Have you recently been diagnosed with Coeliac Disease? Then you might be asking some of the same questions I did a few months ago…
What exactly does that mean? Is there anything I can eat now? How am I going to live like this?
Well, luckily I’m coming out of that initial stage of panic and I want to tell you what I’ve found out. Hopefully, it will help you to know you’re not alone in these panicked thoughts and that there are positive answers!
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Let’s start with the basics: What is Coeliac Disease?
Coeliac Disease is an autoimmune disease where your immune system attacks your own tissue when gluten is consumed. So when you have a big bite of that sandwich? Your immune system panics and mutinies against you.
This damages the lining of your gut in your intestines. It flattens the tiny tube shaped growths named Villi and prevents the body from taking in nutrients properly, affecting your digestion.
So put simply: gluten = open warfare in your gut.
What are the symptoms of Coeliac Disease?
For me? There were no symptoms. I’m what’s known as a ‘silent coeliac’. This means that I didn’t present any of the usual symptoms that come with Coeliac Disease. The only indicator that I had that there was something wrong was long term Anaemia and the occasional bloated stomach after meals.
But my gut was still being damaged! People with asymptomatic Coeliac Disease are actually at huge risk. We don’t notice that anything is wrong, meanwhile in our stomach our immune system is causing all sorts of havoc.
I go into a bit more detail about what it’s like to be a silent Coeliac in this post! ‘Suffering In Silent Coeliac Disease‘.
Symptoms can range from person to person. Some suffer massively when they consume gluten. Others have less of a reaction. But in all cases, what’s going on inside is the same.
Some of the common symptoms that people experience with Coeliac Disease are:
- Severe diarrhoea, excessive wind or constipation
- Anaemia, vitamin deficiencies, tiredness
- Stomach cramps, bloating, nausea or vomiting
- Possible sudden or unexpected weight loss
- Dermatitis herpetiformis (a skin rash)
As you can imagine, sufferers of Coeliac Disease with presenting symptoms are not having much of a picnic. (Figuratively of course, most Coeliacs do well with picnics in the literal sense!)
Why do I have Coeliac Disease?
This is definitely a question that I was asking myself when I was diagnosed. Why? Why has my body decided to reject gluten? Is it something I did when I was younger that caused it? Could it be it genetic? Is it because I have so many other allergies?
Is it something you did?
No, it is definitely not caused by something you did when you were younger. There’s nothing that you can consciously do to cause Coeliac Disease.
Is it genetic?
Possibly! Coeliac is known to be hereditary. It’s suggested that the direct relatives of those diagnosed have a 10% chance of developing Coeliac Disease. So if you’ve had your diagnosis, maybe drop a text to your parents or siblings and suggest they get tested themselves!
Is it because of other allergies?
NO! Why? Because Coeliac Disease is not an allergy or intolerance. Coeliac Disease is an autoimmune disorder that affects those genetically predisposed to developing it.
Understandably, many Coeliacs describe it as an allergy when in a public setting. This is because even in the bright new age of 2024, Coeliac Disease is still not fully understood, accepted or included.
You can find out more about allergies vs Coeliac Disease in my post ‘The Big Difference Between Coeliac Disease and Allergies‘.
Help! How do I cure my Coeliac Disease?
Good news – There is a brilliant, tried and tested cure that’s right at your fingertips! No need to head to the pharmacy or rush for a prescription!
Just stop eating gluten. Easy, right?
Okay, maybe not easy…
Technically, it’s not a cure. There is no cure for Coeliac Disease. It doesn’t go away after eating gluten-free for a while. Your body will always have that autoimmune response unfortunately.
The only way to alleviate symptoms and prevent any more damage being caused to your digestive system is by cutting out gluten.
In a way, we are extremely lucky that this solution is available to us. We don’t have to fork out thousands for expensive medical treatments. We don’t have to undergo any scary surgery (usually). Removing gluten from your diet is a fairly easy treatment when you consider other illnesses.
That being said, it is not easy.
I know, I know, that’s a bit contradictory. What I mean is that from a ‘big picture’ standpoint, it seems pretty lowkey. But when you’re looking at it from a ‘I’ve-just-been-diagnosed-and-I’m-panicking’ point of view, it can be very scary and your mind starts racing.
What am I going to eat? Isn’t gluten in everything? Can I still have McDonald’s?
Learning the Gluten Free Life
One thing Coeliac Disease does well is turn your life upside down. After having my tests and waiting for the phone call from my doctor, I was pleading for it to be negative.
I couldn’t fathom how I’d manage not being able to eat things like bread, pasta, pizza! As someone who suffers with ARFID, food was a sore subject for me already. I knew that adding the pressure of making sure everything was gluten-free would turn it into a full blown nightmare.
However, being diagnosed with Coeliac Disease is not as bad as it first seems…I promise!
Gluten free alternatives
Something I learned quickly was that there are gluten free alternatives for like 80% of foods. Now, that’s not to say that they’re all good but they are out there!
Gluten free alternatives are not always the healthiest version of those products so it’s definitely worth looking into foods that are naturally gluten free.
For example, vegetables, fruit, and rice are all naturally gluten free. Many people diagnosed with Coeliac Disease find themselves having a healthier diet simply because the majority of food that is naturally gluten free, is also pretty healthy!
Unfortunately, this wasn’t much of a solution for me. My eating disorder meant that I was extremely limited in the foods I would eat. But the joy I felt when I got to the freezer section in Asda and saw they had gluten free chicken kievs was like no other.
As a newly diagnosed Coeliac it was always a nice surprise to find gluten free alternatives while shopping and that’s something that doesn’t go away! You will most likely always feel that way because there’s a lot of food that simply cannot and will not be gluten free.
It’s not just the free from aisle!
Make sure, when doing your shopping that you’re checking in places other than the free from aisle.
This is where your label reading comes into practice. There’s loads of food on the regular aisles that are ‘accidentally gluten free’. They don’t have any gluten containing ingredients but they’re not specifically made to be gluten free.
So it may be that you won’t have to give up all your favourite snacks!
It’s a great trick to have when you go to your local supermarket and find their free from aisle to be a bit lacking.
When checking labels, you’re looking mainly for ‘BROWS’ (barley, rye, oats, wheat and spelt). In the UK, brands are legally obligated to indicate if a product has any allergens in it so you’ll find that they’re shown in bold on the ingredients label.
Ensure you’re also checking for any ‘may contains’. While the product might not actually contain any allergens, this usually means that they’ve been at risk of cross contamination and could still cause symptoms!
Make sure you have your support network
One of the first things I did when I was diagnosed was turn to my auntie. She had been diagnosed about a year prior to me, so I knew she was my first port of call.
She was brilliant in being there for me and she recommended I join a ‘Coeliac Disease for Beginners’ group on Facebook. It was probably one of the best things I ever did.
It immediately made me realise I was not alone. There were loads of other people going through the same thing and look, they were surviving!
That was where I learned about how to look for BROWS (barley, rye, oats, wheat and spelt) on food packaging. An invaluable piece of information for the new Coeliac!
If you’ve just been diagnosed and you’re struggling, I would definitely recommend joining a similar group on Facebook or online. It’s a great way to find people that understand the feelings you’re having. Plus, there’s some brilliant tips shared on new gluten-free finds!
Another way I connected with the Coeliac community was through Instagram. I created a new instagram account (not necessary but I like to keep my feeds separate) and I followed all the Coeliac and gluten free accounts I could find.
I was blown away by the amount of people there, sharing their stories, their struggles and their tips for eating gluten free!
It really was a life saver. I knew that if I was having a bad day or I was frustrated at finding out my favourite treats were chock-full of gluten, I could head over to Instagram and there were people there that would understand and could relate to what I was saying. Even better, they usually were able to recommend a gluten free alternative!
Do your research
Before being diagnosed, I had heard of Coeliac Disease and I knew it had something to do with gluten but I didn’t really know much about it. So I took to Google in an effort to find out everything I could.
I highly recommend checking out Coeliac UK. They’re an amazing resource to find out tons of information about CD and that’s where I mainly got all my information to start with.
Other places I looked were at the websites of other bloggers. I simply typed ‘coeliac blog’ into the search bar and hoped for the best.
After learning all the facts and the medical information, I wanted to hear personally from someone who had Coeliac Disease. I wanted to know their thoughts, their experiences, and get some reassurance that it wasn’t going to be scary forever.
It was from doing this that I actually decided to start my own blog!
I found some great people out there with Coeliac who were sharing bits of their lives but what I mainly found were recipes. These are obviously extremely helpful when newly Coeliac and you’re looking for how to make your favourite meals gluten free. A little later, I spent hours poring over Becky Excell’s website!
Despite that, it just wasn’t quite what I was looking for at that time.
I wanted to hear about how they’d felt when they were diagnosed. What was their experience eating out with Celiac? How did they deal with all the negative feelings that come with the disease? Did they even feel like that? Was it just me? Did they struggle letting go of their old foods? Were they baffled when first reading food labels? Was anyone having the same questions and worries that I was having?
The answer is of course they were. They just weren’t writing about it.
And I totally understand why! As I’ve learned from researching blogging, people go online to find solutions to their problems. They want to know how to cook that gluten free lasagne. They want to know what gluten free goodies they can make at Christmas.
But I couldn’t get out of my head the thought of someone like me, who was looking for that personal account of being diagnosed with a life changing disease.
I wanted to make sure that there was something there for them. I wanted to let them know that they weren’t alone, that other people were thinking the same things as them. And to give them some insight into what life can be like with Coeliac Disease.
So that’s why I’m here! You’ll find in some of my other posts that I get into my experiences being newly diagnosed, some struggles I’ve had and some solutions that I’ve found for living with Coeliac Disease!
I am still early into my Coeliac journey and I’m still learning but I’m trying to make it as fun and positive as I can. That being said, I’ll be keeping it real and honest. So if you want to hear more about it, subscribe to my email list to be kept up to date with my future posts!
Can I live with Coeliac Disease?
Yes, you absolutely can.
It definitely seems terrifying and like life as you know it is falling down around you when you’re first diagnosed – or it did for me anyway! But I can personally assure you, it is not going to be as bad as you’re imagining.
You’ll find those gluten free alternatives, you’ll find out how amazing the community is and you’ll start to acclimatise.
And then it’ll be back to life as you know it – just minus the gluten!
If there’s any other questions you might have after being diagnosed with Coeliac Disease, leave a comment and I’ll help out any way I can!
You can also follow me on my socials. If you follow my Instagram (@theitchycoeliac) and check out people I’m following, you’ll find a whole world of people with Coeliac Disease so definitely go give some of them a follow too!
Or you can check out some of my other posts that might be able to give you some helpful insights!
