Essential facts & stats for coeliacs

Has the new year made you want to scream a few things about being gluten-free? I know it has for me. And what better time than to put the record straight with people who know diddly-squat about gluten? Here are some essential facts and stats about coeliac disease that it's important to be aware of.

And that statistic is pretty much universal. So no matter where you live, roughly 1% of the population have coeliac disease. That figure is sometimes more in countries like Italy but it's possibly because they test all children for coeliac disease. Yes, ALL children! If only they'd do that here in the UK (*wishes*).

Which brings me neatly to the fact that roughly two thirds of coeliacs are undiagnosed. That means nearly half a million people in the UK are walking around wondering why they feel so rubbish/easily break bones/have odd symptoms that can't be explained. Coeliac disease has many different ways of presenting itself, which is why it's so important we do more blood tests. Like the Italians.

One of the most heartbreaking/shocking statistics for coeliac disease is that it takes (on average) 13 years to diagnose. And if you have crippling symptoms like mine you'll know that it's no joke. Thankfully, our GP system is getting better at putting people in for blood tests, but there's still a long way to go. Remember: if you or someone close to you has unexplained abdominal pain, mouth ulcers, infertility, bloating, brain fog, anaemia or one of the many other symptoms associated with coeliac disease, make sure their GP does a blood test.

And if you're one of the 'lucky' coeliacs who doesn't get symptoms (known as a 'silent coeliac') then don't think you escape the long-term problems associated with coeliac disease. If you don't keep to a strict gluten-free diet you open yourself up to issues in the future, including fertility problems (for both men and women), osteoporosis (where you can easily break a bone, even without a fall) and (in a tiny minority) small bowel cancer. It's. Not. Worth. The. Risk. Stop eating gluten.

If you're wondering whether you might pass the disease on genetically (it's not contagious, folks!), the stats show there's a 1 in 10 chance your children could have it. In fact, if coeliac disease is already in the family, it's recommended every close relative gets tested. That means your parents, siblings & children. (That said, very small children may be told to wait until they're older; just check with your GP.)

Unlike some allergies, it's not possible to grow out of coeliac disease. Once a coeliac, always a coeliac.

This neatly brings me to some myths and facts about coeliac disease. Firstly, it's not an allergy. You won't need an epi-pen. It's not an intolerance, either. And definitely not a fad (grrr, I loathe it when people ignorantly suggest this). It is, in fact, an autoimmune condition, which means it can be associated with other autoimmune conditions like type 1 diabetes, Raynaud's and alopecia.

Sadly, there is no cure for coeliac disease (yet!). The only way to prevent further problems as much as possible is to follow a strict gluten-free diet. (I've already mentioned the worst-case-scenario issues that can develop.) But all is not lost! There are advancements in science that show promise. I have a dream of being a granny eating a range of donuts, cakes and pastries from anywhere I choose. But until then, it's the freefrom aisle for me.

Those of you who've been following me for a while will know what I went through. And it all began in Texas in 1996. I was studying for the 2nd year of my degree when one night I suddenly developed horrendous tummy pains. But the next day they'd gone so I didn't think much more about it.

Not long after, the pains returned. And again. And again. I went to the doctor and was misdiagnosed with a stomach ulcer. Then, when they realised they were wrong, they decided I had cysts on my ovaries and I was told to go on the pill.

By this time I'd gone back to England and had a new doctor on my university campus. He was awful. The pill caused my body to produce excess oestrogen (a fact a doctor later told me was a side effect for coeliacs who still eat gluten). I experienced medical gaslighting (I couldn't possibly be suffering as much as I was) and he made me feel incredibly low.

A new misdiagnosis of endometriosis was made and I was given a laparoscopy under general anaesthetic to check. Once again, they realised they'd got things wrong.

I then moved to Bristol and saw an article on IBS. I took my suspicions to the doctor and asked if I might have it. He said it could be IBS and suggested a low sugar diet of Weetabix, wholewheat bread and wholemeal pasta. I followed the diet to the letter but 6 months later there'd been no change. (And in hindsight, no surprise there.)

I was so fed up with being misdiagnosed I was going to leave it and just live with the pain. But thankfully I went back to a different doctor who casually mentioned it might be coeliac disease. And that was the beginning of getting my life back! As soon as I had a positive blood test I went gluten-free. The change was almost immediate. I felt so lucky to be well again.

Annoyingly, I had to do the gluten challenge to get my biopsy, but after it was all over and I had my coeliac confirmation, I went strictly gluten-free again.

So it's been over 20 years since I went gluten-free. And I shudder to think of people going through what I went through (or worse).

So please, share this post. Make sure everyone you know reads it. Get awareness out there. It's the only way we'll make a real change and get those awful statistics down (like 13 years to diagnosis).

And please feel free to share your story below.