Coeliac tests in Boots – good or bad thing?

Coeliac tests in Boots – good or bad thing?

I was recently alerted to a blood test for coeliac disease which you can now purchase in Boots. I wasn’t sure how I felt about this and had an interesting discussion with friends on social media about the pros and cons of this development.

  1. I was perusing Facebook when I noticed something interesting from one of the Coeliac groups I’m a member of:
  2. According to the item description this product is “a rapid and reliable home test for the detection of celiac disease from a fingertip blood sample”. Most of us with coeliac disease had a test very similar (if not the same) as this at our GPs, usually followed by an endoscopy. If you’re interested, you can read about my diagnosis story which I shared as part of Coeliac UK’s Awareness Week this year:
  3. So, this test from Boots, which you can currently buy for just over £20, claims to be able to detect celiac disease (American spelling). My initial thoughts were mixed, so I thought I’d mention it on social media and see what others thought. Sadly, some of these discussions were with users who have protected Twitter accounts so I’m unfortunately not able to share those tweets though I will provide a summary of the discussion.
  4. Interesting, you can buy a coeliac testing kit in Boots (maybe useful if considering asking GP for tests) bit.ly/12lHyGF #glutenfree
  5. @JuniperJungle I’m not sure how I feel about it. On one hand means more people might say they’re coeliac when they’re not (bad) but…
  6. @JuniperJungle …on the other hand it may give people confidence to get diagnosed (good) and raise awareness (good)
  7. @joeyanne But if people get a positive test will they then bother to go to the gp? Think it could lead to self-diagnosis more.
  8. Self diagnosis is clearly a key concern from a product like this. According to Coeliac UK, around 1 in 100 people have coeliac disease but only 10-15% are diagnosed, which means there’s a whole lot of people undiagnosed. One friend (has a coeliac Mum) raised concerns that things like this may raise the number of people claiming to have food allergies/intolerances/autoimmune diseases without being properly tested. If people take this test and get a positive result, will they just assume they have coeliac disease or will they get a verified diagnosis? One person, who is the husband of a pharmacist commented that he was really uncomfortable with anything that encourages self diagnosis, which I agree with. But could it also lead to an increase in verified diagnosis if people get a positive result and are then encouraged to get properly tested?
  9. @ijclark @JuniperJungle agree, this was my first point. However could also lead to increase of verified diagnosis which is a good thing
  10. @joeyanne @ijclark Increased verified diagnosis can only be a good thing, will be interesting to see what happens from this.
  11. Someone else asked a question which raised another concern:
  12. @joeyanne Interesting indeed. Will it work even if you’ve stopped eating gluten do you know? I was never brave enough to go to GP.
  13. I’m not sure of the answer to this but I suspect it’s the same as with other coeliac tests in which case the answer would be no – there’s some useful information from Coeliac UK on this:
  14. This leads to another concern. If people already suspect they may have coeliac disease, and have therefore adopted a gluten free diet, this test will presumably then show a false negative which isn’t going to be helpful at all. There’s not much information on the Boots product page, but I would hope that issues such as this are addressed in the guidance with the product.
  15. So clearly there are some issues. But then to consider the potential good points. I do think it could give some people the confidence to raise it with their GP and ask to be tested to see if they can get a verified diagnosis. Whether or not this will be a large number of people, I’m not sure.
  16. The other positive I see is that having things like this helps to raise awareness of the condition. Purely by having this on the Boots shelves, and some people buying it and likely discussing it with friends/family/colleagues, this could lead to increased awareness of coeliac disease which is most definitely a good thing. I’m intrigued by the fact that this product is clearly not from the UK (due to the spelling of celiac) and wonder if there is anything similar in production/development from UK. I also wonder if Coeliac UK are aware of this and what their views are.
  17. What do you think? Is it good to have things like this available or do you think it could lead to more self diagnosis and less people getting verified diagnosis?

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5 comments on “Coeliac tests in Boots – good or bad thing?

  1. Alex Gazzola says:

    Coeliac diagnosis is not clear-cut and that’s why I have concerns about the availability of this product, although I agree that there are some positives – which have already been made in the post. Problem is that the test has 90-something % accuracy, which could lead to some people receiving false reassurance or false positive diagnosis. You need to see a GP for an ‘official’ diagnosis anyway – which will get you prescription GF food – so I still remain unconvinced, despite the positives. There are just too many ‘complicating’ factors – that you need to be eating gluten, that you could be IgA deficient, that it’s not 100% …. And what if you get a false positive but it’s some other GI disease? Risks a delay in diagnosis. Guess it could be useful in convincing a reluctant-to-test GP, though – but do GPs routinely refuse CD test to those concerned about it?

    Sorry – some random thoughts. Must think some more as my views aren’t quite set yet!

    Alex Gazzola

  2. Katherine M says:

    I’ve come across GPs who are reluctant to test. I actually had a test years ago which was negative – but I didn’t know that you’re supposed to return to eating wheat before the test. I visited a GP to suggest another test but she told me to go away – “everyone gets stomach upsets sometimes”. That was years ago. When I avoid wheat, my symptoms seem to improve. My partner wants me to visit the GP again but I don’t want to be patronised again – I know it sounds like a small thing but I found it upsetting. So I’m considering just buying the test online, so at least I’ll know whether I need to cut out all traces of gluten or not. A GP would have no further treatments to add, and I wouldn’t get gluten-free food on prescription anyway (too expensive) so what’s the point in going to the GP?

    • Jo Alcock says:

      Sorry to hear you’ve had such a negative experience with your GP, Katherine. I completely understand about not wanting to be patronised, it does put you off going to them for help. When I last saw a doctor (for a totally unrelated issue) he asked if I was getting on OK with my “funny food” – it certainly didn’t warm me to discussing coeliac disease with him!

      For me the value of being diagnosed is that I now know that’s what the problem is and can get on with dealing with it. I felt a huge sense of relief when I was diagnosed as I knew the way to stop my problems. Having it on my medical record also means I can get support for it if required (e.g. dietician appointments, check up for related conditions), and hopefully gluten free food if I was in hospital for any reason. I also choose to get food on prescription as I find I get better quality products and if I use my full allowance it works out much cheaper than supermarkets (I rarely use my full allowance at the moment, but I could if I changed my diet choices), though I appreciate we’re all different and you may not wish to get food on prescription.

      One point to be aware of is that it’s likely these tests will also require you to be on a diet which includes gluten – if you’re coeliac and on a gluten-free diet I believe it would show negative (I may be wrong on this – worth checking though).

  3. bd says:

    To settle at least one concern, there are not false positives. That is incredibly rare. I talked with Rexall and there can be false negatives because of antibody deficiency that occurs in less than 3% of celiac patients. The kit is identical to the blood test used by doctors, it is in fact only a home version of the same test. These kits are provided to medical offices with the only difference being that the pro version includes a total antibody test as well. This information is available on the Rexall website, fyi for future visitors to this blog. This is not going to encourage people to self diagnose, the blood test is more accurate than an intestinal biopsy which often misses celiac despite the common misconception that it’s a definitive confirmation. A biopsy can only confirm a diagnosis if it is taken in the right location and it will not help someone who doesn’t already have much villi damage whereas a blood test can diagnose before extensive damage.

    • Jo Alcock says:

      Thanks for the further information. The thing I’m not sure of is that if someone is already following a gluten free diet, will the blood test still show a positive if they have coeliac disease? I’m aware that (according to Coeliac UK) for medical testing you need to not be following a gluten free diet in order for it to be effectively diagnosed.

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