Richmond and Kingston
ME Group
Richmond and Kingston
ME Group
Richmond and Kingston
ME Group
Richmond and Kingston
ME Group
Richmond, Kingston &
West London M.E. Group
Aiming to reduce M.E.'s impact on our lives
R&K member Will was misdiagnosed
- the right blood test revealed Coeliac Disease
Most people with ME dream of discovering they've been misdiagnosed & that they actually have a treatable condition. Misdiagnosis may be more common than we realise though – as one of our young adult members (we’ll call him Will) found out. Will says:
Hopefully this might help someone else. It might be worth double checking any conditions that have previously been ruled out,
in case there was an error!
Towards the end of primary school I had a fatigue crash, along with many typical Coeliac symptoms, and took 6 months off school. There was little-to-no testing and help from the doctors, and what there was concluded once I returned to school, since the rest had been enough for my energy to recover.
At university I had an absolute nightmare in regard to the doctors, in trying to get ADHD/autism referrals, lost blood test results, not notifying me of assessment dates, saying they'd medicate my ADHD once diagnosed (they did not). I consistently had a folate deficiency and elevated liver enzymes, which were ignored on the whole, besides the suggestion to take a folic acid supplement, which only narrowly brought me into the normal range.
My ME/CFS diagnosis was done privately in the end, a whole 2 years after I started asking the doctors for help.
After graduating, Will returned to his parent’s home.
​I changed doctor and since it takes forever for medical records to transfer, he assumed that my ME diagnosis meant other things had been ruled out. However, due to a denied PIP claim, we decided to go ahead and have a referral to the local ME clinic in Sutton.
As part of the referral process the clinic asked Will’s doctor to provide a full set of blood tests to ensure alternative reasons for his illness had been excluded. Will never got to the clinic - the tests revealed he has Coeliac Disease. He had been poisoning his body by eating food containing gluten.
So my M.E. diagnosis I suppose was also done incorrectly as Coeliac hadn't been properly ruled out. According to my medical notes, ever since a first negative result in testing for Coeliac back in May 2022 the doctors deemed a re-test unnecessary whenever I subsequently asked it to be checked again. So the rheumatologist who diagnosed me with ME/CFS did so on an outdated and unchecked Coeliac blood test.
So there's actually been quite a disaster from the professionals. However, how little I was listened to helped me work hard to figure out what was wrong myself, which has led to great growth for me as a whole.
I'm not entirely certain how I feel about the news, as I'm sure that many of us hope that we can find a physical cause, but
this could have been avoided.
I’ve been on a gluten free diet since 9th April and I saw improvement immediately 🙂
I've been good at checking everything I make, and when I go out to eat. At the beginning of cutting out gluten I had a massive jump in energy and ability to actually respond to rest, instead of just getting more tired. I'm continuing to improve - I'm definitely WAY more capable now than I was before, but also it will take a long time for my organs to recover.
Late July Update:
​Current news is I've recovered GREATLY, way more energy and it's looking possible to be recovered in time to start a job that's lined up for January. I went away with friends over the weekend and actually had the MOST energy out of them all - albeit they were a bit reckless with how little sleep they were getting! Whilst I do feel pretty tired today as a result, it's nothing like the fatigue I used to experience. My other Coeliac related symptoms are all improving greatly too (symptoms I'd been suffering with my whole life, long before I would ever crash with fatigue).
I really want to stress how important it was for me to find a doctor who finally listened to me and actually tried to figure out what was wrong - which took many attempts, trying out multiple different GP surgeries and multiple doctors within them.