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 😕
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?
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
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. ua-cam.com/video/cPrc5WOpnXU/v-deo.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
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 😕
Diagnosed June 2021 by professor Hadjivassiliou ,changed my life .
Thanks for sharing yor story 🙏
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?
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
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 :')
Do you find onion & garlic are a problem?
Hi, I personally don't have an issue with onion or garlic
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. ua-cam.com/video/cPrc5WOpnXU/v-deo.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!!!