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Patient perspective series: What is it really like to have coeliac disease?

Kaye Gambles

WHEN, like me, you have been able to eat what you like for 45 years with no symptoms, bar excessive fatigue, it is a shock when this comes to an end.

I was a silent coeliac.

A sense of loss

One of my favourite pastimes was trying out new food, and eating out, but when I was diagnosed, the bottom fell out of my world — everything I knew had been taken away.

This all happened one week before my birthday, three weeks before our wedding anniversary, and one week before we had a German exchange student come to stay.

At the school, they had told us to serve traditional English food (such as roast dinner, and fish and chips). But as a result of my recent diagnosis, nearly all my quick go-tos had been removed. Normally for all these types of occasions going out to eat was top of my fun things to do, but this time it just wasn’t possible. In addition to this, I had also planned for everyone come to me for Christmas dinner (10 of them).

However, I had no support whatsoever, and socialising became noticeably difficult, as people were, and still are, used to me eating everything in sight.

“It’s just a shame that no-one seems to take much notice of the social effect a diagnosis has. It’s caused me all sorts of problems.”

Social impact

Buffets are a nightmare for people with coeliac disease, but sometimes they are the easiest thing for hosts to do. My family also have a habit of going out for lunch on Boxing Day, not having any inkling of the stress that puts me under. The first time this happened I ended up with a not a very good meal, and consequently fell into a foul mood all day just because of the stress, as I had no say in where we went. Then everyone was eating the one dish (pasta) that I couldn’t have.

That was 4 years ago, but it still grates that the emotional support wasn’t there when my whole normal world had been turned upside down. Through research about the condition and CUK (coeliac UK), and the support group on their site, things have improved and we’re actually off out to dinner tomorrow.

Others will know, the look of “oh great, another one on a fad diet” every time you go anywhere and ask for a gluten-free menu, being told it’s only an intolerance, and the infuriating “it’s fine if you ring before you arrive”, which rips all the spontaneity out of anything. This is never addressed by those who dish out the original diagnosis.

I am very lucky, I’m not allergic to any foods at all, so eating is fun and always has been, but it very nearly ripped the entire heart out of my life, because I was never helped or supported in order to adjust.

Kaye Gambles

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