Coeliac Diagnosis – Is It Worth It?
Coeliac Diagnosis – Is It Worth It?
Coeliac disease is a condition that can significantly impact a person’s life. According to Coeliac UK, 1 in 100 people have coeliac disease, but only 36% are diagnosed, leaving an estimated 450,000 people, in the UK alone, suffering with unexplained symptoms.
For many, the journey to diagnosis is a tricky one. For a person to be diagnosed with coeliac disease, they must consume gluten with at least one meal per day for 6 weeks prior to the test to receive accurate results. We know that coeliac disease can cause symptoms such as vomiting, stomach cramps, fatigue, and anaemia, which raises the question - is getting the diagnosis worth reintroducing gluten to the diet?
We sat down with our very own Darina who believes she may have coeliac disease but is hesitant to get tested due to the uncomfortable requirements.
Hey Darina! How are you?
Hey guys. I’m doing well thanks. The sun is shining today so I’m happy.
(Same, Darina, same)
Please tell us a little bit about yourself.
I am an Assistant Brand Manager at Sarsons, which is part of the same parent company as ZENB, and I’ve been part of the team for over two years now. Outside of work, I love to dance, especially contemporary. I’m a pretty active person; I play tennis and take gym classes a few times a week.
I love to travel when I can. Exploring new cultures is something in life I really enjoy – it’s so inspiring!
I’ve been gluten-free for the past four years now, and you wouldn’t believe how much cutting out gluten changed my life; I feel like a totally different person!
When did you first start to suspect you had issues with gluten?
It was a good few years ago now. I was suffering from frequent, excruciating stomach cramps, and severe acne. Initially, neither me nor my doctor thought of gluten. I tried lots of different medications for the acne, but none of them had any effect, which I remember thinking was weird at the time.
There was one day where I went to the GP and my usual doctor was away, so I saw a different one. This doctor suggested that the issue could be my diet, so they recommended that I cut out alcohol, sugar, and gluten from my diet. It was then that something clicked, and I was almost certain that gluten was the problem.
How did the symptoms affect your day-to-day life?
When the symptoms first started, I was still in high school. I remember the stomach cramps being so bad that I used to skip classes because I physically couldn’t sit through the pain.
It became worse when I started work, because you can’t skip meetings the way you can skip classes at school, so I’d have to sit through the pain. It was horrible.
I remember also feeling anxious because I didn’t know what was causing the symptoms, and I desperately wanted to find a solution.
That sounds challenging. What changes did you make after experiencing the symptoms?
Well, I mentioned earlier that one day my usual doctor was away and the doctor I saw instead recommended I cut out sugar, alcohol, and gluten for a month.
After the month was up, my symptoms were completely gone. I’d spent that month thinking back over the years and had started to piece together the puzzle that gluten was the issue. I was confident that I could reintroduce sugar and alcohol without a problem, and I was right.
After experiencing a month without stomach cramps and seeing my acne disappear, I decided to stick with the gluten free diet. All my flat mates at the time went gluten free with me out of solidarity which was wonderful of them!
There have been a couple of times where I’ve been desperate for a slice of fresh sourdough or a bite of pizza, and I’ve given in to the temptation. Almost immediately, I feel the stomach cramps coming back and I start to bloat. I also feel how it affects my energy levels and mood now, which was something I couldn’t recognise back when I was eating gluten normally.
Have you ever tried to get diagnosed for coeliac disease?
I have tried once, but it went horribly wrong. I went to a private clinic and paid for the test, but it came back negative. I didn’t realise until afterwards that you need to be eating gluten for the test to be accurate. I hadn’t eaten gluten for three years at that point so no wonder it came back negative!
I do still think about trying again but dislike the thought of having to reintroduce gluten for so long. If there was a test that didn’t require eating gluten, I’d prefer that. It’s confusing not knowing for sure if it’s coeliac disease, but for now, I avoid gluten entirely to be safe.
Finally, before we let you get back to your desk, what’s your favourite ZENB product and why?
Oh, that’s a tricky one! I do love the spaghetti. It cooks fast which is helpful for quick lunches between meetings, and of course it means I can eat good pasta without a reaction.
Although saying that, I did try the noodles for the first time recently and loved them. Maybe that’s a strong contender for favourite.
DIAGNOSIS
For many individuals suspecting they have coeliac disease, the path to an official diagnosis can be a challenging one. Darina’s experience highlights a significant issue: the need to reintroduce gluten into the diet to obtain an accurate diagnosis. This requirement often discourages people from getting the test and receiving an official diagnosis.
In Darina’s case, cutting out gluten drastically improved her health, and despite the absence of a diagnosis, she continues to avoid gluten to maintain her well-being. The convenience of living in a city like London, where gluten-free options are plentiful, has made this lifestyle choice more manageable. However, the uncertainty of not having a definitive diagnosis remains a concern for her.
Here at ZENB, we recently carried out research that showed that 71% of Brits sympathise with coeliacs and recognise how difficult it must be to deal with. They see the negative emotions that come as a result of their condition, like anxiety, stress and frustration.
We also found that over half of us believe that more information and support is needed around managing coeliac disease and catering to coeliacs.
The good news is, that things are improving. There are more options available that are perfect for coeliacs, and people like Darina who suspect they made be coeliac, and those living around them – like Darina’s kind flat mates.
Our range of products including our pasta is recognised by nutritionists and chefs as a great gluten free option due to its taste, texture, and nutritional profile; being high in protein, high in fibre, and a source of iron.
Head over to this page to download our Gauge on Gluten Report:
https://zenb.co.uk/pages/coeliac-awareness-month
Our ZENB pasta is made from 100% yellow peas, making it naturally gluten free, high in protein and fibre, and a good source of multiple minerals. Plus, it’s delicious and achieves the perfect al dente texture every single time! The perfect mealtime solution for the whole family to enjoy!
https://zenb.co.uk/collections/gluten-free-pasta