I can’t say when the symptoms started: I’ve always battled with my weight, toilet habits (apologies if TMI, but us Coeliacs tend to over-share in that department) and would often sit chewing and struggling with my food, for ages, as a child.
Maybe those were early signs, maybe they weren’t.
The lightbulb moment
Back in 2006, I was feeling lethargic and bloated, among other symptoms, but I put this down to stress of planning a wedding later that summer and juggling work, a new home and my degree. It was only when I happened to watch ITV’s This Morning that I had a lightbulb moment!
The symptoms Dr. Chris talked of were exactly how I had been feeling:
- Upset stomach, often severe
- persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
- stomach pain, cramping and bloating
- Anaemia caused by iron deficiency
- Tiredness and feeling lethargic
- Sometimes dizzy spells or lack of balance
At that point I was certain that Coeliac Disease was what was up with me. The next battle was getting the diagnosis.
Kyli vs. Drs – the battle for diagnosis
I went to my local GP and explained the situation. They offered at least 5 blood tests… but not the one for Coeliac Disease. After much pleading on my behalf, they finally agreed to add this to the list of tests. But, they emphasised that it would be very unlikely to come back positive.
I’ve subsequently read that a number of people have had similar issues getting the tests needed to diagnose Coeliac… I’m hoping that since my diagnosis, with the raise in awareness, that this has now changed.
I didn’t get the blood test results till after my wedding, in June that year. Shame really as I couldn’t fully enjoy the delicious hog roast rolls we had… few bites and I felt bloated. But I knew that to get the right diagnosis you had to keep on eating as normal – a hard task when you know it’s making you ill! They were positive for Coeliac Disease, just needing confirmation and assessment of the damage via endoscopy.
It was September by the time I got an appointment to meet the Gastroenterology team at the hospital and have my endoscopy and gut biopsy. Yes, this is as unpleasant as it sounds, but necessary to get a proper diagnosis. Despite, wanting to be put under anethestic, the staff convinced me to have the throat spray, something I’d change if I was having it done again. I was aware of all the pushing, pulling… and the wind!
If you think that was disclosure, Actress, Caroline Quentin has bravely documented her journey to diagnosis on video.
My endoscopy and biopsy results came back confirming my positive diagnosis of Coeliac Disease. My gut had been damaged by eating gluten and a lifetime on a gluten free diet was the cure.
I had mixed feelings, I was happy to finally get to the bottom of what was wrong, frustrated that the Drs hadn’t listened to me from the start, and anxious about what the future had in store – I mean, what was I going to eat?!
The road to recovery
I counted my lucky stars for Coeliac UK. Their advice helped me through the early years of living gluten free – what I could and couldn’t eat, tips and tricks for eating out, etc. Their Food and Drink directory simplified my weekly shop. They also sent vouchers to try and taste gluten free products so that I could find the ones I liked the best.
It hasn’t been without its ups and downs – a reduction in invites over or out for meals by friends and family that don’t feel they can cater for you, slip ups, cravings, feelings of deprivation or unfairness…. but it has become a way of life. It is part of me and I don’t ever want to go back to feeling how I did before – The benefits, out weigh the costs.
I have still recently been accidently ‘glutened’ and this will continue to happen, but as my knowledge and experience has grown, and the foodservice and catering industries get even more clued up, this is happening less and less.
I get frustrated when people see gluten free as a trend… for some it is, but for many it isn’t. I hope this doesn’t make people blasé about cross-contamination, etc. but instead help raise the profile for the demand for free from food.
I am a Mum of two little girls. Despite both having their bloods checked for Coeliac Disease as babies and my youngest living gluten free for her first year and a half (or so), thanks to an inconclusive test and gastro symptoms, they can both luckily enjoy a ‘normal’ diet.
Crying over lack of milk
As well as having Coeliac Disease, back in 2015 I found that lactose was causing me issues. Despite a blood test and occasionally re-sampling dairy produce, I still can’t tolerate it. I’ve had to make the decision to restrict my diet further – after all, cutting it out is much favourable to feeling poorly.
My free from future
As you can imagine, being gluten and lactose free adds its challenges to dining out, shopping, cooking and travel. At home, I think I’ve just about got there – the rest is work in progress!