My health anxiety was actually Gluten Ataxia

Summary

Chris 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.