Five reasons why it matters you get a medical diagnosis for coeliac disease

I consider myself to be a very lucky coeliac, as the route to my diagnosis was a quick and straightforward one, thanks to the keen eye of my GP. Unfortunately, that’s not the case for many people. It’s been said that in the UK it can take on average 13 years to get a medical diagnosis for coeliac disease. Alarming statistics, considering the crippling and serious health implications undiagnosed coeliac disease can have on so many people.

Coeliac UK recently noted that testing for coeliac disease is slowing. Not great news, as it’s estimated there are there are approximately half a million people in UK unknowingly living with the condition and who have yet to be diagnosed. I personally feel the rising popularity and hype around a ‘gluten free diet’ and how gluten free products are marketed may have partly contributed to the decline in people going down the route of getting tested for coeliac disease.

Concerned about the decline in testing, I’ve been desperate to get this particular post on to highlight five reasons why getting a medical diagnosis for coeliac disease is so important and why if you feel gluten is causing you a problem you push to be tested before you remove gluten from your diet!

1: Coeliac disease requires monitoring and additional vaccinations are recommended should you have the condition

As a diagnosed coeliac, you should attend an ‘annual review’ each year. If you don’t automatically get contacted about this contact your surgery to make an appointment (check out what Coeliac UK reccomend, I also like to refer to the Australian coeliac society too). My annual review simply consists of blood tests at my local surgery, which I book myself in for. Sometimes I have been questioned about my request for the specific coeliac blood test, but I feel this test is important, as when it comes back negative it confirms that my gluten free diet is being 100% effective and no sneaky gluten is getting in there. In-between ‘my review’ I monitor my own weight and health throughout the year and if I have any concerns visit my GP.

In addition, as people with coeliac disease are less able to produce antibodies to fight infections you are advised to have a vaccination against pneumococcal infection (repeat booster every five years), meningitis A,C,W,Y and flu.

Another thing to mention, is I have a bone density scan every 3-5 years. This again is something I request due to being coeliac. There is generally more of a problem with bone density if coeliac disease has been undetected for some time or a gluten free diet has not been well managed, but it’s still a good practice to have one.

2: Undiagnosed coeliac disease can result in more serious health complications

One of the biggest concerns about coeliac disease, is left undetected (or poorly managed – not sticking to a gluten free diet) can result in serious health complications including infertility, osteoporosis, lymphoma and small bowel cancer.

3: It’s not just about you…your family need to be tested/screened too

If you have coeliac disease the chance of another member of your family also having the condition rises to 1 in 10. Therefore, upon your diagnosis they need to be tested too. Forget if they display symptoms or not, I read an article (I’m not sure where!!) that said up to 60% children and 41% adults with coeliac disease do not have symptoms. So yep, the rest of your family need to discover if they have the condition too.

The recommendation for testing other family members would normally apply to grandparents, grandchildren, parents, siblings and children – but I have witnessed on many occasions’ aunties, uncles, niece, nephews and cousins also being affected. In addition, as coeliac disease can materialise at any time, should a test be negative, the test should be repeated periodically.

4: You may not be following a gluten free diet strictly enough to safeguard yourself should you unknowingly have coeliac disease

It’s a known fact that people that have been medically diagnosed with coeliac disease adhere to their gluten free diet more strictly than somebody that has not had a medical diagnosis.

I find it quite scary when I scroll through Instagram/Facebook and spot so many people that are ‘following a gluten free diet’ who say they are not coeliac (I genuinely worry they are though, as many haven’t actually been tested whilst still including sufficient gluten in their diet ) and take chances with unsafe food that clearly contains gluten.

As a diagnosed coeliac a strict gluten free diet is an absolute must to ensure this autoimmune disease doesn’t bite you in the bum (literally!!). And for a diet to be classed as gluten free, (which in the UK is categorised as foods that contains less than 20 parts per million of gluten) anything you eat has to be scrutinized to ensure no pesky gluten is lurking in there.

So, I’m afraid, if you are tucking into chips that have been fried in the same oil that has been used to fry food that contains gluten, you are sharing a butter pot with lots of glutenous crumbs knocking about or toasting your bread in a shared toaster, taking risks on products that have ‘may contain’ or ‘not suitable warnings’ on the pack (these are voluntary declarations that are only applied if there is a genuine risk of the product being affected with cross contamination in the production process) your diet is not completely gluten free.

5: A dietician will be able to offer support to ensure you are managing your gluten free diet effectively

A gluten free diet isn’t just about what you need to take out, but also what foods you need to include within your diet too to ensure it’s still nutritionally balanced. As a diagnosed coeliac you will have access to a dietician who will be able to support you with the dietary changes you need to make. If you don’t automatically get put in touch with a dietician have a natter with your GP to request that you are referred to one.

So yes, all the above are five jolly good reasons why it’s important you get a medical diagnosis for coeliac disease. And I know I have already mentioned this, but it’s important, so I wanted to bring it up again – If you have been previously tested for coeliac and it didn’t show, it doesn’t mean that you are ‘off the hook’ as if you carry the necessary gene required to develop coeliac disease it can materialise at any time (not everyone who has the required gene goes on to develop coeliac disease, in addition, a currently unknown trigger is also needed to make this happen). If some time has gone by since you were last tested and you are getting symptoms (or any of your family have been diagnosed) request for the test to be repeated.

Liz x

Always chat to your GP/Specialist about any health concerns you may have. Never be afraid to ask more questions, repeat appointments or get a second opinion if you feel something isn’t quite right.