Dear Diary

My gluten free journey

If you or someone you know has recently been diagnosed with Coeliac Disease or other condition that requires a gluten free diet, join our Dear Diary and share your experiences of how you adapted to an entirely new diet or regime. I know that your experiences will help and encourage others in a similar situation. Feel free to contribute once, or every day if you wish, I will be delighted to share your story. Send me your story here.

Sunday 2nd October 2016
Efa aged 11

Dear Diary,

I have now started secondary school which will be a time I will always remember. Me and my mum have been looking into school dinner options. We found out that the caterers can provide a gluten free menu especially for me which I thank them for, but the school dinner ladies can’t guarantee that the food that they’ll provide for me is totally GF because of cross contamination. This is because too many things are happening in the kitchen at once for them to be sure that nothing will drop on my food, or that they may use the wrong spoon.  It’s disappointing because I would have liked to have been able to have school dinners, but I’m glad they are telling us that they can’t be sure as that prevents me from getting sick. They promise to provide a GF Christmas dinner for me which makes me happy!

I have packed lunch as I can’t have school dinners, but what annoys me is that most GF snack bars contain nuts which most schools don’t allow as they can cause serious reactions to people who are allergic to them. This restricts me a lot in options. I am getting a bit bored of fruit bars but I do have the occasional pink panther wafer and we just found Chocoful bars by Prewett’s, I am looking forward to trying them.

In my food tech classes there is a girl who also has Coeliac Disease. It is lucky that we got put together as we both can’t use the same ingredients as the rest of the class, and we both know what it is like to suffer from cross contamination. More than three quarters of the recipes we have to cook contain gluten, so our teacher is providing gluten free flour and other GF ingredients so we can cook with everyone else.

Monday 29th August 2016
Efa aged 11

Dear Diary,

Over the last few months a lot has happened. When we were browsing places to go to meet a friend for her birthday we came across a restaurant called Niche, and it was totally gluten free. They kindly served a free GF birthday cake for our friends pudding! It was very nice for once being able to choose from anything on the menu.

On my birthday we went to a place called Yorica in central London. It’s an ice-cream, shake and frozen yoghurt bar where everything is free-from gluten, dairy, eggs and nuts, even the cones! There was a huge range of toppings and flavours. For my ice-cream I chose chocolate & ginger, vanilla, and cookies & cream ice-cream topped with an Oreo, a custard cream and lots and lots and lots of sprinkles. It tasted amazing but nothing can beat a classic ice-cream

To see how long I have had Coeliac Disease I had to have a bone density scan at the hospital. For this I had to lie down on a bed extremely still with my knees and feet strapped together, whilst an x-ray machine hovered over me and took pictures of my bones from head to toe. It was a strange experience but there was nothing to be scared about. We have not received the results yet but I am looking forward to seeing the picture of my skeleton at my next appointment.

Saturday 23rd April 2016
Efa aged 10

Dear Diary,

This month I’ve learned a lot. I found out what cross contamination was like, and I’ve had ups and downs and roundabouts.

Cross contamination was awful. We were at a friends for a birthday party and we had pasta for dinner. I had my own pasta and everyone else had theirs. I didn’t notice anything for a couple of hours, but then it came over and hit me – I realised I had eaten gluten. It was an accident; we think it was when the pasta was being served up – my rice pasta was drained in the same sieve after the normal pasta.  That night was awful, I was being sick for at least three hours and I had a severe stomach ache, I couldn’t get to sleep for hours, I felt like it was never going to end. I’ve learned from that I now to be a lot more cautious with what I eat and how it’s cooked when I am out or with friends.

School isn’t much fun when you are coeliac. There are lots of party bags, cakes and birthday doughnuts, and I stand there wishing I could have them myself. I’ve taken a box of gluten free cookies in to school for occasions like that but it’s still not the same. 

I went on an Easter egg hunt in the holidays but I sadly couldn’t eat any of the chocolate prizes because as well having Coeliac Disease I also have an allergy to dairy. I am hoping that after a year or two when my stomach has healed I might be able to have dairy again, but I will have to wait and see. That day wasn’t all bad as after the hunt we found a café nearby that had a gluten free carrot cake that I could eat, it was delicious!

I was sent a gluten free cookbook by my great aunt, written by Naomi Devlin – River Cottage Gluten Free. There are so many amazing recipes in it that my daddy and I have been making, in some we have to substitute the dairy ingredients. Instead of butter we use my soya spread.  My favourites so far are the Sticky Maple Toffee Pudding, the Mocha Muscovado Brownies and the Chocolate and Coconut Brownies.

Tuesday 2nd February 2016
Efa aged 10

Dear Diary,

This month has been hard. I found out two weeks ago that as well as having Coeliac Disease I am also allergic to eggs and dairy. I have had lots of tears but I have got through it. I went to a party yesterday and in the party bag there was a piece of cake which I had to give to my brother as I could not eat it. This was a shame as cake is one of my favourite things to eat but it had all three things in it that I can’t eat. The worst bit was when he told me it was Red Velvet, my favourite cake.  

Not being able to eat all three has really made me think about how it’s not so bad having Coeliac Disease as there are lots of things you can still eat.

One thing that helps me through it is that my Uncle can also not eat gluten, dairy and eggs, as well as some other things, so it is nice to know there is someone else who is going through it with me. Also my Auntie is a Naturopath so I went to see her to find out what I can eat to make my life healthier and easier. She gave me lots of recipes which I like trying out and testing. My favourite one so far is a healthy chocolate spread – it’s made using tahini, coconut oil, maple syrup and raw cacao powder, and it is delicious spread on apples and banana. We have also been making lots of really healthy new breakfasts, soups and smoothies. Even my bother who normally hates soup liked the new soups we have made. 

Sunday 3rd January 2016
Efa aged 10

Dear Diary,

In December we heard from the hospital that the biopsy confirmed I definitely had coeliac disease. This year was my first Christmas with coeliac disease. It was a big change for me; the day of the school Christmas dinner I had to bring in my own gravy in a flask, and a brownie for pudding. When I go out to eat I only have the choice of one or sometimes two things. I am so grateful for The White Hart in Crystal Palace, the pub I went to for Christmas lunch, as they happily supplied gluten free chipolatas and made gluten free Yorkshire pudding just for me; it made me happy.

We now shop more in Tesco’s as they have a better gluten free range, I am really enjoying the cake! 

I found out my favourite Youtuber – StacyPlays – also has coeliac disease. Knowing other people out there all around the world are in the same situation as me is comforting and it makes me more confident about it.

Next week I have an appointment with the doctor to discuss foods I can get on prescription. I will let you know what happens.

Sunday 6th December 2015
Efa aged 10

Dear Diary,

A week ago I was diagnosed with Coeliac Disease. It all started off with just a blood test because of sickness I was having in the evenings. The blood test showed that the antibody for Coeliac Disease was over ten times higher than the normal level. Because I didn’t have any other normal symptoms of Coeliac Disease I had to go to hospital to have a procedure to confirm it. This was called a biopsy and it was done under a general anaesthetic in hospital. As it got closer to the time I became more scared about what was going to happen, as I knew it could change my life. After the test a doctor came in and told me that they were pretty certain that I had Coeliac Disease because they could see damage to my stomach lining. I still have to go back for the results of the biopsy.

I think it will a big change for me as I have never had anything like this before. I won’t be able to eat lots of things my friends can eat. I wasn’t able to buy any cakes at the school Christmas fair – but I made my first gluten free muffins for the fair and that was fun. We have found out that there are lots of things in the shops that are made to be gluten free. I want to thank all the companies who help people like me by making their products gluten free.

I have also learnt that when I am eating out I have to be really careful because some things that are usually gluten free are not. Grated cheese is sometimes kept in floured bags so I must always check if I have a jacket potato with cheese.

Today to show me eating gluten free wasn’t really that bad, my neighbour who also has Coeliac Disease was kind enough to bring me a bag of gluten free goodies that I can eat, including a gluten free Christmas pudding…yum! I can eat it on my first gluten free Christmas.