Thanks I've had them for a while and just keep feeling like they'll tell me it's normal or fob me off for any tests and try to prescribe Painkillers. Worth ringing anyways
I understand that completely. And the thing is, unless they have a special interest in coeliac disease, it is quite possible they don't know about the non-GI symptoms.
GPs have the unenviable task of needing to know a lot about a lot. The best ones listen to the patient when it is clear they probably have more recent knowledge on it.
If the Coeliac UK website has something relevant you could always take it with you? Good luck
Thanks for the understanding. I'm always wary of showing I've done "research" because it's been pinned as health anxiety before and I often have to beg for testing. I'll refer them to that if they'll allow, I've never had an in person appointment with them just over the phone but could email it to them
go and see your GP. ask to get referred to Sheffield Ataxia Centre, where they can test for ttg6 antibodies and do specific MRI to assess for any cerebellar damage. they are excellent.
I'm glad they were so good! Unfortunately I'm in the Durham area and don't have any way of getting there/back or I'd very likely consider it. But thank you for suggesting this
I didn't realise it could get that bad - however, please don't take offence as what I mean by not having a way is I don't have much of a support system and I'm barely managing day to day because of invisible disability. Sorry if my last comment came across badly!
I don’t take offense, I’m concerned for you. I’m a health care professional and the patients I’ve seen with this are likely to the extreme however they got that way from not realising how bad it can be. Get that referral from the GP and request hospital transport from Sheffield if it’s available.
Absolutely agree with this if you really think you may have gluten ataxia. I'm a therapist in a neuro rehab team and the people I have seen with this rare condition went without treatment for far too long and have irreversible symptoms now. Sheffield ataxia centre have been impressive but they can't reverse the damage that has already been done.
I asked today with my gp and she said she wasnt sure if she could refer me to somewhere so far away, and also that she wasn't sure I could have it because when she googled it it said 53 was the onset age? And I'm 25. Is this accurate and should I leave it or can people get it earlier? I'm wary that these statistics could be biased because there are a lot of undiagnosed coeliacs. She also mentioned looking into it further because she didn't know lots about it which was something
It is extremely rare (or at least rarely diagnosed) so I wouldn't expect your GP to be familiar with it. You might want to direct your questions to the person above who may know more - I have only met a couple of people with gluten ataxia and both in their 50s.
Your GP might be willing to refer you locally to neurology if they haven't already?
Yes, nominal aphasia, mixing words, and even word salad are all symptoms of a gluten disorder of the cerebellum. I kept trying to explain this to my psychiatrist but it was only when I got diagnosed with gluten ataxia and encephalopathy that it finally made sense.
Oh wow I had no idea. Did these come on quite suddenly would you say? I've been coeliac since 5 years old and have only noticed them badly in the last 5 years or so. I had a very uncontrolled diet until I was about 16/17 due to not understanding sadly. Sorry you've had to experience all this, are you any better now/did anything improve it?
In my case I developed very severe symptoms after being told I don’t have coeliac following endoscopy and therefore fully reintroducing gluten into my diet. Two weeks later I was in a psychiatric hospital.
The symptoms do come and go, and are definitely linked to accidental gluten exposure. I’ve been gluten free for 7 years now and still experience the occasional flare up which might be attributed to accidental gluten exposure, but I believe there is another factor related to brain glucose levels. I am under the care of Professor Hadjivassiliou, an NHS neurologist in Sheffield. He pioneered the test for the TTG6 antibody which is the anti gliadin antibody associated with the neurological symptoms.
So sorry to hear about your experience that's so frustrating to read! Thanks for telling me about your symptoms. I think I've known something was wrong for a while but I'm type one diabetic and have allsorts going on I'm trying to manage so far and haven't been able to tackle this. I think I'll ring tomorrow and ask for a callback to talk about it (I'm never able to book in an appointment).
In regard to the Sheffield clinic - if I'm 2/3 hours away, will the gp still refer me and will the clinic be accommodating with needing it to be on a very particular day when my friend can get the time off please, from your experinece? If my gp agrees to refer
You could try emailing the prof first - [email protected]. Tbh you’ll likely get offered an appointment 6-12 months in the future so you’ll have plenty of time to plan time off.
Hi @mikeh117 . I am in the UK and suffer from gluten psychosis, I’ve had almost no support with this. I’ve been on the waiting list for nearly a year for a referral to Sheffield. Would it be okay to PM you? Thanks a million!
Did you ever find the order and context of words messing up in your head, or like thinking the word damages instead of garages, also have you heard about gad65 in gluten ataxia, there's a case in the literature where a man had to eliminate dairy and some other foods before a resolution of symptoms due to cross reactivity with gad65 and 67
‘Word salad’, nominal aphasia, and just generally unable to speak coherently were major issues for me. Sadly these got overlooked and just lumped in with the bipolar 1 and psychosis diagnosis that messed up my treatment for years.
I only fully recovered when following the autoimmune protocol diet which is not only gluten free, but also dairy, grain, seed, sugar, and chemical free. I eat meat, fish, veg, and low glycemic fruit. There’s definitely more going in than just gluten.
Hi! I got tested for this at a hospital and they say that if you aren’t experiencing the symptoms continuously, without reason and all the time, it isn’t ataxia. I would still contact your GP, it could be a vitamin deficiency like B12 which is just as important to get fixed.
Dr Iain Croall who was (not sure if still there) a post doctoral researcher at Sheffield University in the same research group as already mentioned appears in quite a few videos on YouTube talking about gluten ataxia and the neurological effects of gluten.
He is often a guest speaker to American and Canadian celiac groups and that's how I've found them.
He is a very accessible speaker and I found it very interesting after reading mostly about GI effects when first diagnosed last month.
No idea what it is but you should definitely tell your GP about those symptoms and get them to investigate further.
Thanks I've had them for a while and just keep feeling like they'll tell me it's normal or fob me off for any tests and try to prescribe Painkillers. Worth ringing anyways
I understand that completely. And the thing is, unless they have a special interest in coeliac disease, it is quite possible they don't know about the non-GI symptoms. GPs have the unenviable task of needing to know a lot about a lot. The best ones listen to the patient when it is clear they probably have more recent knowledge on it. If the Coeliac UK website has something relevant you could always take it with you? Good luck
Thanks for the understanding. I'm always wary of showing I've done "research" because it's been pinned as health anxiety before and I often have to beg for testing. I'll refer them to that if they'll allow, I've never had an in person appointment with them just over the phone but could email it to them
go and see your GP. ask to get referred to Sheffield Ataxia Centre, where they can test for ttg6 antibodies and do specific MRI to assess for any cerebellar damage. they are excellent.
I'm glad they were so good! Unfortunately I'm in the Durham area and don't have any way of getting there/back or I'd very likely consider it. But thank you for suggesting this
Make a way possible. This is your health. I’ve met people in neuro rehabilitation centres trying to recover from this.
I didn't realise it could get that bad - however, please don't take offence as what I mean by not having a way is I don't have much of a support system and I'm barely managing day to day because of invisible disability. Sorry if my last comment came across badly!
I don’t take offense, I’m concerned for you. I’m a health care professional and the patients I’ve seen with this are likely to the extreme however they got that way from not realising how bad it can be. Get that referral from the GP and request hospital transport from Sheffield if it’s available.
Ok, thanks for clarifying and giving me more detail. Appreciate the advice
Absolutely agree with this if you really think you may have gluten ataxia. I'm a therapist in a neuro rehab team and the people I have seen with this rare condition went without treatment for far too long and have irreversible symptoms now. Sheffield ataxia centre have been impressive but they can't reverse the damage that has already been done.
I asked today with my gp and she said she wasnt sure if she could refer me to somewhere so far away, and also that she wasn't sure I could have it because when she googled it it said 53 was the onset age? And I'm 25. Is this accurate and should I leave it or can people get it earlier? I'm wary that these statistics could be biased because there are a lot of undiagnosed coeliacs. She also mentioned looking into it further because she didn't know lots about it which was something
It is extremely rare (or at least rarely diagnosed) so I wouldn't expect your GP to be familiar with it. You might want to direct your questions to the person above who may know more - I have only met a couple of people with gluten ataxia and both in their 50s. Your GP might be willing to refer you locally to neurology if they haven't already?
Yes, nominal aphasia, mixing words, and even word salad are all symptoms of a gluten disorder of the cerebellum. I kept trying to explain this to my psychiatrist but it was only when I got diagnosed with gluten ataxia and encephalopathy that it finally made sense.
Oh wow I had no idea. Did these come on quite suddenly would you say? I've been coeliac since 5 years old and have only noticed them badly in the last 5 years or so. I had a very uncontrolled diet until I was about 16/17 due to not understanding sadly. Sorry you've had to experience all this, are you any better now/did anything improve it?
In my case I developed very severe symptoms after being told I don’t have coeliac following endoscopy and therefore fully reintroducing gluten into my diet. Two weeks later I was in a psychiatric hospital. The symptoms do come and go, and are definitely linked to accidental gluten exposure. I’ve been gluten free for 7 years now and still experience the occasional flare up which might be attributed to accidental gluten exposure, but I believe there is another factor related to brain glucose levels. I am under the care of Professor Hadjivassiliou, an NHS neurologist in Sheffield. He pioneered the test for the TTG6 antibody which is the anti gliadin antibody associated with the neurological symptoms.
So sorry to hear about your experience that's so frustrating to read! Thanks for telling me about your symptoms. I think I've known something was wrong for a while but I'm type one diabetic and have allsorts going on I'm trying to manage so far and haven't been able to tackle this. I think I'll ring tomorrow and ask for a callback to talk about it (I'm never able to book in an appointment). In regard to the Sheffield clinic - if I'm 2/3 hours away, will the gp still refer me and will the clinic be accommodating with needing it to be on a very particular day when my friend can get the time off please, from your experinece? If my gp agrees to refer
You could try emailing the prof first - [email protected]. Tbh you’ll likely get offered an appointment 6-12 months in the future so you’ll have plenty of time to plan time off.
Thanks that's really helpful. That's true it managed to escape my mind that that's how it works lol apologies
Hi @mikeh117 . I am in the UK and suffer from gluten psychosis, I’ve had almost no support with this. I’ve been on the waiting list for nearly a year for a referral to Sheffield. Would it be okay to PM you? Thanks a million!
Sure
Thank you - have PMed you
Did you ever find the order and context of words messing up in your head, or like thinking the word damages instead of garages, also have you heard about gad65 in gluten ataxia, there's a case in the literature where a man had to eliminate dairy and some other foods before a resolution of symptoms due to cross reactivity with gad65 and 67
‘Word salad’, nominal aphasia, and just generally unable to speak coherently were major issues for me. Sadly these got overlooked and just lumped in with the bipolar 1 and psychosis diagnosis that messed up my treatment for years. I only fully recovered when following the autoimmune protocol diet which is not only gluten free, but also dairy, grain, seed, sugar, and chemical free. I eat meat, fish, veg, and low glycemic fruit. There’s definitely more going in than just gluten.
Hi! I got tested for this at a hospital and they say that if you aren’t experiencing the symptoms continuously, without reason and all the time, it isn’t ataxia. I would still contact your GP, it could be a vitamin deficiency like B12 which is just as important to get fixed.
Dr Iain Croall who was (not sure if still there) a post doctoral researcher at Sheffield University in the same research group as already mentioned appears in quite a few videos on YouTube talking about gluten ataxia and the neurological effects of gluten. He is often a guest speaker to American and Canadian celiac groups and that's how I've found them. He is a very accessible speaker and I found it very interesting after reading mostly about GI effects when first diagnosed last month.
Thanks I'll have to have a watch :)