would be difficult for you but it sounds like there could be negligence.

Who did you see at UCLH, I saw Dr Hector Garcia-Moreno and he wanted me to have more tests for hereditary ataxias but I wanted a referral to Sheffield and finally he agreed.

I don't want to upset you at all and I'm sure you would have discussed this with your family. Sending you the best wishes and take care of yourself.

[Cupcake12345 in reply to penelope2]

I have not raised the subject with either hospital I am just happy they agreed to refer me to Sheffield. I see Professor wood at UCLH the only MRI I had was done by the private London clinic in 2016, and the neurologist told me to go away and deal with it. The GP said this was ridiculous and referred me to UCLH where other tests like lumbar puncture were done at UCLH in 2017. The GP then said on the NHS you are entitled to a second opinion and get UCLH to refer me to Sheffield. I wouldn’t know how to raise the subject with the hospitals.

[suzie44na]

Hi, I was told I don’t have gluten ataxia, I do have dysmotility though. I do think it is worth having MRI scans because they can look for lots of different things. All the best.

Suzie

[penelope2 in reply to suzie44na]

That is interesting and yes I have decided to go to to Sheffield again, if only to get a definite diagnosis of gluten ataxia. Thank you and take care.

[Pacitto]

On my last visit to Sheffield I had to have quite a few new blood tests done also as my Ataxia had progressed. The blood tests were unusual from the normal ones I had had previously. Another spiro brain scan was requested, which was done on 21st December 2022. Originally diagnosed with episodic ataxia.I have not had the results of the brain mri as yet, however have received a letter from my consultant to say that previous results were high for gluten ataxia but now confirmed 100 percent are gluten proteins. It went on to say that this shows that there Is another cause for my ataxia and to follow a normal diet for the time being until my brain scan is analysed and given the results. I am to ring the ataxia nurses for on going support until the results are known.

Of course I am now wondering is this going to be Gluten ataxia or something else ?

A faulty gene from gene testing resulted in me being a carrier for Tay sacs disease from my father's side.

Sheffield are being very thorough with me I am 72 years of age......so Penelope2 my answer is its up to you to decide what to do I can only advise off of my experiences. Good luck and take care x

[penelope2 in reply to Pacitto]

I have decided to go to Sheffield again. The reluctance I felt was down to how I feel physically and mentally on a gluten free diet. Both improved and ataxia symptoms stabilised so this gives me the motivation to carry on gf. It is not easy especially when dairy free too but for me it has become the norm. I do hope you find out what is causing the ataxia for you. Take care

[KiwiBob]

Hi Penelope2

I have Gluten Ataxia. I travel down from the West of Scotland to see Prof H each year.

I think it is worth while to see him as I fought for 19 years to get diagnosed. The brain scan helps to let me know if I am getting worse or staying the same.

Also I get the bloods done for gluten. Prof H wont be happy this time as I have cheated on my gluten intake a couple of times over the last few months.

But it's up to the individual if they want to see Pro H.

All the best.

[penelope2 in reply to KiwiBob]

That is a long way to travel. Travelling when you have ataxia is not easy. Obviously you find it difficult to stick to a gf diet. I'm dairy free and buckwheat too, and just started eating a small amount of rice which is in most gf foods. So really restrictive. But find the results of stabilised symptoms well worth it. I had a dream last night about eating croissants, which was really funny.

Take care