Coeliac Awareness Week 2007: Why me?

So – you’ve just been told you should cut out gluten from your diet, probably because you have celiac disease, though there are other reasons for going gluten free.

You’re probably going through one of the following:

disbelief – this can’t be true
denial – this isn’t true
depression – it is true, and I can’t bear it
reconciliation – it is true and I can cope.

These are often described as the four phases of bereavement, and it isn’t too far removed from the way people react to the diagnosis of a lifetime condition.

If you’re asking ‘Why Me?’, the answer is probably that you have the ‘right’ genetic makeup for coeliac disease, you have been consuming gluten regularly in your diet, and possibly that you have also experienced one of the following ‘triggers’:

stress (due to exams, a car crash, moving abroad …)
pregnancy (this can be pretty stressful too!)
surgery (not exactly stress-free)
change in nutritional status (gaining or losing a lot of weight quickly)
food poisoning or a stomach bug.

Sound familiar?

What about the genetic factor: is there someone else in your family with CD?

If you have it, it is quite likely that other members of your family may have an increased risk of CD:

An identical twin has about 70% chance of also having CD
A brother or sister with the same tissue type has about 30-40% chance
A brother or sister who doesn’t have the same tissue type – about 10%
A child – about 10%
A parent – 5-7%.

If you’ve been diagnosed, then you should ask for your nearest relatives to be tested too – just in case.

I know this doesn’t help, if you’ve not yet reached phase 4 (reconciliation), but this diagnosis isn’t necessarily a short straw – the gluten free diet, which will probably mean that you have to cook more food from scratch and eat more fruit, vegetables, plain meat and fish, is a very healthy one.

There are support groups around who will understand how you feel. In the UK, I suggest joining Coeliac UK and attending the local meetings – and visiting the messageboard (this is not a CUK board, but is run by volunteers).

Perhaps someone from other countries could suggest a good source of local support …

I’ve written a book summarising what we’ve learnt over 20 years of dealing with the gluten free diet, and it might be just what you’re looking for. It packs the lessons we’ve learned into what I hope is a helpful and straightforward guidebook. It’s available on Amazon, as a paperback or for your Kindle…