My health anxiety was actually Gluten Ataxia
Summary
TLDRChris Trevelyn, a liver cancer researcher at Leeds University, shares his personal journey with gluten ataxia, a rare neurological disorder. Initially misdiagnosed with health anxiety, Chris experienced a range of symptoms including dizziness, balance issues, and anxiety. After numerous doctor visits and tests, he was correctly diagnosed with gluten ataxia. He discusses the importance of a strict gluten-free diet for treatment and encourages others with similar symptoms to advocate for themselves and seek a proper diagnosis.
Takeaways
- 👨⚕️ Chris Trevelyn, a liver cancer researcher at Leeds University, shares his personal journey with gluten ataxia, a rare neurological disorder.
- 🌀 Chris initially experienced symptoms such as chronic ear pain, slight hearing loss, and a sensation of falling, which he initially attributed to health anxiety.
- 🏥 Despite multiple doctor visits and tests, including negative celiac tests and an MRI, Chris struggled to get a diagnosis, with many attributing his symptoms to anxiety.
- 🔍 Chris's health anxiety was exacerbated by the lack of a definitive diagnosis, leading him to research extensively and self-diagnose with various serious conditions.
- 🏠 His condition worsened to the point where he was nearly housebound, unable to work, and experiencing severe depression and anxiety.
- 👂 After consulting an ear specialist and undergoing surgery for a suspected ear issue, Chris still experienced no improvement in his balance problems.
- 🏥 A referral to a specialist at Royal Hallamshire Hospital led to the discovery that gluten sensitivity could be causing his symptoms, despite negative celiac tests.
- 🌟 Gluten ataxia was confirmed through blood tests and a specialized brain MRI, providing Chris with a long-awaited diagnosis.
- 🥗 The only treatment for gluten ataxia is a strict gluten-free diet, which Chris adopted in hopes of reversing the neurological damage caused by gluten.
- ⏳ After a year on a strict gluten-free diet, Chris began to see improvements in his balance and was able to return to a more normal life, including running and working full-time.
- 💪 Chris encourages others with similar symptoms to advocate for themselves and seek a diagnosis, as gluten ataxia can be treated and managed with the right approach.
Q & A
What is the main topic of Chris Trevelyan's video?
-The main topic of Chris Trevelyan's video is his personal journey with gluten ataxia, which he initially mistook for health anxiety.
What were some of the initial symptoms Chris experienced?
-Chris initially experienced chronic ear pain, slight hearing loss, a sensation of falling, and general anxiety without a clear cause.
What was the initial diagnosis Chris received from his GP?
-Chris was initially diagnosed with viral labyrinthitis by his GP, who believed the symptoms would subside within two weeks.
How did Chris's symptoms progress over time?
-Over time, Chris's symptoms progressed to include intense dizziness, especially in environments with bright lights and flat floors, and he felt like he was moving on a boat.
What was Chris's reaction to the lack of improvement after two weeks?
-Chris became increasingly anxious and panicked as his symptoms did not improve after two weeks, leading him to research and self-diagnose with various serious conditions.
What steps did Chris take to cope with his health anxiety?
-Chris sought help from a hypnotherapist and watched videos on health anxiety to try and lower his stress levels and cope with his symptoms.
What was the turning point in Chris's journey towards a diagnosis?
-The turning point was when a specialist at a private balance clinic in Sheffield suggested that gluten sensitivity could be causing his balance problems.
What is gluten ataxia and how is it related to gluten?
-Gluten ataxia is a rare condition where the body produces antibodies in response to gluten, which can attack the cerebellum and cause balance and coordination problems.
What was the treatment prescribed for Chris's gluten ataxia?
-The treatment prescribed for Chris was a strict gluten-free diet to avoid any gluten ingestion, which could potentially reverse the damage caused by gluten.
How long did it take for Chris to notice improvements after starting the gluten-free diet?
-Chris noticed improvements in his balance problems after about a year of strictly adhering to a gluten-free diet.
What advice does Chris have for others experiencing similar symptoms?
-Chris advises others to be advocates for themselves, not to give up on seeking a diagnosis, and to consider getting an MRI scan to rule out serious conditions.
Outlines
👨⚕️ Journey with Gluten Ataxia and Health Anxiety
Chris Trevelyn, a liver cancer researcher, shares his personal journey with gluten ataxia, which initially manifested as health anxiety. He discusses the onset of symptoms in 2019, including chronic ear pain, slight hearing loss, and a sensation of falling. His anxiety escalated with persistent dizziness, especially in supermarkets with bright lights and flat floors. Despite an initial diagnosis of viral labyrinthitis, his symptoms worsened, leading to health anxiety and irritability. Chris's health journey involved battling with different doctors and seeking a diagnosis, which was a challenge due to the rarity of gluten ataxia and its misinterpretation as stress or anxiety.
🏥 Struggling with Health Anxiety and Misdiagnosis
Chris's health issues progressed, with his condition deteriorating to the point of near housebound due to depression and anxiety. He was convinced he had various neurological diseases, including a brain tumor or early onset Parkinson's, leading to extreme health anxiety. His symptoms continued to worsen, affecting his daily life and work. Despite an ambulance visit and multiple doctor consultations, he was misdiagnosed with anxiety. His health anxiety was so severe that he was constantly researching his symptoms online, leading to self-diagnosis of various conditions. His family encouraged him to take a break, which helped reduce his stress levels. He also explored coping mechanisms, including watching videos on health anxiety, which provided some relief.
🔍 Pursuing a Diagnosis and Dealing with Health Anxiety
Chris's relentless pursuit of a correct diagnosis led him to consult specialists and undergo various tests, including an MRI and ear examinations, all of which showed no abnormalities. He was convinced he had a rare ear condition and underwent surgery, which did not alleviate his symptoms. His health anxiety was so intense that it affected his mental state, leading him to feel that his life was over. From February 2019 to winter 2020, he saw numerous specialists without success until he visited a private balance clinic in Sheffield, which suggested gluten sensitivity as a potential cause for his balance issues.
🌟 Gluten Ataxia Diagnosis and Treatment
Chris's journey led him to Professor Marios Hajivassiliou, an expert in gluten ataxia, a rare condition where the body produces antibodies in response to gluten, attacking the cerebellum and causing balance and other neurological issues. After blood tests and a specialized brain MRI, Chris was diagnosed with gluten ataxia. The relief of finally having a diagnosis was immense, especially after being dismissed by previous doctors. The treatment involves a strict gluten-free diet to prevent further damage and potentially reverse existing symptoms. Chris emphasizes the importance of advocacy and persistence in seeking a correct diagnosis.
🍽️ Embracing a Gluten-Free Lifestyle for Recovery
Following his diagnosis, Chris adopted a strict gluten-free diet as the sole treatment for gluten ataxia. Although the improvements were slow, he eventually noticed a reversal of his balance problems. He now leads a normal life, working full-time, running regularly, and living independently. Chris encourages those with similar symptoms to advocate for themselves and not give up on finding an underlying cause for their health issues. He also highlights the importance of stress management in diagnosing and treating health conditions, and he offers support to others through his experiences by creating videos and engaging with his audience.
Mindmap
Keywords
💡Gluten Ataxia
💡Health Anxiety
💡Viral Labyrinthitis
💡Dizziness
💡Balance Problems
💡Celiac Disease
💡Gluten Sensitivity
💡MRI Scan with Spectroscopy
💡Strict Gluten-Free Diet
💡Self-Advocacy
💡Mild Embarkment Syndrome
Highlights
Chris Trevelyn, a liver cancer researcher at Leeds University, shares his personal journey with gluten ataxia.
Initially, Chris experienced health anxiety, which he mistook for the onset of gluten ataxia symptoms.
His symptoms began with chronic ear pain and slight hearing loss in February 2019.
Chris described feeling a sensation of falling and increased anxiety without a clear cause.
Intense dizziness, especially in shops with certain lighting and flooring, became a significant issue.
His GP diagnosed him with viral labyrinthitis, expecting symptoms to subside within two weeks.
Despite the expected recovery period, Chris's health anxiety grew as his symptoms persisted.
Chris's health anxiety led him to research and self-diagnose with various severe conditions.
His symptoms worsened to the point of near housebound status with depression and anxiety.
Chris's workplace called an ambulance due to his panic attacks and balance issues at work.
A specialist in Cambridge ruled out an ear infection and brain issues through scans and an MRI.
Chris underwent surgery for a potential ear condition without improvement in his symptoms.
He explored the possibility of mild embarkment syndrome as a cause for his balance issues.
Chris's search for a diagnosis continued until a specialist at a private balance clinic in Sheffield suggested gluten sensitivity.
Gluten ataxia was confirmed through blood tests and an MRI scan with spectroscopy.
The only treatment for gluten ataxia is a strict gluten-free diet to prevent further damage.
Chris advocates for self-advocacy and pursuing a diagnosis despite initial setbacks and misdiagnoses.
After a year on a gluten-free diet, Chris began to see improvements in his balance and overall quality of life.
Chris now leads a normal life, working full-time and engaging in regular physical activity, in contrast to his previous state.
He emphasizes the importance of stress management in identifying the true cause of health issues.
Chris encourages those with similar symptoms to seek a diagnosis and not to dismiss health anxiety.
Transcripts
hi my name is Chris trevelyn I'm a
researcher in liver cancer at Leeds
University and I'm just making this
video to talk about uh my journey with
gluten Ataxia how it started out as
health anxiety or what I thought was
just health anxiety
um and basically the entire journey I
went through from developing symptoms
first of all
um battling with different doctors and
looking to get diagnosis and then
eventually getting a diagnosis and the
treatment for glutenant toxia and some
of the symptoms which I experience
and so to start with
um I was always in good health
um never had any health problems at all
very active uh I was uh 20
um well I've been 25 years old uh when I
first started having symptoms so I was
in February of 2019.
um everything was fine and then one week
I started to experience some very weird
symptoms along the line serve
um ear pain so I had very chronic ear
pain especially one night and was
arriving in agony with the amount of ear
ache that I had
um I had some slight hearing loss
um but nothing too major just like sort
of sounded like I was uh listening
through through a shell sort of hearing
loss
um I also had
um a couple of times where I felt like I
was uh dropping when when just sitting
on the edge of the bed just a sensation
of sort of like falling through a lift
type of sensation
and then generally just feeling very
very anxious uh but not knowing why I
felt anxious and just um sort of very
irritable very quick to to snap that
kind of thing
um so this all started to like
creep on during one of the course of one
week so I was able to function
completely fine didn't have any business
didn't have any balance problems at this
point
and then towards the end of the week I
started to get uh intense dizziness uh
one Saturday night
um and then the next day I was feeling
very dizzy when in a shop
um especially caused by sort of uh
shelves in the shop upon each side a
bright fluorescent lights and flat
floors in the shop
um and that caused a great deal of
anxiety so from that point on I was
feeling basically dizzy almost 24 7.
um but not just spinning dizziness it
was more so the sensation of feeling
like I was moving
um sensation of feeling like I was
moving on a boat especially uh like
feeling like when I was walking it felt
like a lift going up and down
um it was horrendous
um it was very upsetting uh very
confusing
um panic I was greatly panicked
um but I was briefly uh felt sort of uh
a bit more encouraged when reading about
how this could be caused by an ear
infection so everything's that was
matching up the fact that I had the ear
pain
um and the knee infection
um and so I went to go see um GP
um who diagnosed me with viral
labyrinthitis
um said that this would subside within
about two weeks so I everything was good
yep my family very encouraged by
hearings as well but in the back of my
mind I was worried what if this doesn't
go I was always prone to health anxiety
in the past
so any time where I might feel like a
symptoms coming on
um I'd be worried about what that
actually means and whether it's going to
subside or not so I was waiting across
this this two-week time period where I
was still experiencing all the balance
problems
and then after two weeks it didn't go
slightly increase my anxiety I was I was
panicked all the time I was constantly
Googling as to what that might mean like
constantly like
all the everyday couldn't function all
day at work I was Googling and
researching symptoms I was look I was
reading forums
I was reading medical reports I became
convinced that it was all manner of
different diseases and when one was
ruled out then I would move on to the
next one I was Finding
patient uh sort of testimonials and
patient forums where they would talk
about the exact symptoms I had and then
I was convinced that I would have for
example like um a brain tumor or blood
cancer or you name it I I was convinced
I had it I was convinced that the
European was due to a tumor behind the
ear that was causing
uh pressure there
but it was quite uh convinced that I had
a early onset Parkinson's disease
um
any anything neurological I I was
convinced that I had it
um so it didn't help that during all
this time my symptoms were just getting
worse and worse so I went from being a
healthy functioning 25 year old who
exercised a lot did a lot of running did
a lot of walking never had it you know
with slight Tendencies to health anxiety
but only ever since like otherwise
completely fine completely normal
completely healthy now I was essentially
nearly house bound with depression
anxiety couldn't sleep completely
obsessed with Googling
awful essentially
[Applause]
um
and then the symptoms were just getting
worse and worse at one point where I was
at work one day and I just couldn't take
it anymore I was in the toilets with we
were getting a flat floor which we
always made the symptoms worse
spinning and I just couldn't take it
anymore and
um I was just panicked and my workplace
ended up calling for an ambulance so I
got an ambulance
um to hospital but as it was a
non-emergency case I was waiting there
to see a GP
GP just said to me you you basically
just got anxiety here can hear complete
panic in your voice because every you
come you panic about every single
symptom under the sun which I was
um for example I was even convinced that
I had some kind of ongoing infection
that was causing all of this and the
color of my tongue was different to
before and that was a sign that I had an
infection
but again I was just attached onto
anything anything could be the reason
why I was connecting all manner of
different dots together and coming up
with the most awful of of diagnosis and
diagnosing myself but I wouldn't listen
to anyone at this point I wouldn't hear
what anyone was saying I was convinced
that I was going to die
um so my parents
um said you know come home because I was
working away at the time said come home
for two weeks
your law anxiety setting do you know
getting stress down
and because of where I was at that time
I was just depressing anxious I'm living
on my own it just wasn't good for my
health at all
so I go home that helped subside a lot
of the of the stress and I came across
on YouTube
um health anxiety
so watching videos on health anxiety
really really really did help lower the
stress levels because I was seeing a lot
of the symptoms that I was experiencing
being reported by other people
um and that helped me to think okay well
it's not it doesn't it's not definitely
a brain tumor it could just be health
anxiety
um and I'll just give this a go of
believing and telling myself it's health
anxiety it's health anxiety just
repeating it to myself anytime they came
on just saying it's health anxiety
um but eventually
this didn't this copy mechanism wasn't
enough
um and the firm time A friend of mine I
was in at that point I was just
basically looking for anything any new
coping mechanism would work for a couple
of days and then I was convinced again
that it was a brain tumor
um I then went to a hypnotherapist to
try and help with this to try and stop
me out of focusing on the symptoms again
this worked for a few days but the fact
that the symptoms remained was still
um was still the overriding issue with a
lot of people with health anxiety there
is symptoms will eventually go when the
anxiety level drops but mine wasn't good
so I pursued with the doctors
um to follow down the ear route
um I then
um believed that perhaps this ear
infection that I had originally in the
ear pain and had caused damage to my
balance uh Center
um so I fortunately with the workplace I
was at went and saw Primal private
medical
um Insurance
um and so I went to go see an ear
specialist in Cambridge
um I had scans done and I convinced them
to allow me to have an MRI scan of my
brain as well because I was convinced
that there was a problem there
um and essentially the problems came
back showing that there was no problems
with my brain
um and there was no problems my ears as
well
um I then became convinced that I had a
rare problem with my ear
um which I can't remember at the top of
my name but uh off the top of my head
but it's essentially where you get a
small hole in your ear and that can
cause uh pressure differences that could
cause balance problems
um so I underwent a surgery and an
operation to fill a potential small hole
which couldn't be seen
uh again didn't make a difference at all
so I'm going through some quite Extreme
Measures at this point didn't make a
difference at all to my balance problems
my balance problems were still there
um I then became convinced that I
developed
um a condition called
mdds which stands for mild embarkment
syndrome which occurs after somebody uh
disembarks um a stressful or just
basically any kind of voyage it can
occur after a cruise or after a trade
after a plane ride and it can leave
people feeling those symptoms
um basically uh forever
um and this can be caused by stress as
well so it can because when you don't
have transportation so I become
convinced I've got this lifelong
balanced condition called mild abutment
syndrome it's never going to go my life
is nothing depressed what's the point in
living anymore
uh starting to feel slightly on the edge
of what is the point in life anymore if
I've gone from being 25 years old can do
whatever I want I'm happy I can do
whatever I've got the world in front of
me to this point where I felt like I was
just held through and bedridden my life
is over there's nothing worth living for
um
so what happened was from February 2019
to
um talking uh the winter time of uh
2020. I'm just seeing specialist after
specialist after specialist after
specialist searching for diagnosis and
not getting anywhere
and then eventually
um I paid to go to a private balance
clinic in Sheffield which wasn't far
from where I live in Bradford
and the point of that was just to try
and get some physiotherapy exercises to
help with the balance problems
um so during this time I was doing a PhD
um in science in cardiovascular disease
and because I still I didn't want it to
rub me of my life so I was continuing to
function and work and try and achieve my
goals but I was just feeling completely
just depressed and just sad all the time
because all of this these balances were
just occurring in my brain these
Sensations were always there all the
time and it just felt sad knowing that
other people weren't experienced them
and I had to experience them and it was
just so depressing so I went to this
balance Clinic just to try and get some
exercises to help with the sensations
and whilst I was there The Specialist
happened to ask me whether or not and
I'd suffered from many uh gluten
sensitivity with my stomach
um
the uh this was uh the case so I've
always had some problems uh slight
problems with my stomach uh with when
eating gluten and but I'd never got a
positive uh Celiac test so I've done a
Celiac test like four times and all of
them were negative
um he said that gluten could be the
cause of my balance problems
um and it wouldn't matter whether I had
celiac disease or not
um so he referred me to go and see a
specialist
um at Royal
um hallamshire Hospital in Sheffield
um called Professor Marios hajjovisulu
who's an expert in a disease called
glutenant ataxia
essentially gluten Ataxia um is a
disease where the spot the body responds
to the ingestion of gluten by producing
antibodies and but these antibodies can
become what they call Auto antibodies so
it means that they can attack
um parts of the cerebellum in the brain
and lead to balance problems and
dizziness and it can also cause speech
problems and coordination problems and
memory problems as well
and so I waited for this uh first
appointment uh spoken through my
symptoms
and he arranged for me to have a blood
test done and also for a special MRI
scan of my brain called an MRI scan with
spectroscopy and essentially this this
kind of scan measures uh chemical
changes across the brain and it can see
where some cells may not be present
anymore because they've been damaged or
or those cells have died due to attacks
from different antibodies
so I waited the results of both my blood
test and my burnt scan
um and around July or August of 2020 I
received a letter to confirm that I had
tested positive for glutenantaxia both
through the blood test and I'm through
the brain scan
so this was a massively massively
relieving uh time for me I'd finally
reached a diagnosis and all the doctors
that told me that it was just stress uh
just anxiety and nothing more
um were wrong
um I don't blame them because it's a
very very rare condition but it just
felt like such a relief that I pursued
it and advocated for myself and and
chased on diagnoses and I finally got a
diagnosis
um so the treatment was laid out to me
there was that there is only one
treatment for gluten Ataxia and that is
a strict
um
um
gluten-free diet you can't have any
gluten whatsoever and that's to avoid
cross-contamination as well so it means
that like for example you can't toast
bread in the same toast that has been
used for normal bread as well you have
to be extremely strict to not ingest
um any gluten at all
um and that with with doing this you can
potentially reverse any damage that the
gluten has caused
so it's really important to notice it it
depends on how long you've been this
damage has been caused so some people
are very unfortunate and not looking
that it takes them a long time to get a
diagnosis or they'll listen to doctors
who tell them that it is just stress and
anxiety and they give up looking for a
diagnosis and all the time they'd be
eating this gluten which is causing
damage to their brain and potentially
gets to a point where it's not
reversible anymore so I was told that
with eating extra gluten-free diet
there's no reason why I couldn't reverse
this damage
so that's what I started doing I went
completely strict gluten-free
um but a year later
um still didn't feel like I was seeing
any results
um so I still like slightly looking
online at different all the different
chords it could be
um the health health anxiety was still
slightly there still slightly depressed
I'm still getting balance problems
um especially when after Transportation
so that's always something that would
make it worse is going on a
transportation like bolts or like trains
or looking at screens for a long period
of time so it definitely affected all of
my balance Center
but I proceeded with a gluten-free diet
and then after a year or so I started to
see the improvements so I started to
to see the balance problems reversing
and to the point where I'm at now where
I still
will experience slight balance issues
like I'm not gonna lie I still get
things
um but there's so many school that like
I can so easily deal with them like I
run regularly at the moment like I'm I
I'll run like a few times a week like
eight years seven kids five kids like
um I I work a full-time job commute via
train and walking I live a very normal
life I I own my own home I'm a research
fellow at a university I can do so much
with my life now whereas before I just
felt like just I cut out my life was
basically at an end and that was only
possible through
um completely eliminating gluten so it's
just
feels like a different world now to
where I was at before where I was
undergoing cognitive behavioral therapy
and taking antidepressants just to kind
of cope with these symptoms that had no
answer to them because I was being told
by every doctor that I saw that I just
had anxiety it was just stressing that
there was nothing more but because I
looked out for myself and I pursued it
to the end I finally got a diagnosis and
a rare diagnosis at that so I would say
to anyone who's got the same kind of
symptoms as what I had uh balance
problems feeling like everything is
swaying and moving
um that kind of thing to just
can't like just really be an advocate
for yourself don't give up because it
might not be that it is stress and it
might be that there is something
underlying there and that you can
undergo some treatment for it
um and that's it not not to say that
there is such a thing as health anxiety
because there is and people will help
anxiety do experience dizziness and
balance problems as well but it's
important to get the stress down uh get
the stress levels down so that you can
actually work out what it is that could
be causing it and that's the main thing
like everyone would say that to me back
then get the stress down get the stress
down then we can work it out but I
wouldn't listen to them because
you're convinced that you're dying
you're convinced that you've got some
horrible illness
but the main thing is
if you get the scans like an MRI like a
brain scan they just completely set your
mind at ease and you'll know that it's
absolutely nothing extremely serious at
that point then you can go on and see if
it's something like glutenantaxia
um so if you found found this video
useful Please Subscribe because I'll do
more videos in the future talking about
my symptoms and talking about the kind
of things that have helped and please
like and comment on the video
um if you want to ask me any questions
or I'll reply in the comments um it was
so useful for me back then to to look on
YouTube and find people talking about
this kind of thing so anything that I
can do to help anyone
um going through the exact same things
that I went through
um it would make that it would mean the
world to me
um to to help people like yourselves so
yes please um subscribe and comment um
and I'll answer any questions you've got
um I've been Chris uh thanks for
watching
um and stay tuned for more videos
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