My health anxiety was actually Gluten Ataxia

Christopher Trevelyan
20 Jul 202320:24

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

  • đŸ‘šâ€âš•ïž 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.
  • đŸ„ 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.
  • đŸ„ 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.
  • đŸ„— 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.
  • đŸ’Ș 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.

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Transcripts

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Étiquettes Connexes
Health AnxietyGluten AtaxiaDiagnosis JourneyBalance ProblemsMedical MysteryGluten-Free DietMental HealthRare DiseaseSelf-AdvocacyHealth Recovery
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