Coeliac Awareness week 2019 - One family two Coeliac stories

When my daughter Katie was diagnosed aged 13 in 2014 it came as a bit of a surprise to us. 

I say this because we knew about coeliac disease as my mum was a coeliac.

However we had only known my mum’s story: that as a child she had not thrived and had suffered all through her adult life until she was finally diagnosed in 1994 in her 50s. 

Katie on the other hand had not been showing any obvious symptoms, in fact her development was monitored from birth as I was part of the Southampton Womens Survey.

She appeared to be growing normally and was an active child.

This started to change as she turned 13, her energy levels rapidly dipped and she seemed to be unusually tired when playing sport.

We took her to our doctor who suggested she was tested for anaemia. We happened to mention that my mum was a coeliac so they agreed to do the blood test.

Lo and behold it came back positive! 

My mum appeared the most surprised of us all as she had been sure having seen Katie as a child that it could not be coeliac disease because of how different she had been.

Over the last few years Katie has attended coeliac clinics at Southampton General Hospital. 

We wondered how we could have missed her illness but looking back our meals were probably mostly gluten free and the hospital suggested she had been self selecting with her food. This makes sense as she had never really liked bread and on the whole preferred school dinners to taking sandwiches and as she got older preferred to take rice salads.

We switched all her food to gluten free and began the kitchen reorganisation and food labelling (something as you can tell from my business I am a big believer in!).

For Katie the switch to a gluten free diet clearly helped initially but it has not been a smooth journey for her over the last 5 years. Her energy levels can still dip and she seems to have been prone to more infections, all alongside developing as a teenager.

After a couple of years of up and down dips and trying to tweak our diet, we sought the advice of a nutritionist. 

This has definitely helped, the breakfast change from gluten free cornflakes to gluten free oats with raspberries, blueberries and flax seeds was a big improvement. 

Katie also drinks lactose free milk, something we would not have considered but has also benefited her.

I also think having regular blood tests to check for anaemia is important as we have found that she has been anaemic when we would have thought not!

Overall her health is moving in a good direction.

For my mum who felt so much better once diagnosed, put on weight and finally had answers to all the years of being unwell she has never looked back!

I have realised over the last few years that coeliac disease can affect people in so many different ways, that it affects the lives of families and that it can feel such a challenge at times.

Although I am not a coeliac I know the importance of raising awareness and understanding about coeliac disease for the future of my mum, daughter and the coeliac community. 

This week is Coeliac Awareness Week…. let’s all spread the word!


If you think you may be a coeliac take a look at the coeliac uk website for symptoms and further information and please don’t be afraid to seek medical advice.

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