The cost of being diagnosed as coeliac?

GF travelling in San Telmo, Buenos Aires

Recently I’ve been speaking to gluten free travellers from around the world. Some of these people have known they are coeliac for many years, others have been fairly recently diagnosed like myself and a number know that gluten affects them negatively but have not yet discovered the full reason for this.

Whether you were diagnosed many years ago, last month or are currently going through the process of finding out what’s causing all of your unpleasant symptoms, numerous visits to your doctor/hospital will no doubt be involved. Discovering what’s been causing all of your discomfort and pain for months or possibly even years and being provided with a solution to stop it all is priceless but what is the financial cost of being diagnosed with coeliac disease?

Being from the UK we have the NHS so all of my tests and procedures were ‘free’ but I’ve heard of people going private in the UK in attempts to get a quicker diagnosis. I’ve even heard from some people in the US who know they have some sort of reaction to gluten but are considering just keeping to a gluten free diet rather than paying for a diagnosis (blood tests, consultancies, biopsy, etc) The symptoms for coeliac disease are so varying that it’s difficult to pinpoint unless you are tested but this can’t happen unless you choose to visit your doctor. I know that personally I would have been less in a hurry to visit the hospital as many times as I did during my period of diagnosis if I was billed after each visit. I probably would have at least waited longer before seeking help…until my symptoms became even worse.

Anyone on a gluten free diet will tell you that specially made gluten free products are more expensive than ordinary products but what I want to focus on comes even before any of this. It comes from the first time you sit down with your doctor and tell her that you just don’t feel like yourself and continues with various blood tests, a scan, biopsy and who knows what else in the search to discover what’s wrong. What financial price did you pay to discover you were coeliac? Are high costs preventing you from getting officially diagnosed? If you are from a country where healthcare is free, do you think you would have gone for advice as soon as you did if it wasn’t free?

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  • I’m from the UK. I ended up going private. I’d been ill for about a year with what my GP insisted was just puberty related problems.

    So I switched GPs, and went private to speed up all the tests. It cost my mum a fortune.

    I don’t remember much because I was diagnosed with ME as well. Being diagnosed as a coeliac (or at least it coming up in the blood tests) was a bit of a fluke.

    I went NHS for the biopsy though. My mum’s not made of money.

  • Thanks for this post. I’m getting tested for Coeliac tomorrow morning, and having had to eat wheat etc over the last wee while, I am in sheer agony. Not sure when I’ll be able to sleep. It will also be interesting to see how this will impact on my travels.

  • @Toni. Interesting to hear that your GP thought you had puberty related problems. A few doctors thought my problems were nothing serious for a while too until I kept returning as I knew there was something sinister going on and I needed to know what it was!
    @Nick, I’d be interested to hear if your coeliac tests come back positive. Even if they do, travelling may be more challenging but easily done if you are prepared for it as you can see from my blog 🙂 Sorry to hear you are in so much pain. Good luck with it all 🙂

  • Undiagnosed

    Mar 2nd, 2012

    I haven’t been tested with the ‘big’ tests yet because [cost aside] they’d force me to eat gluten for a whole month. No thank you!

    But I will be testing for Duhring’s disease (which is very similar to Celiac) if I can as it only seems to need a small skin sample.