Brilliantly explained I got diagnosed with gluten ataxia June 2022 by professor Hadjivassiliou and been trying to explain to family and friends what it is I have and what happens when I consume gluten but never really been able to put it as clear as you have thank you
Hey Chris, thank you so much for taking the time and effort to go through this, and for your previous video about how you came to get diagnosed. I am currently provisionally diagnosed by GP with Meniere's disease which sounds very similar to your ear related symptoms - the first symptoms I took notice of were dizziness and vertigo last August - pretty hard to ignore them haha. I had already had tinnitus creeping up for a while. Then I started to get uncomfortable sensations of ear pressure, and hyperacusis (sensitivity to sound), my tinnitus has got more noticeable and I get muffled hearing that comes and goes. My balance has completely gone to pot. I know this is common for people who have had vertigo as your brain has to learn how to respond again, but my severe vertigo has been under control for a while but I struggle to keep upright for no reason. I also have other possible neurological issues such as random pain and sensations - shooting pains, buzzing sensations, etc. My Dad has gluten ataxia and peripheral neuropathy, and I am quite rightfully concerned that this could explain all of my issues. He's actually a regular patient at Sheffield under the fantastic team there. I'm 38 and I'd rather nip it in the bud before things progress if gluten is the cause - but I'm struggling to be taken seriously and things with Drs are moving so slow! You mentioned it was a balance clinic that initially suggested the gluten link and they referred you onwards? How did you get to got to the balance clinic? Did you need to ask GP? I have trouble advocating for myself in the face of medical professionals minimising my concerns and actually suffer with verbal shutdown in those situations 😕
Hey, hope you're doing well. Your symptoms sound a lot like how mine were at the start and with your Dad having a diagnosis of gluten ataxia, I'd agree that you're definitely right to want to nip it in the bud before it becomes something even more serious than what you have right now. I went to the balance clinic out of frustrations from not getting anywhere with the NHS. I found it myself online and it was private so I paid for it myself. The balance clinic is in Sheffield and it was here that the consultant who works there happened to know Professor Hadjavassilou at Sheffield and he put the referral through for me to see him on the NHS. I would recommend perhaps writing down everything you want to say to your GP and you could call to ask if you can send your GP an email and send this info to them and ask for the referral? I think if you mentioned that your dad has a diagnosis and that there is a chance of this being hereditary then they should take it seriously.
I have this too. But I was getting tension headaches, stammering or not being able to articulate words, feelings of overwhelm, ear popping occasionally… I think there is a link to anaemia with people who have gluten sensitivity which can exacerbate symptoms further
That's interesting regarding the link to anaemia, I was going to start take vitamin B12 supplements to help with some of the light headedness/tiredness so if this helps then it could be due to a link with anaemia
Terrific informational video! I’m in the US and interested to get the lab test transferred here so that it’s an option for diagnosing this disease. Do you have a contact at Sheffield to discuss how to make that happen?
Does the test for the ataxia protein work the same way as the one for coeliac? I have had these symptoms and don't want to eat gluten anymore. If I have the test done in a month or so, will it be negative because I've cut gluten out?
Thanks for the video. I measure ttg6 thru Cyrex Labs, I live in the USA. Can you ask Marios if he believes this is a legitimate test for ttg6. Gluten ataxia is not diagnosed in the USA. Thanks. Doyle
Hi, unfortunately that's not the kind of thing that Marios would go into details with me about but it might be worth calling the clinic directly to speak to them?
I’ve been self diagnosed as having gluten sensitivity for years and only recently found out about gluten ataxia. And now I am kind of concerned that I could have it. For years now, if I get any type of cross contamination my mind immediately gets cloudy and my face burns up like I have a fever. After that I start to become unable to really talk or move that well. And when walking I’ve been told I look drunk. I also feel very drunk and out of it. I’ve even felt pressure building up in my head once after eating a Reese’s cup and when I was walking it felt like I was about to pass out and felt extremely weak for some reason. The problem is that I don’t know how to get tested for this without a blood test, and those would have me going back on a diet of gluten for 6 weeks. Which could be VERY bad if I have gluten ataxia. Not to mention that I’d be bedridden. So my question is do you think I have gluten ataxia and should be extra cautious around gluten? Cause this whole time I thought people with gluten sensitivity and celiac could manifest symptoms like this. Sorry for the long winded comment 😅 and kudos for sharing your story around😁
Hi, gluten ataxia can lead to quite a broad range of symptoms so I can't say for certain whether I think it sounds like you have gluten ataxia, plus I'm not qualified to say whether I think that or not, but you do have a lot of the same symptoms that I had and personally I wouldn't go near any gluten now so that I don't have any further damage
Is Gluten ataxia characterized basically by impaired cerebellar function, which mainly affects balance and walking? My doctor told me that if my balance is good then he doesn't think it's Gluten Ataxia.
Yes, but in the earlier stages of damage you may appear unaffected most of the time as the brain compensates and masks the effects of the damage. It may be more noticeable when you are tired or run down - you may start to seem unsteady on your feet and slur your words as if you are drunk. Sadly most people only get picked up once major damage is done that is obvious at all times. There are also other areas of the brain that can be affected which cause other clusters of symptoms - these are caused by white matter legions and cause frequent (almost daily) headaches, brain fog etc. There is also gluten caused peripheral neuropathy which causes numbness, tingling, pain, changes in sensation in feet, hands etc. This can also lead to balance issues as someone finds it hard to feel where their feet are. Some great information in this video - a talk by a colleague of the Dr Hadjivassiliou that everyone knows at Sheffield. th-cam.com/video/cPrc5WOpnXU/w-d-xo.htmlsi=_bxd1ZLhGr5cJa-v
It's seems like basically all information on Gluten Ataxia is coming out of Sheffield. I wonder if there's any practice in the US I can turn to about this. My doctor doesn't seem to know much about this (although he's a Celiac expert)
@@SolGoldberg-up3dp I completely agree with you!!! I've got a wide variety of random chronic illnesses I'm trying to figure out. I'm also in the States and there is SUCH a low number of folks here that discuss anything like this. But I have found a TON of disability advocates, educators, and more tied to the UK and their NHS systems!!!
Brilliantly explained I got diagnosed with gluten ataxia June 2022 by professor Hadjivassiliou and been trying to explain to family and friends what it is I have and what happens when I consume gluten but never really been able to put it as clear as you have thank you
Thankyou, I'm glad that I could help to explain it clearly and hopefully has been some use for you in telling others 🙂
Hey Chris, thank you so much for taking the time and effort to go through this, and for your previous video about how you came to get diagnosed.
I am currently provisionally diagnosed by GP with Meniere's disease which sounds very similar to your ear related symptoms - the first symptoms I took notice of were dizziness and vertigo last August - pretty hard to ignore them haha. I had already had tinnitus creeping up for a while. Then I started to get uncomfortable sensations of ear pressure, and hyperacusis (sensitivity to sound), my tinnitus has got more noticeable and I get muffled hearing that comes and goes. My balance has completely gone to pot. I know this is common for people who have had vertigo as your brain has to learn how to respond again, but my severe vertigo has been under control for a while but I struggle to keep upright for no reason. I also have other possible neurological issues such as random pain and sensations - shooting pains, buzzing sensations, etc.
My Dad has gluten ataxia and peripheral neuropathy, and I am quite rightfully concerned that this could explain all of my issues. He's actually a regular patient at Sheffield under the fantastic team there. I'm 38 and I'd rather nip it in the bud before things progress if gluten is the cause - but I'm struggling to be taken seriously and things with Drs are moving so slow!
You mentioned it was a balance clinic that initially suggested the gluten link and they referred you onwards? How did you get to got to the balance clinic? Did you need to ask GP? I have trouble advocating for myself in the face of medical professionals minimising my concerns and actually suffer with verbal shutdown in those situations 😕
Hey,
hope you're doing well. Your symptoms sound a lot like how mine were at the start and with your Dad having a diagnosis of gluten ataxia, I'd agree that you're definitely right to want to nip it in the bud before it becomes something even more serious than what you have right now.
I went to the balance clinic out of frustrations from not getting anywhere with the NHS. I found it myself online and it was private so I paid for it myself. The balance clinic is in Sheffield and it was here that the consultant who works there happened to know Professor Hadjavassilou at Sheffield and he put the referral through for me to see him on the NHS.
I would recommend perhaps writing down everything you want to say to your GP and you could call to ask if you can send your GP an email and send this info to them and ask for the referral? I think if you mentioned that your dad has a diagnosis and that there is a chance of this being hereditary then they should take it seriously.
Thanks for sharing yor story 🙏
You are welcome🙂
I have this too. But I was getting tension headaches, stammering or not being able to articulate words, feelings of overwhelm, ear popping occasionally… I think there is a link to anaemia with people who have gluten sensitivity which can exacerbate symptoms further
That's interesting regarding the link to anaemia, I was going to start take vitamin B12 supplements to help with some of the light headedness/tiredness so if this helps then it could be due to a link with anaemia
Terrific informational video! I’m in the US and interested to get the lab test transferred here so that it’s an option for diagnosing this disease. Do you have a contact at Sheffield to discuss how to make that happen?
Hi, that sounds like it would be really helpful. Unfortunately I don't have a contact for that myself and I just see the clinic as a patient!
Diagnosed June 2021 by professor Hadjivassiliou ,changed my life .
Glad to hear it 😁
Does the test for the ataxia protein work the same way as the one for coeliac? I have had these symptoms and don't want to eat gluten anymore. If I have the test done in a month or so, will it be negative because I've cut gluten out?
Very informative thank you! I think dermatitis herpetiformis is hard for almost anyone to say. 🙂
haha thank you very much, I gave it my best shot :')
Thanks for the video. I measure ttg6 thru Cyrex Labs, I live in the USA. Can you ask Marios if he believes this is a legitimate test for ttg6. Gluten ataxia is not diagnosed in the USA. Thanks. Doyle
Hi, unfortunately that's not the kind of thing that Marios would go into details with me about but it might be worth calling the clinic directly to speak to them?
Do you find onion & garlic are a problem?
Hi, I personally don't have an issue with onion or garlic
I’ve been self diagnosed as having gluten sensitivity for years and only recently found out about gluten ataxia. And now I am kind of concerned that I could have it. For years now, if I get any type of cross contamination my mind immediately gets cloudy and my face burns up like I have a fever. After that I start to become unable to really talk or move that well. And when walking I’ve been told I look drunk. I also feel very drunk and out of it. I’ve even felt pressure building up in my head once after eating a Reese’s cup and when I was walking it felt like I was about to pass out and felt extremely weak for some reason. The problem is that I don’t know how to get tested for this without a blood test, and those would have me going back on a diet of gluten for 6 weeks. Which could be VERY bad if I have gluten ataxia. Not to mention that I’d be bedridden. So my question is do you think I have gluten ataxia and should be extra cautious around gluten? Cause this whole time I thought people with gluten sensitivity and celiac could manifest symptoms like this. Sorry for the long winded comment 😅 and kudos for sharing your story around😁
Hi, gluten ataxia can lead to quite a broad range of symptoms so I can't say for certain whether I think it sounds like you have gluten ataxia, plus I'm not qualified to say whether I think that or not, but you do have a lot of the same symptoms that I had and personally I wouldn't go near any gluten now so that I don't have any further damage
Is Gluten ataxia characterized basically by impaired cerebellar function, which mainly affects balance and walking?
My doctor told me that if my balance is good then he doesn't think it's Gluten Ataxia.
Yes, but in the earlier stages of damage you may appear unaffected most of the time as the brain compensates and masks the effects of the damage. It may be more noticeable when you are tired or run down - you may start to seem unsteady on your feet and slur your words as if you are drunk. Sadly most people only get picked up once major damage is done that is obvious at all times. There are also other areas of the brain that can be affected which cause other clusters of symptoms - these are caused by white matter legions and cause frequent (almost daily) headaches, brain fog etc. There is also gluten caused peripheral neuropathy which causes numbness, tingling, pain, changes in sensation in feet, hands etc. This can also lead to balance issues as someone finds it hard to feel where their feet are. Some great information in this video - a talk by a colleague of the Dr Hadjivassiliou that everyone knows at Sheffield. th-cam.com/video/cPrc5WOpnXU/w-d-xo.htmlsi=_bxd1ZLhGr5cJa-v
It's seems like basically all information on Gluten Ataxia is coming out of Sheffield. I wonder if there's any practice in the US I can turn to about this. My doctor doesn't seem to know much about this (although he's a Celiac expert)
@@SolGoldberg-up3dp I completely agree with you!!! I've got a wide variety of random chronic illnesses I'm trying to figure out. I'm also in the States and there is SUCH a low number of folks here that discuss anything like this. But I have found a TON of disability advocates, educators, and more tied to the UK and their NHS systems!!!