How To Manage With A Coeliac Child – Our Journey

Our Story

How do you manage with a coeliac child when they’re diagnosed? It’s all a bit of a shock.

It’s nearly 5 years since we had that one blood test that started this our journey which has led us to this point. Our diagnosis with coeliac disease.

We’d had so many GP appointments, antibiotics, seen consultants, and each time it was “she’s growing, her bodies still fighting off the infection, inflamed lymph glands, she’ll grow out of it”.

OMG, she’ll grow out of it.

In January 2018 I was at my wits end. I’d literally had enough.

We’d battled through September 2017 when yet again she was struck down with another horrendous ear infection. It’d go from one side to the other, antibiotics given that didn’t do the job. She’d then go deaf. Yes, deaf, in one or both ears. For no reason. Her ears would just go pop. Then about 3 weeks later they’d pop again, and she’d have to wear ear defenders to school and in the classroom as she was so sensitive.

We were both exhausted. School pressure, work pressure, family life. We were both at breaking point.

But it was Christmas 2017 that things really took a turn. I looked at my child and she looked so very ill. This time I was so worried. She looked like a ghost. Now, she’s a child that is pale, always has been but give her 5 minutes in the sun and she catches the sun like no ones business. She literally gets sock marks!

But this time, I was panicking. She was drinking water (and she hates water) like no ones business. That had me thinking that she was beginning to develop diabetes. But the fact she was as white as a sheet made me think that we had bigger problems. But what they were, I’d no idea.

Coeliac Disease & your Child – What every parent needs to know

The beginning of our coeliac journey

So January 2018, we had a doctors appointment. We saw our fabulous locum GP, who she’d already taken a dislike to as he’d swabbed her ears previously & it had hurt. She wasn’t impressed! But he listened. He looked and he agreed that we needed a blood test. The diabetes test was negative, but she was obviously not herself and didn’t look well either.

It was a Monday, so as we were already late for school, we set off to the hospital for the blood tests. I tried to explain the procedure to her as we were on route. But she didn’t listen!

Whilst it was an entertaining blood test “why are you stabbing me”, “mum” “i want chocolate”. After 7 vials were filled with blood, yes for sure our GP was being thorough & one bar of chocolate later we were heading home to await the results.

The results

This was before the pandemic. I was sat in a meeting in London when the phone ran. It was just 3 days after the blood tests were taken. I was told that the tests had shown something and I needed to make an appointment. Ok great, when? 2 weeks time was the earliest phone call. 2 weeks? Really? Receptionists need to appreciate the panic that we go through when we don’t have information & worried about our child.

Two weeks went by, and a different GP dropped the bombshell of Coeliac Disease by phone. What? I’m not sure I remember the rest of the call, but luckily our first GP called regardless as he’d wanted to discuss it in person. We went in & lucky for us he had experience with coeliac disease. Our first blood test TTG results were 128. Depending on your local lab, a normal range is 0-7 (or 0-20). Either way, we were 10x the normal limit. Sufficient to say she had coeliac disease.

Don’t change the diet yet
I’m going to fast track a referral for you
Keep eating gluten until you see the consultant

We left in a bit of a whirlwind, but at least we now had a diagnosis. But what did it all mean. I’d vaguely heard about the disease, it was covered in college when I trained to be a nursery nurse, but how was this going to affect her life or ours? We were going to have to find out.

Official diagnosis with the Consultant

We were lucky enough to have private health care at the time. We were going to have to wait at least 6mths to be seen so on the NHS, so I called them, found 2 specialists based in Cambridge at the Nuffield Hospital and we had an appointment on the 8th February.

The Consultant took one look at her test results & said, I can categorically say you have coeliac disease. As your test results are so high, I don’t need to do an endoscopy but I do need to do a further blood test which will confirm your results, and a gene test to see your markers there too. It will show up if it’s hereditary & you’ll be likely to pass it on. Her blood test results this time were 238 & she’s positive for both markers. The whole family were tested & negative on the initial blood test.

She explained about the villi in the small intestines that shrink. I still have the envelope she drew on in a file. She said that whilst prescriptions for GF items in the UK are being taken away, we’re still lucky in the fact that it’s an auto immune disease that can be treated by diet alone. That’s amazing in itself.

What next

Then we started our journey into coeliac disease. Much is documented on the website, Facebook and Instagram posts.

The first shop of over £100 spent on GF foods failed miserably. She either didn’t like it, it tasted differently, it just was awful.

So we did it our way. I learnt to cook anything and everything gluten free. Whether there was a recipe for it or not – I just converted it to be safe.

I changed everything we’d use as a family – breakfast cereals, pasta, condiments, soy sauce (often forgotten about!), stock cubes. So anything I reached for was safe, I didn’t have to double think.

But don’t get me wrong, it was hard at first. The first pizza attempt was a total disaster. They and the tins ended up in the bin.

It got better & easier. Parties and sleep overs were harder but manageable, the last year of primary school was good at the time, the secondary and upper have been harder. Literally no options for her other than a jacket potato. And she believes potatoes should only be chips!

And the point of it all? To help my child and her health improve. You only learn about the things that affect you. It’s how it goes. When you are at the centre of the storm, it’s all you see, feel & breathe. When you are outside of it, not affected, you can’t see the dangers that I see when eating out, or at family events.

Now, 5yrs in, we’re winning. And from our journey, helping other mums like me. Helping mums understand what they need to know and do to help their children adjust and adapt to their new lifestyle through my book. First, in 2021, I set up Gluten Free Little Cook, creating baking kits for kids with coeliac disease. Making kids smile, have fun and make safe tasty treats. One family tells me ‘I bring joy to their family’. That’s enough to make me cry!

I wrote the book as I saw that the help given to us mums, parents, is different. You might get a great GP who knows the processes, you might not. You might get information in the form of leaflets, you might not. There’s no overall standard. And I feel that is a huge area that needs a change. You need to have a reference point without searching the internet or Facebook groups.

In the UK we’ve a great charity, Coeliac UK, who everyone should always refer to in the first instance as their guidance is for the UK specifically. They’ve a school pack you can download and pass onto your school. But as a mum, I wanted something different, I wanted to ask questions, talk to someone that had been there, done that, who’d have answers so I’d know what to do, how to do it. I just couldn’t find it.

So, I wrote it myself. Me! Write a book! Goodness. I truly didn’t see that one coming. Would it win a Pulitzer Prize? Nah! But that’s not the point. But, it is doing what it needs to do.

It’s helping give mums confidence, help them not panic, to lessen their overwhelm in the beginning, by giving them simple and clear explanations as to why you need to do what you have to do. The book helps you understand the what, why and how. It makes it easier to get your head round everything. It makes life easier. That’s what it’s all about.

Oh, and remembering to ALWAYS have a snack in your bag as a back up!! And a water bottle specifically for them as they can’t share!!

I can help you too – click here to grab your copy of my book, direct from Amazon today. It will help make your life so much easier and your first steps into your coeliac journey, that little bit less overwhelming. I’ve been there, I totally understand.

Lots of love

Nicky

June 19, 2022January 24, 2023

How to survive a party with a Coeliac Child

Parties, how do you survive a party with a coeliac child? It’s tricky but with a bit of planning it is absolutely possible.

Parties for children are part of growing up. Fun, noise and goodie bags!

To get dressed up, play party games, having fun, dancing. Eating their body weight in sugar!!

But what if you’ve a coeliac child? How are you going to manage keeping them safe?

You want them included, be involved, have fun but how do you ensure they don’t run the risk of getting glutened?

managing a party with a gluten free child

So how can you manage it?

First, speak to the party host. It’s not an easy conversation to start, you feel you are causing a fuss, being difficult, but it needs to be done. And the earlier the better. People are more likely to be adaptable, make the changes to include your coeliac child if they know early.

Keep it clear and simple. Your child can’t eat gluten. It makes them ill. That you’d be happy to supply their party tea on a separate plate or in a lunch box to keep your child safe. What are they having so that you can arrange to have the same similar foods.

But what if they are at a venue? Does the venue cater for your child? Do they understand about cross contamination?

I had this for one party not long after her diagnosis. It was a roller-skating party. One she really wanted to go to. How would I negotiate it? I chatted to the mum when we got the invite as she had to choose what she’d eat – fish fingers or nuggets & chips. I said I’d have to send her with a packed lunch as I didn’t know if the venue could cater for her. But I knew she wouldn’t like sitting there eating a packed lunch when everyone around her was having nuggets & chips.

Contact the party venue

I got the details from the mum & gave the venue a call. I had a surprise. They knew about the disease. They understood and catered for various allergies. GF nuggets, fish fingers and chips were on the menu. They’d need to cook it in the oven as their fryer was used for other gluten items but would serve hers on a separate platter.

They skated their hearts out for an hour or so and then time for tea. Her little face lit up so bright seeing she was having the same as everyone else. Don’t underestimate the difference it makes. Watching her sit round the table chatting to everyone, whilst munching on her chips was fabulous to watch.

Now obviously they can’t have the cake, something that lots of children look forward to so go prepared. I often made cupcakes & would supply one in advance to come out with her party bag, or for to have when she came home.

My Top Ten Party Survival Tips

State that you’d love for your child to come but that they have a special gluten free diet.
Keep it simple. That they can’t eat gluten that’s in wheat/barley in food/drinks (cheap cola)/some sweets/cakes etc.
That they can’t share due to the risk of contamination – fingers that have been holding a gluten sandwich dipping into the crisps/cucumber sticks etc
Is the party at their home or a venue?
If at a venue – give the venue a call so you speak to them direct.
- Ask questions: Do they cater for a gluten free diet.
- Do they know about the disease, about cross contamination.
- Have they a separate fryer for chips, gf nuggets, fish fingers or can they provide oven cooked ones?
- Do their responses make you feel ok about the venue itself?
Is it at the parents home? Ask what is the theme, what are they planning food wise? Is it a typical party spread, pizza or a BBQ? By finding out what they are having, you can plan.
Can you find similar suitably safe gluten free alternatives? Or do they offer to supply them? You’ll need to explain to them about cross contamination. It’s probably easier to send your child to the party with a lunchbag or plate covered in clingfilm & named, to be unwrapped when sat at the table. If your child understands and gets the risks about not eating gluten, that’s great. If not, you may have to stay at the party and watch them like a hawk.
Cake – who doesn’t like a slice of birthday cake. But that’s no longer an option for your coeliac child. So source an alternative. Either shop bought cupcakes or homemade ones – pop in a bag tied with ribbon or a cupcake box/tuppaware & give it to the party host to give out to your child instead. Then they aren’t left out.
Party bags. Now they are a mine field. Most party cones are out, but I’ve had parents make special ones for my child based on the sweets she likes. Ask them to leave the sweets in wrapping for them. Easier for you to trust, and you can read the ingredients if needed! Have a swap box at home too – just in case. Helps avoid disappointment
Always be prepared. Have snacks in your bag, gf biscuits, gf oat bars etc and ALWAYS send them with a named water bottle. Something they know is theirs so they can go back to it when needed. Drinks bottles/cups are always getting muddled up & they always seem to end up all drinking from one cup!!

Need more help?

Need more help? I had to find my way, just like you. I didn’t want other parents to struggle at the beginning. I’m just a regular mum like you who happens to have a coeliac child. It is overwhelming in the beginning. It’s hard I won’t lie and it’s lonely. Friends and family don’t get it. I do as I’ve been there & it will be part of our life forever. It’s second nature now, and it will be for you too in a short while. If you need extra info, help and a gentle guide to getting it right from the beginning, here’s a link to my book on Amazon that I’ve written to help get you on the right path – Coeliac Disease & your Child – What every parent needs to know. Available now on Amazon for £15.99.

Helping mums help their coelihttps://amzn.to/3R1oXKyac child

February 21, 2022January 8, 2023

Coeliac Disease and your Child.

What you need to know

If you’re here, welcome to the club. It’s quite a small club, but as more testing is done earlier on those that have various issues, well, more join.

Your child might have had symptoms, they might not have had any, it’s a tricky disease to determine, but easily done with a quick blood test.

Once your child has been diagnosed with Coeliac Disease, and the consultant has told you to go gluten free, then you can start making changes to your daily lives, their diet and getting everything sorted.

In the early days, it can be overwhelming and quite lonely. Your friends, whilst being supportive, won’t probably get the changes you have to make. I remember mine understanding the cutting out the wheat, but not understanding we couldn’t just grab a bag of chips from the chippy. But they are gluten free….. Yes, but it’s how they are cooked, if they are cooked with other gluten items….. In the beginning it’s a bit like putting a very tricky jigsaw together.

Coeliac Disease Symptoms.
Copyright Gluten Free Little Cook

So what are YOUR first steps?

My first points are this:

Join Coeliac UK
Learn what you need to look for
Learn to read labels well
Allocate a cupboard /shelf to your GF child
Check everything in your kitchen / storecupboard/fridge/freezer including stock cubes!
Grab my book from Amazon to help guide you through easily – don’t struggle

Where to go for help

There are lots of different Facebook groups for adults and a few for parents of coeliac children too – search in groups to see which one fits best with you.

Coeliac UK – they have a website and you can call them with queries too. Very handy when you just want some reassurance.

Your GP/Consultant/dietitian. As it is your child that is diagnosed, you should be allocated a dietitian that sees your child on a regular basis in the first year of diagnosis, and then ideally yearly. Yearly tests include blood work, height and weight measurements. It’s to make sure that they are growing well, catching up if their body has been malnourished. The blood tests are to ensure that their TTG numbers are dropping adequately and heading to the ‘normal’ range.

Coeliac Disease & your Child – What every parent needs to know

When my daughter was diagnosed 5 years ago, I didn’t know what was required, what we needed to do, how it was all going to work. The overwhelm was incredible, but, as ever, I had to find the solution to the problem.

I researched, I read, I learnt. Whilst we had good support, I’ve read so often that there are those that don’t. So many of the groups on FB are adult let, making suggestions that don’t appeal to a child. Adult taste buds are different to a child’s. They don’t want to drink peppermint tea if they are glutened. They want to be normal, be like their peers.

I originally wrote an ebook which has now been converted into a book, updated and published on Amazon to help parents like you. Full of useful information to make your transition much easier.

From stories that will resonate with you from other mums, to ideas on how to organise your kitchen cupboards, keep items in the fridge and cross contamination, a coeliac’s biggest risk.

It doesn’t have to be hard. There is an easier way.

Grab your copy to make life easier & with less overwhelm. It’ll help, I promise

Nicky

January 17, 2022January 8, 2023

Coeliac Disease – What you need to know going gluten free

A starter for 10!

So much to take in

Just diagnosed with Coeliac Disease? Yes, in the early days it can seem like an absolute whirlwind. Do this, don’t do that, you need this, you need that.

What you actually need is a little calm approach, and then everything will be ok.

With a little knowledge, you can tackle anything.

So many times now I see in groups lots of people newly diagnosed, asking questions, can I have, is this ok, I don’t know what to do…..

Help is at hand!

I’ve pulled all the info you need as a parent into an e-book to help you help your child in the early days Coeliac Disease & Your Child – What you need to know, But I was asked to have the below poster available on it’s own. That’s now part of a 10 page printable download that you can print out or save to your phone.

Download, print a copy, laminate it and stick it on your fridge. No one will be confused again.

It will help you in several ways to take the overwhelm out of the early days.

Coeliac Disease & Your Child – What you need to know

The poster guide isn’t the be all and end all of everything, but, it is a great start that you can use to help guide you in the early days, whether you are a parent of a coeliac child or an adult who has just been diagnosed.

When you have the basics, you can do anything.

And when you don’t know, you can ask. There are Facebook groups, Instagram accounts all with lots of information, hints, tips and more. Or if you fancy baking up a storm, our previous kits are available on our shop page.

Fancy subscribing? Head over to look at our baking kits for an hour or two of fun baking with your child.

Got a burning question? My DM’s are always open (in working hours!) Just drop me a message from our Facebook or Instagram accounts.

Going gluten free for Coeliac Disease doesn’t need to be difficult.

November 15, 2021January 13, 2022

Gluten Free? Double check your labels.

Check, check and check again!

It’s coming up to the crazy time of the year. But you know what is safe. You’ve bought it a hundred times. But why do you or your child have a reaction this time?

Yes, the manufacturers have changed the ingredients. It happens so often, with little or no notice. It’s time to check your labels.

It’s hard work being coeliac or having a coeliac child. We start off well reading the labels, but then as its something you buy on a regular basis, you don’t double check. And we need to especially at this time of the year!

It’s always good to check your habits this time of year, to double check the ingredients on the label, just in case that they have changed. Better to check in advance before eating than find out afterwards and be stuck at home near a bathroom or in bed.

But what are you looking for?

Check your labels. You are looking for anything that contains gluten.

A great acronym to remember is B.R.O.W.S which is for Barley, Rye, Oats* , Wheat or Spelt.

Any of them can be put into ingredients for food or drinks and are to be avoided at all cost by an individual on a gluten free coeliac diet.

For instance, barley can often be found in own brand supermarket colas or wheat can be in soy sauce.

Oats* are safe as long as labelled gluten free. However, even gluten free oats can cause a reaction in some Coeliacs. They contain a protein called Avenin which mimics gluten.

Learn to read labels

You know what you are looking for and you know that you need be able to read labels well. This can save you a fortune, as not everything you eat needs to be labelled Gluten Free.

Reading labels is key to managing this disease.

Here’s a link to a more detailed info on how to read labels. A label is there to tell you what is in the product & what it is made up of. Do remember that whilst you can scan a label, the scanners are normally behind a few days/weeks/months. A label ‘should’ always be accurate, uptodate & says what is on the tin (literally!). For further details see Coeliac UK advice on food shopping.

Some products use ingredients that are made up of other items too. They will always be stated on the label and their ingredients will read after them within brackets. Think of it like a book. There’s a title, a chapter title & the chapter itself to tell the story.

Sushi was being discussed yesterday in a Facebook group. Sushi has a long line of ingredients, with lots of components making up each sushi roll. So how do you read those?

Break it down

The label states everything that is in the product. The ingredients work from the most to the least.

Starting with the Cooked White Sushi Rice. In the brackets afterwards you have ‘water, white rice, rice vinegar’. That is what is in the rice. After anything that has more than one component to make it there will always be brackets showing what is in it. Further down the list shows that the soy sauce bottle is safe as it’s made of ‘water, soya bean, salt & vinegar’. But since the rice has wheat flour in the whole product, it is a big no.

I know that we will all be busy rushing around in the coming weeks, gearing up to get ready for the big day but do get yourself into the habit of stopping, checking and double checking before you put your usual into the basket. Far better to check in advance or before you or your child have eaten something that could ruin the next 24hrs, put you on tender hooks, or see you missing out on something that you were looking forward to.

Keep warm & keep well.

Happy Baking!

August 9, 2021January 8, 2023

Has your child just been diagnosed with Coeliac Disease?

What to do when you get that diagnosis

It isn’t easy hearing the news that your child has been diagnosed with Coeliac Disease.

It is heart breaking. But at least you now have a diagnosis as to why they’ve been ill.

What do you do now?

The sense of chaos and overwhelm is undeniable when your child is diagnosed with coeliac disease. But, with a little planning and prep, you can get to grips with it and get your child back on track to the best health possible.

Because that’s all that matters right?

It is the only disease that can be cured by diet alone. Isn’t that just amazing.

But where do you start?

I had to start from scratch, there’s lots to learn, but my free Top Ten Tips will help get you started on your journey ticking off all the little things to know and giving you a good starting guide about Coeliac Disease.

There is so much to think about in the beginning whilst you find your feet; from checking labels, finding foods they like, checking store cupboard essentials and learning how to cook in a different way.

My new book is now available on Amazon, Coeliac Disease & your Child – What every parent needs to know. It’s helping parents, especially mums, so that in the early days their not so overwhelmed. That they don’t have to search the Internet or Facebook groups for answers that should be easily available. There’s enough to be doing. Helping your child is the first step.

I was given leaflets. Lots of them, but many irrelevant to my child. Designed for adults. And when you want to go back for some info, you never remember what was in each leaflet. There had to be a better way.

I want to tell you it can all be managed. It takes a little getting used to, remembering to do things differently, but, once you have those processes in place and know what you are looking for and doing, everything will be fine. I promise.

And that is what you want in the first place. To get your child back on their journey to the best of health.

To help lessen your overwhelm, grab a copy today. It will help, I promise.

For more details on the book click here or head over to Amazon now.

Best wishes

Nicky

July 26, 2021March 15, 2022

Being Gluten Free – Managing Cross Contamination

Cross Contamination

Managing Cross contamination & being gluten freel. Just the words fill you with dread. I think it is the scariest part of Coeliac Disease.

But what does it actually mean as a parent of a coeliac child & what happens in your daily life?

Just one crumb can mean the difference between being well and being ‘glutened’ by cross contamination. Glutened is the term most Coeliacs use when they have accidently consumed gluten. How your child reacts depends on how long they have been off gluten & on their gluten free diet and what their reactions were before they were diagnosed.

It’s just a crumb……..

But it’s not just one crumb that’s a visible contaminator. It’s if someone uses the wrong butter & scrapes their gluten bread with it, dipping their knife into the jam jar, the mayonnaise, mustard, cutting the cheese with a dirty knife on a crummy breadboard. Sharing bags of crisps, popcorn, sweets are out too as maybe that person or child has just had their regular gluten sandwich, and puts their hand into your child’s crisps…. The risk is too great.

So how do you avoid cross contamination?

Being Gluten Free - Managing Cross Contamination — Managing cross contamination in your kitchen for your coeliac child

Kitchen

Keep your kitchen clean, crumb free and have processes that everyone knows so that any contaminations can be minimised at all times. Let’s focus on the kitchen and the various risks you may or may not think of. This is based on how we work our kitchen as I’ve one child with Coeliacs and one without.

When my daughter was diagnosed, I chose to change pretty much anything that the ‘family’ used as a whole, so that if she grabbed anything, it wouldn’t make her ill. This included all cereals, crisps & anything I cooked with.

We’ve one corner area in the kitchen that houses the toaster & bread bin. This is the only area that ever has gluten in it. I stopped baking with gluten flour in 2018 as the potential for contamination was too high. Flour just goes everywhere & wasn’t worth the risk once diagnosed. See our Top Ten Tips in beginning your gluten free journey.

CHECK EVERYTHING!

Cupboards – Once diagnosed, check everything that you use for family cooking. If you use packet mixes, stock cubes, spices, frozen meals, chips – check to see if they contain wheat/gluten or are a ‘may contain’.

Your child will need their own butter, jam, spreads. Squeezy bottles – honey, jam, ketchup come handy here as they are less likely to get a knife dipped into them.

Managing Cross Contamination

Chopping Boards

You have a lovely wooden chopping board. You use it for everything. Cutting bread, vegetables, fruit. It’s cleaned & scrubbed on a regular basis.

Wood however, can harbour the gluten & contaminants so it is best kept just for bread – gluten bread and not for using to cut/chop other items. We have several plastic boards that can be used specifically for veg/fruit/gluten free items and they can be popped through the dishwasher.

Oven

You are cooking a multitude of items, both gluten and non gluten in the oven. Put the GF items on a separate tray and place at the top of the oven to cook. This ensures that the GF tray doesn’t get any contamination from drips of non GF food cooking at the same time.

Toaster

Either have a completely separate toaster for GF and non GF bread to be toasted, or, make use of toaster bags. Be mindful how you handle the bags & get the toast out of the bag. Remember they’ve been in a ‘gluten environment’ if it’s a non GF toaster, the outside of the bag is potentially covered in crumbs etc. We use a pair of tongs to remove the toast/waffle from within the bag.

Hob

Stirring – ensure you use separate spoons if you have GF & non GF items in pans on the hob. Ensure that you have disposed of any wooden spoons and change to silicone ones instead.

It’s hard in the beginning managing cross contamination, but with time, knowledge and processes in place that everyone adheres to, it is possible & becomes second nature. If your child is older they will learn to question what they are eating, could they read the label to double check its safe, ask if it has gluten in it. Younger ones learn from following what their parents are doing & learn that they don’t feel poorly any longer.

And when, a few months down the road, you see your child blossoming again, looking well and not pale, feeling ill or sick, or having a sore tummy, spending hours on the loo, then you will be glad of all the hard work you put into it at the beginning and know that the processes you have in place are working, keeping your child safe & well.

July 5, 2021October 4, 2021

Labels. Is it Gluten Free?

Reading Labels well....

Reading labels is key to Coeliac Disease. If you can master those, you have the ability and confidence to make informed decisions.

I see on lots of Facebook groups, “can I have this”, “Is this safe”, “is this gluten free”. Make life easy and learn to read food labels well & confidently.

Reading is now a key part of your coeliac or gluten free lifestyle. My top suggestion is join Coeliac UK – you then have access to an online digital membership or receive a handbook. With membership comes access to two apps. One for scanning labels and one for finding venues to eat at.

As a Coeliac, you need to cut out all items that contain gluten, or ‘may contain’ gluten/wheat. Remember the key word ‘B-R-O-W-S’ to help you recall the items you need to look out for on labels. These all need to be excluded from your diet:

Barley, Rye, Oats, Wheat, Spelt.

Anything with those items in will potentially cause a reaction and make you ill. Being ‘glutened’ as it is known! And the longer that you are off gluten your reactions may change/become more severe.

Oats are an exception as they don’t contain gluten but a protein called Avenin which mimics gluten. Oats must be processed in a wheat free factory and labelled as Gluten Free to be safe to consume for a Coeliac. However, there are still a percentage of Coeliacs that react to oats regardless of whether they are Gluten Free or not. If you have a reaction, you need to speak to your consultant.

Learn to read labels

Reading labels is key. We have excellent food labelling in the UK which helps in spotting any item a Coeliac can’t eat.

Every label has to list every ingredient and component that makes up that ingredient.
They are always listed in order of the most to the least.
Each ingredient component will be listed in brackets after it to show what it is made up of
If gluten or wheat is within the list of ingredients it should be in bold writing to show it is an allergen

In the example above, the label has percentages of an ingredient to show how much is in it, and if you look carefully after the 3rd ingredient, the Prawn Cocktail Flavour, it has brackets after it so that you can see what the flavour is made up of, what it’s particular components are.

A label will ALWAYS be up-to-date & overide a scanning app. They are often updated later.

May Contains

Coeliac UK’s advice is to avoid may contains & one I agree with. It’s like trying to guess which one box in one hundred boxes has a present in by sight alone. Some packaging – such as Cadburys chocolate bars will state ‘may contain wheat’ or ‘may contain gluten’. Some Coeliacs eat them, some don’t. We don’t eat may contains, nor use them in baking or in our boxes.

Gluten Free

When an item says it is gluten free, that itself is a legal term and undergoes rigorous testing to be declared so. As we are looking out for the key 4 allergens to remove from a Coeliacs diet, when you see Barley listed, it is obviously of concern. “Ooh, we can’t have that, isnt that bad”. But it says it is gluten free. What’s the right answer?

Barley is one of the 14 allergens and is listed on labels to demonstrate that it contains that ingredient. Some people have a Barley allergy on top of Coeliacs or separate to it. An item that is labelled Gluten Free will always be less than the 20ppm (20 parts per million) of gluten deemed safe for a Coeliac.

So if you are having a gluten free beer/lager, and it states Gluten Free but also states it has Barley in it, then the barley will be less than the specified 20ppm, it will have had the gluten removed though the various stages of fermentation / distillation and be totally suited for a gluten free diet. BUT if you have a barley allergy, it is there to highlight to those suffering from a barley allergy that its present.

Understand the basics, and you’ll be fine. But reading labels each and every time is key. Manufacturers are always changing ingredients. It’s always best to check.

June 28, 2021January 13, 2022

Family Celebrations

How do you manage yours?

With lockdowns coming to an end, it’s time to start socialising again. This means eating out again, eating at friends and events. But how do you manage your child at family events to ensure that they are safe?

If they are older, and aware of the disease that they have, it’s important that they have the confidence to question adults/waitresses etc to ensure that they are eating the right foods and that they are suitable for them.

But if they are younger, you probably have to watch them like a hawk, take a packed lunch and watch what other people unknowingly offer them too. It can be so tricky and you have to have eyes everywhere. It can make a family event so utterly stressful for both you and your child.

With a coeliac child, planning in advance is key; always check with a venue before you arrive to ensure they can cater for you, always have a back up snack or two in your bag, a back up packed lunch is always a help at family events especially if its a buffet to ensure your child is kept safe.

Pre-Covid I would ensure that a packed lunch or several back up snacks were available in case the venue or the family member wasn’t 100% aware. If it was to be held at a venue, there would always be several calls and clarification that they could cater for her and that they understood the cross contamination requirements.

It makes planning family celebrations a little hard when venturing out but it can be done.

For my birthday celebration, I wanted to go to one of my favourite local restaurants, The Black Horse. I made the reservation online, and left a message so that I could discuss our dietary requirements. Having never taken my daughter to this restaurant post her diagnosis, I wasn’t sure what they could offer.

I needn’t have worried, as ever their customer service is second to none and they had great knowledge with regards to her requirements as well as having a separate fryer specifically for GF items & chips (always her first option) along with their menu marked up clearly stating what is gluten free / dairy free requirements. We could have a great family lunch out with fantastic food and know that I’d done everything I could to ensure that she could have a meal with the family, be included and more importantly be safe.

More venues are beginning to understand the importance of having gluten free options that are safe for Coeliac’s. Let’s hope that it continues as it makes life so much easier for us parents.

Have you got a favourite venue that caters for you and your child? If so, shout about them in the comments below.

June 7, 2021January 9, 2023

Top Ten Tips for going gluten free

Top Ten Tips

Here are my Top Ten Tips for going gluten free, ONCE, your child’s diagnosis is officially confirmed by a consultant (not your GP) following blood tests and potentially an endoscopy. Most children are diagnosed on blood tests alone if their results are high (10x the normal range). Note that Coeliac Disease is an auto-immune disease and not an allergy.

STEP 1 - Remove all gluten from their diet.

Removing gluten means changing their whole diet and cutting out gluten containing items from their food intake with anything that includes Barley, Rye, Oats*, Wheat, Spelt. A useful acronym is ‘BROWS’ which will help you remember what to look for.

*Oats – can be eaten as part of a gluten free diet but must be marked as ‘gluten free oats’ so they are not contaminated.

STEP 2 - JOIN COELIAC UK.

Coeliac UK is the UK charity which has lots of advice & help for any questions you have. It’s open to all with a member only access to additional information / apps and help.

STEP 3 - READ & LEARN.

There are lots of places for information but be mindful that there is mis-information out there & one person’s view may be out of date. For up to date information check on Coeliac UK first. Be mindful that you look at UK websites regarding Coeliac Disease. Coeliac is the UK spelling and Celiac is the USA spelling.

Learn to read labels well. There are apps to help you double check, but a label will always be most up to date.

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It’s what I learnt and what I wished I’d have known when my child was diagnosed. It would have made life so much easier.

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STEP 4 - CHECK EVERYTHING.

Yes, check everything. Even the strangest things have gluten that you wouldn’t expect. And always double check a label of something you regularly buy.

Check your kitchen ingredients for those you currently use including; stock cubes, packet sauces, anything pre-packaged, soups, tinned items, freezer & fridge food, drinks including cordials, fizzy drinks. Some supermarket own brands have barley in them such as cola.

Anything that can be double dipped or have a knife dipped in it, it will need to be replaced if used by the Coeliac to avoid cross contamination

And not everything has to be labelled gluten free to be gluten free. You’ll save yourself a fortune if you learn to read labels well.

STEP 5 - SAFE SPACE / PLACE.

Sort a shelf or a cupboard in your kitchen for gluten free food items. You will need new suitable breakfast cereals, gluten free bread, pasta & snacks.

STEP 6 - OWN ITEMS.

The Coeliac in the house will need their own labelled butter, jam, condiments that can’t be double dipped. They will need toaster bags to toast their gluten free bread and/or their own new toaster. Label items or place them in a suitable fridge type container so everyone knows not to use them.

STEP 7 - CROSS CONTAMINATION

This is the biggest hurdle. Prepare their food first; use washable plastic or a new wooden board to be used only by the Coeliac for preparing food. Use silicone spoons instead of wooden ones. Cook food on the top shelf of the oven above the regular food so it doesn’t get dripped on.

For further information see Coeliac UK & this blog

STEP 8 - BE PREPARED

Always have a snack with you in case you are somewhere that doesn’t cater for Coeliacs. Research venues if you are going out. Plan ahead.

STEP 9 - EATING OUT

It can be done. You need to find out what restaurants cater for you and understand the disease.

Fish & Chips; they need to have a separate fryer to cook any items to be gluten free – so chips & gluten free fish or sausages need to be cooked there. Some provide gluten free battered fish but fry it in the same oil as regular fish. Heat does not kill gluten! This is definitely cross contamination and could/will make a Coeliac ill.

STEP 10 - THINK OUTSIDE THE BOX

It’s about adapting everything that you already cook or use. Making lasagne, use gluten free pasta sheets, substitute the stock cubes, cooking sauces etc. For Yorkshire puddings, use cornflour (best option). Baking a cake, use gluten free flour.

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