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Coeliac Awareness Week: My Diagnosis Story

Coeliac Awareness Week

Today marks the start of Coeliac Awareness Week 2019 and I thought it would be the perfect opportunity for me to talk a bit more about how I was diagnosed.

Alongside my diagnosis story I’ve also listed some resources I found extremely helpful at the beginning of my gluten free journey, as well as my favourite products and my travel diaries series. If you have recently been diagnosed or are in the process of being diagnosed, please comment below and we can have a chat about all things gluten free! I promise this change of lifestyle is not the end of the world and you will slowly get used to it all!

As part of Coeliac Awareness Week, Coeliac UK is running an assessment on their website for those who are unsure whether they have the disease. You can take this assessment here.

How I was diagnosed

I’ve been coeliac for over 4 years now, which makes my diagnosis feel like a distant memory! I began having symptoms the Christmas before my diagnosis, but didn’t start properly noticing anything until the summer before my third year at university. I was diagnosed in the October, so it took me around 10 months to realise something was wrong, go to doctors, have my biopsy and get diagnosed.

Symptoms are very different for everyone, and one of the reasons Coeliac Diagnosis is so hard to diagnose is because there’s so many symptoms you can have!

My symptoms were:

Stomach cramps
Bloating
Fatigue
Brain fog
Weight loss
Bowel issues &
Lack of energy/low iron

I remember I would have my lunch at midday, get extremely bloated and have a nap for around 2 hours as I couldn’t keep my eyes open. Luckily I was at home for summer otherwise I would have struggled at university!

After a short amount of time being absolutely convinced I had IBS or lactose intolerance, I went to the doctors to speak to my GP about everything that was happening and started a food diary. As you can imagine, gluten is in a wide range of foods so it can be quite hard to identify the specific issue.

Coeliac Awareness WeekThis photo was taken around a month before I was diagnosed. I had lost 1.5 stone in weight and had 0% energy, but managed to make it to the top of England’s highest mountain: Scafell Pike. Haribo and encouragement from my family got me there!

Biopsy

As a routine procedure, I had a blood test to check a range of things such as my iron levels, B12 and also Coeliac Disease as a precaution. This test came back positive for CD and I was referred to the gastroenterologist to have an endoscopy. The hardest part of this stage in the process is that you have to continue eating gluten for up to three months before your endoscopy. If you cut gluten out of your diet completely, you run the risk of nothing showing up on the biopsy. Luckily I continued with my normal diet during this process, so I was able to have my endoscopy pretty quickly.

I remember sitting in bed the night before my biopsy, eating as many doughnuts, cookies and cake as I could fit in my mouth. If this was going to be my last taste of gluten, I was going to end on a high – a sugar high in fact!

For the procedure, I was put under sedation. As you can imagine it wasn’t the most pleasant experience, however it wasn’t awful. It’s all mind over matter and you just have to really concentrate on something completely unrelated to what is happening.

Around two weeks later I went back to the hospital to find out my results. I remember thinking in the waiting area that I just wanted it to be Coeliac Disease, as this meant I only had one food group to cut out. The thought of having IBS and going on the low-FODMAP diet terrified me! Hearing the news that my biopsy came back positive was a mix of emotions, however the main one was just relief! I had an answer and I didn’t need to keep going back and forth to the doctors/hospital trying to figure out what the problem was.

Useful Resources

Once I had my diagnosis, everything else went pretty smoothly from there! I booked in to see a dietician (as all newly diagnosed Coeliacs do) and also had my bone density scan (DEXA scan) at the hospital. My appointment with the dietician went very well and I was handed a wedge of leaflets, resources and information on my new lifestyle. I’ve listed some of these resources below which I hope you will find useful.

Coeliac UK

The bible for any newly diagnosed Coeliac – make sure you sign up to Coeliac UK as a member as soon as you can. You’ll receive plenty of information, tips, recipe ideas, local gluten free groups plus much more! You can also sign up to receive their Crossed Grain magazine and the yearly Food and Drink Directory.

Travel translation cards

These are a staple item if you have Coeliac Disease and want to travel abroad – I wouldn’t go anywhere without mine! It is simply a little card with explains what foods you can’t eat, information on cross-contamination and the implications of getting ‘glutened’. This information is helpfully translated into another language, so all you need to do is hand it across to your server at the restaurant.

I download mine from this website, which has 63 languages available. I also laminate mine, but I can be a little over the top at the best of times!

PS if it’s your first time abroad since being diagnosed, have a read of my GF Travel Diaries series! Barcelona is a must for any gluten free folk! I also found going self-catering really handy as you can prep snacks/lunch to have on the go.

GF Travel Diaries: Turkey
GF Travel Diaries: Barcelona

Coeliac Awareness Week

Gluten Free Starter Packs

A few gluten free brands will send out a starter box full of products, information and recipes to those who are newly diagnosed (evidence of diagnosis is required). I signed up to the following free starter boxes as soon as I was diagnosed.

Juvela
Glutafin

Coeliac UK accredited restaurants

Navigating the high street to find something suitable to eat can be tricky when you’re newly diagnosed. Coeliac UK have come to the rescue once again and have developed a GF symbol that caterers can use to show that they follow the correct processes to produce gluten free meals. These accredited restaurants include Carluccio’s, Pizza Express, Côte Brasserie, Prezzo, Handmade Burger Co and many more! Click here to view the whole list.

Favourite GF products

Now onto the fun part – my favourite gluten free products! I’ve listed a few of my favourite snacks, bread and chocolates below. However there’s so much choice in the free from isle, it’s time for you to explore what’s on offer!

Perkier

With a range of bites, quinoa snack bars and porridge pots available, Perkier really have covered all areas! Ann (the founder of Perkier) also has Coeliac Disease, so you’re in safe hands with these products! My favourites are the salted caramel bites, which are probably the most moreish snack you’ll ever eat. In addition to being gluten free, they’re also vegan and palm oil free meaning they’re great for the environment as well as being absolutely delicious!

Coeliac Awareness Week

Warbutons GF bread (Tiger Loaf)

In my opinion, this is the best gluten free bread on the market. With a crunchy crust on the outside and soft, fluffy bread on the inside, it’s absolutely delicious. The sound of cutting off a slice is the most satisfying thing!

Booja Booja Truffles

Rich, chocolatey and purely decadent, these chocolate truffles are truly delicious. On the pricer end of gluten free products, these are the perfect gift for Valentines Day, Birthday’s or Christmas.

Livia’s

Queen of healthy indulgent treats, Livia’s has a range of delicious products including her Million Squares, Biccy Boms, Nugglets and Dunx. All are gluten free, dairy free and vegan – I promise you won’t be disappointed!

Coeliac Awareness WeekCredit: Hip and Healthy

Have you recently been diagnosed with Coeliac Disease and are looking for more information? Have a read of the below blog posts!

Coeliac Disease – What is it?
My Top Tips For Living with Coeliac Disease
My Healthy Gluten Free Pantry Staples
5 Misconceptions of Coeliac Disease

For more daily content, head over to my Instagram @oatsodelicious where I’ll be posting throughout Coeliac Awareness Week.

Sophie x

In collaboration with Perkier

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