Undiagnosed

Undiagnosed

Hi,

I have been trying to get a diagnosis for my problems for18months. It started Dec 2011 I had flu/ chest infection. I won't bore you with all my symptoms but the main ones are inability to walk at a normal pace, fatigue and balance problems. I have seen 3 neurologists now waiting to see another one in Sheffield to confirm gluten ataxia.

Does anyone else have gluten ataxia and if so how long did it take for you to be diagnosed and what treatment, if any, have you been given?

I am finding it very hard to cope with all the uncertainty and the fact that this illness, has made me unable to continue working. Waiting for a decision re ill health retirement from the NHS. Looking forward to talking to people who understand the difficulties that I encounter.

17 Replies

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  • Hi! Yes I'll send you a message about this as I have gluten ataxia and retired last year and am at Sheffield with prof H.

    Chat soon!

    FeelingOurWay

  • Hi, Sorry to hear you have been waiting so long for diagnosis. This is the worst time when

    you are trying to come to terms with your symptoms and would like to know why you are

    feeling so tired and especially when your mobility is decreased. Hope it won't be too long

    now for a diagnosis and then you can deal with the symptoms and also get your finances

    sorted out with regards to health retirement. Kind regards

  • Thanks dollydippy! Yes I just can't wait to see this guy in Sheffield to help me make sense of it all. I'm so glad I found this site, thanks again

    Best wishes

    Chris8

  • Hi chris8. You are very welcome. dollydippy

  • It took two years to have a diagnosis and after three years I still do not know which type of Ataxia I have except that it is not vitamin defiency or gluten intolerance I believe the gluten intolerance type can be treated ( I hope I have this right)Good luck with your progress I realise it takes a while to come terms with the problem but I wish you the very best.

  • Hi Laddie, It's strange isn't it? We see a consultant and expect that they will come up with a diagnosis. It never entered my head that a) this far along there would be no diagnosis and b) that I would still be suffering the same symptoms. As far as the lack of a diagnosis goes I blame the medical TV shows! When was the last time they ever ran a story that the patient didn't get a diagnosis? Anyway fingers crossed I'll get mine soon and I hope you get an answer re what type of ataxia you have:-)

    Best wishes

    Chris8

  • I have an appointment at the John Radcliffe Centre but not until 26th July when I hope to at least more information but I have to learn to be more patient the NHS moves so slowly! I am now seeing a councellor but I only feel better for a few days after talking to her.What conclusions I have reached is it all returns to me Ihave to help myself.

  • Yep the NHS is very slow I guess we just have to grin and bear it! I get very low some days, although I haven't seen a councellor I think talking is a good therapy. It is very hard to explain to someone else how you feel about the situation that you find yourself in,but your councellor must be good if she makes a difference,even if it is only for a few days :)

    With me my mood is governed by how restricted I feel by my body. I also have noticed that members of my family treat me differently because of the problems I've got with walking talking and remembering things. But inside you and me are still the same person we were before we got ill! I have realised that I feel better by just getting out, even if it's just sitting in the garden (when the sun's out) listening to the birds! Sorry I'm rambling on a bit now aren't I? Well I think considering what we are all going through we shouldn't beat ourselves up about feeling low, it's bound to happen sometimes. Hope you're having a better day today

    Chris

  • Once referred to Prof H by my GP, it was only a matter of weeks before I was diagnosed with gluten ataxia. However he carried out many tests which eliminated other possibilities before coming up with the diagnosis. It is my understanding that by maintaining a totally gluten free diet then the symptoms will hopefully not get any worse. I have been on my diet for about 7 years now with no noticeable deterioration.

    But what makes you think that gluten is the cause if you haven't had a diagnosis yet?

  • Hi Mylie,

    Sorry I was a bit tired when I wrote the blog so left out quite a lot. Basically in 2006 I had very similar symptoms which led to me being diagnosed as coeliac. A year later I was back to normal and returned to work. Everything up until 2011 was hunky dory, I was the fittest I've ever been. Was going to the gym 2 to 3 times a week and lost 3 stone in weight. Since being diagnosed coeliac I have stuck to a gf diet, but the third neurologist I saw said he thinks I have non intestinal manifestations of gluten sensitive enteropathy and he referred me to his "friend" Prof H.

    Apparently there are some people who although they are gf their immune system is triggered into reacting as though they had eaten gluten. But, here's the strange bit, instead of attacking the intestines the antibodies go for your cerebellum.

    So that's why I'm waiting to get this appointment through for Sheffield and I really hope it will be soon. It's 13 weeks since they received my referral and I'm hoping they stick to the 16 week rule for new referrals! :)

    Best wishes,

    Chris8

  • Hi Mylie!

    Just wanted to say hello as another gluten freebie. I've been GF now for nearly twenty years and was one of the first to be diagnosed by Prof M.

    If you'd like to chat,do drop me a message! It'd be nice to swap news and views!

  • Do you find it expensive to be GF

  • Yes! But having a prepayment prescription card helps.

    They are not allowed to issue biscuits and the nice things anymore so buying these is expensive bit you need a bit of comfort eating when you're on this strict diet and it's for life!

    Are you on gluten free diet? If I can help with managing it please do just ask. It's not easy when you first start because of cross contamination.

    See driver for details!

  • Hi Mylie!

    Nice to see another gluten ataxic here! Hows its going?

    If you'd like to chat, I've love to swap notes and see how its going for you.

  • It's so frustrating having to wait for a diagnosis. Although I have ataxia, I don't have Gluten Ataxia, but many people on this site do. I hope you get the answers you deserve soon! Also, I live in the US and our disability laws are different than yours. Thinking of you..., ;o)

  • Hi February,

    Thanks a lot for your kind words! I am naturally an optimist, my glass is always half full but this situation is enough to try the patience of a saint;) Still I just take each day as it comes and rush to grab the post in case it's THE letter from Sheffield. Hope you have all the info/diagnosis that you need to deal with your situation.

    Best wishes,

    Chris8

  • Hi all,

    Good news! I have an appt with Prof H in Sheffield 31st July at 9am. If any one is a patient there and has recently had their first appt could you tell me what happens? Obviously they ask for your medical history but do you have any tests that day or do they make you go back for them?

    Thanks,

    Chris8

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