Kay wrote a blog earlier this week about her coeliac diagnosis and how she was taken seriously by her doctor straight away.
It is very odd as Kay and I have been best mates for years and I had stomach problems for all that time too. She kept telling me to go and get tested as maybe I had coeliac disease as well. But every time I went to see anyone, they said I didn’t have the right symptoms.
Turns out I did – and I also had lots of symptoms that were difficult to connect to coeliac too, like a rash, brittle nails, mouth ulcers and joint pain.
The stomach pain was phenomenal. The brain fog and fatigue was awful, too. It felt like I had a permanent hangover (OK, OK I do like a cider or six… but this was unrelated, honest!). The old Coeliac UK advert where a woman is carrying herself down the street really sums it up.
Anyway, my diagnosis wasn’t quite as simple as Kay’s, who found out a couple of months after first seeing a doctor. It took TWENTY TWO years for me to get a diagnosis… and the only reason I got one then is because a good dietitian friend told me exactly which test I needed and had a long chat to try to work out the problem. Bless him. He was my stomach’s saviour.
At first it was a total shock to the system and I couldn’t quite believe I had an answer. Yes, it was a big deal but it also meant I might have a chance of feeling human after decades. Luckily I’ve always known how to cook from scratch (thanks, Mum) so it was fairly easy for me to work out how to adapt things. It definitely took a while to master cakes and Yorkshire puddings though and I have to admit, my gluten-free pastry has a long way to go. Another plus for me was that Strongbow has always been my drink of choice, and that is safe. Hallelujah!
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I was diagnosed in 2012, right at the time the free-from market boomed so I used to say, “I got diagnosed at the right time” because I could get most things at the supermarket. Yes, it was much more expensive but I certainly didn’t have to starve. And they have upped their game so much, the supermarket aisles are continuing to grow and I think I would now struggle to think of foods I can’t get hold of somewhere or make myself.
Manufacturers have realised they can use alternatives to wheat flour in things like sausages so they are naturally gluten free. In fact most barbecue ranges are entirely gluten free, so roll on summer! It has been much easier this year to guide people to what is safe for the kids (both my daughters are coeliac) and me.
Eating out and going to people’s houses was an absolute nightmare at first though. That’s the reason I came up with the idea for Safer Eating in the first place. I wanted to make a difference and make it easier for tricky eaters to eat out safely and live a normal life. It is a total change in behaviour, having to pick people up on what they are doing when they are cooking for you, question every single ingredient in recipes, tell them when they have contaminated something and silently inspect the dishcloth and tea-towel situation. But if you don’t let people know, they just don’t realise. And you can’t let it slide. In time, friends and family learn, which means you can trust them and the stress levels go down considerably.
Eating out has got easier and easier over the years and we now have some great restaurants that cater for us really well. Even in Spain, we have several places who serve us great meals. Every chain I have eaten at over the last year has pretty good allergy menus and checklists. Sometimes I have so many options I can’t make a decision. Now that is a new feeling.
Food labels have changed dramatically since new legislation came into play in 2014. It’s rare that I find a company that is not complying and it makes it really easy to spot gluten, wheat, rye, barley or oats on food labels. Even my six year old is now a dab hand at it.
Instead of grieving for foods I can’t have, I now get ridiculously excited if I find a new product or safe recipe. My health is way better and I am eating healthier food as I do a lot more cooking from scratch. It really doesn’t have a major effect on my life anymore and we definitely don’t let it stop us doing anything.
The only problem now is the risk to my waistline. Being gluten and dairy-free used to be the perfect diet as I couldn’t eat out, get takeaways and scoff ice creams. Now, though, the world is my oyster. With gluten-free chips on the side.