My journey to diagnosis

For the last 10 years or so, since I was in my mid twenties, I’ve had the odd problem with my tummy. It started happening very occasionally, but became more and more and more regular over the last few years. My symptoms were generally painful stomach cramps, followed fairly soon after by an urgent trip to the loo! And then usually a second trip. Then it was generally over. Normally this would happen when I was eating out, or over at a friend’s house, so I figured it was probably linked to germs in other people’s kitchens and a sensitive tummy. I put it down to IBS or something, as it wasn’t an everyday occurrence. I never really did anything about it – just put up with it. In hindsight, that seems a bit silly.

About 18 months ago, we went on a family holiday with some friends. One was extolling the virtues of the Paleo diet, which he’d been on for about 6 months (gluten free, sugar free, grain free, no legumes). He’d lost loads of weight and said he felt fabulous, having so much more energy and feeling alive for the first time in ages. It sounded amazing, so although I didn’t really need to lose weight (well, maybe just a bit of of baby flab) I decided to give it a try. I stuck to the Paleo diet fairly rigidly for a few months, and I noticed after a while that I hadn’t been rushing to the loo and the stomach cramps had been absent. Fantastic.

A few months more, then I thought it would be ok to relax the diet a bit; it was pretty punishing for me as I love my food. But soon after I ate some bread, the cramps etc. returned. This happened a couple of times and it didn’t take long for me to make the connection between the bread and the gut symptoms. So I decided to get myself tested. As I’m already under a consultant at the hospital for something else, as soon as I mentioned I thought I might be sensitive to wheat and explained how I’d found out, they took it fairly seriously and gave me the blood tests and biopsies. (I had to go back on the wheat for a few weeks before the blood tests in order to get accurate results, which was not fun.)

I opted to have the gastroscopy without sedation. This was a mistake, as although relatively quick, it was possibly the most unpleasant thing I’ve ever had to do (and yes, I have given birth). The first set of biopsies came back fairly normal and my intestines didn’t look particularly damaged, but my consultant said he wasn’t quite happy with the results, and wanted to take some more biopsies. I guess he had a gut feeling about it (terrible pun – sorry). The second time, I didn’t hesitate in opting for the sedation, but I seemed pretty immune to it as I was conscious throughout, albeit considerably more relaxed than the first time. (My consultant was surprised to hear this – he said I should have been out for the count with what they gave me – but people react differently.)

The second set of biopsies were borderline. The consultant advised me on the options and I chose to start straight away with the gluten free diet, as I knew it would relieve my symptoms. (There’s nothing quite like the constant threat of maybe having to rush to the loo at any given moment!) It was the right thing to do, as when I had a bone scan, it turned out I have osteopenia. Osteopenia is thinning of the bones – it’s what you get before osteoporosis sets in – so it meant that I wasn’t absorbing calcium adequately and hadn’t been for quite some time. I was quite shocked by this, given I thought I was only borderline or developing coeliac’s disease, yet it had already begun to cause damage to me. I wondered what other nutrients I had been missing out on.

Although I saw it coming, I was pretty upset about the diagnosis. I’ve always been into food, and the thought of being on a restrictive diet was rather grim for me. But we put our bread maker on eBay and I’ve been gluten free for nearly 10 months now. My tummy symptoms have gone completely (unless I make a mistake). I think a combination of going gluten free and also low sugar has improved my skin condition considerably (rosacea). I thought I’d pretty much got used to it all, but I must admit my first Christmas is proving tough. I’ll stick to the diet religiously though – it’s not worth the risk.

About Steeliac

I’m a mid thirty year old, living in Sheffield, the city of steel, hence the name – aren’t I clever? 😉 with my husband and two small boys. I was diagnosed with coeliac’s disease in February 2014. I have also had Raynaud’s disease for over twenty years.


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