For the last 4-5 weeks, my body has been kind of attacking itself.
I’m 99% sure I have coeliac disease, but I’ve never been formally diagnosed with it.
I saw my doctor about this a few months ago, and he confirmed what I already knew: I need to start eating gluten again for 6 weeks, before I can be tested for coeliac disease.
I put this off for a few months, but now I’m doing my 6 weeks of gluten and I feel rough.
Let’s go back to the start.
My mum was diagnosed with coeliac disease when I was 10. She was a teacher, and would always be very unwell and exhausted by the end of a school term, until she got the diagnosis and got better.
Coeliac disease is an autoimmune disease where gluten causes your immune system to attack your digestive system.
If it’s undiagnosed and you eat gluten, you have ongoing symptoms like:
- stomach cramps
- mouth ulcers
It can also lead to complications like osteoporosis, neurological problems and increased risk of bowel cancer if untreated.
I remember being worried about my mum when she first got this diagnosis, back in the 1990s, as no one seemed to have heard of it. No one had heard of gluten either.
After getting the diagnosis, she went to the supermarket in our small town and came back, completely dispirited, as there was nothing that was gluten free.
I remember these strange loaves of bread the chemist used to order in for her – they were yellow, small cuboids that weighed a tonne.
However, once she got used to it, she was happy being a coeliac. She thought she was lucky compared to people with diabetes, who had to worry about their blood sugar and insulin, or people with other illnesses, when all she had to do was change her diet.
Occasionally she accidentally eats something that has been contaminated with gluten and is violently ill. Things like her bone density get checked every so often.
If someone has a close family member who is a coeliac, their chance of being a coeliac increases from 1% to 10%.
I started having digestive problems when I was about 16. I would vomit whenever I was even slightly nervous. I felt sick a lot and always had diarrhoea. I was also anaemic.
The thing was, it never occurred to me that I might be a coeliac too, because I developed anorexia around that time. I thought all my digestive symptoms were part of my eating disorder.
I now think I was developing coeliac symptoms when I was 16, and the nausea and loss of appetite paved the way for my eating disorder.
Throughout my late teens and twenties, whenever I went through a stressful time, my nausea would get worse and I would lose my appetite and lose a lot of weight. Then I’d get confused about the weight loss because of my eating problems.
I think it was towards the end of my 20s that it clicked that I had all the symptoms of coeliac disease, plus the family history.
At the time, I was registered with a GP surgery that wasn’t very good. I didn’t go to the doctors that often, but whenever I did, I felt rushed out of their room before the time was up and fobbed off, not listened to.
On the rare occasion that I thought, Wow, they were unusually helpful that time, it would turn out to be a locum or a trainee.
When I went to ask about being a coeliac, they said they don’t do the test (they do). They said that I don’t need to be tested for it anyway – I can just cut out gluten and if I feel better, I probably do have it and all that’s all I need to know.
I knew that wasn’t correct – if someone is a coeliac, it’s important to be diagnosed, because there complications that need to be monitored for.
Because it’s quite serious, the NICE Guidelines say that anyone who has the kind of digestive symptoms I have should be offered the coeliac blood test. Also, anyone who has no symptoms but has a close relative who is a coeliac should also be offered the test.
I went back and pushed, and this time I managed to get them to do the coeliac blood test.
They test for two antibodies that your immune system produces if you are a coeliac. When the results came back, she said she was going to refer me to a specialist.
The test results showed that one of the antibodies they tested for was high, but the other one was in the normal range. Because it was inconclusive, she was going to send me to see a specialist.
When I heard the results, I felt like it was a bit of a shock, but also that it wasn’t surprising. I felt relieved that what I had thought for a while seemed more likely to be true, although it wasn’t certain yet.
However, she phoned me back a few days later and said that after speaking to her supervisor in the GP surgery, she wasn’t going to send me to see a specialist after all.
Since then, I’ve done more research and found that the blood test which they had done, for coeliac disease, isn’t completely reliable. It picks up about 90% of coeliacs, but about 10% do have coeliac disease but their bodies don’t produce those specific anti-bodies.
The guidelines say that if there is an inconclusive blood test, the person should be referred to a specialist so they can investigate further.
I gave up at this point.
A while later, I was staying with my parents, and talking about how I thought I was a coeliac but got nowhere when I tried to see my GP about it.
My mum suggested I cut out gluten for a while and see what happened.
I knew at the time that this went against the advice – until you’ve got the diagnosis, you should continue eating gluten. The blood test and even an endoscopy or biopsy can only pick up coeliac disease if you’re currently eating gluten.
If you cut it out, your digestive system heals and there’s nothing for a specialist to see, and no way of knowing if you have it or not.
However, I did it anyway.
Within two weeks of cutting out gluten, I felt completely different.
I had had diarrhoea for my whole life, and suddenly I thought, Oh! This is what normal poos are like!
I suddenly realised how exhausted and nauseous I had been feeling for years, when it finally lifted.
My body shape changed in two weeks. I had always thought I was just someone who had a disproportionately big fat stomach, whereas the rest of my body was quite skinny. My whole wardrobe was constructed around disguising my big stomach.
Suddenly, my stomach became a lot flatter.
Also, weirdly, my breasts went up by about 3 cup sizes. I had heard of people putting on weight when they realise they are coeliac and cut out gluten, but for me, that only seemed to happen with my breasts!
I felt so much better, because if you’re coeliac but eating gluten, as your digestive system gets attacked by your immune system, it means you don’t absorb nutrients, like iron, or even fat properly.
For a while, I was too casual, just cutting out things I knew for certain had gluten in (anything made from wheat, barley or rye), but I found my symptoms came and went randomly.
Then my mum told me how many things have gluten in, which you wouldn’t expect, such as a lot of crisps, which they put wheat flour on to make them crunchier, and some sweets.
I started properly studying the labels of everything I bought.
I still thought it was fine to eat things that said “may contain gluten” if none of the ingredients were actual gluten. I thought the manufacturer was just being overcautious.
But still, I found my symptoms would fluctuate randomly.
Then I cut out things which have no gluten in but are made in the same factory where there is a lot of gluten, and within a week I felt even better than I had before.
When I ate them again, I got a churning, bloated stomach and diarrhoea.
Now, I know if I eat something that may have been slightly contaminated with gluten, it takes about two weeks to feel back to my usual self.
Within about 30 minutes, my stomach churns and gets noisy, and I get bad diarrhoea. My stomach swells up like I’m 6 months pregnant. I get terrible, painful mouth ulcers over the next week. I feel exhausted and have ‘brain fog’ for a couple of weeks, where I get words and numbers mixed up.
When I got really ill in Paris, I had eaten an omelette which I think had been cooked in a pan which had gluten in. I had stomach pains for the next few days.
So, I went to see my GP in June, and explained the situation.
Since I bought my flat and moved to a different part of London, I changed GP surgery and they are so much better here. They are so helpful and thorough.
I said to my new GP that I thought it was a good idea to be properly diagnosed with coeliac disease if I do have it, but I knew I would have to eat gluten and feel ill for 6 weeks.
“Is it worth it, if I’m going to feel so ill?” I asked.
My GP said he thought it was worth it.
“It’s important to know, because it might affect the treatment we give you for other illnesses you might get in the future.”
(It was so different to the response I got in my old GP surgery!)
The plan was then for me to eat gluten for 6 weeks, then come back and have the blood test again.
If it is inconclusive again, I can be referred to a specialist (which would mean eating gluten again until I see the specialist).
However, I didn’t do it straight away. I kept putting it off, as I knew it would have such an impact.
I wanted to wait until I was back on ‘green’ on our sickness monitoring system at work (I was on ‘red’ after having laryngitis and then flu last year), in case I needed to have any time off sick.
Then, when I was feeling really anxious and struggling with all the trauma on my caseload at work, the thought of getting ill on purpose didn’t seem appealing.
Then, I wanted to wait until the holiday seeing my brother was over.
So, 5 weeks ago, I ate a Kinder Bueno bar for the first time in years. Then I had some normal toast and cereal (instead of gluten-free).
It was surprising actually – whereas, when I’ve just been contaminated with a tiny amount of gluten, I can feel the symptoms within less than an hour, when I had a lot more gluten in one go, it affected me a bit differently.
My stomach quickly felt enormous, but whereas it normally feels like a fireworks display is going on inside when I have gluten, this time it felt rock solid.
Over the next couple of days, I felt worse and worse. I feel nauseous most of the time, I’ve had headaches and I feel exhausted. I struggle to type at work as I get letters jumbled up. I think I have felt a bit more low than usual as well.
I can’t stop burping and farting either!
My friend Faith stayed over one night, and I felt so gassy, my anus was putting in serious overtime trying to keep it all in.
When we were washing up, I accidentally farted really loudly, but I think I got away with it. It was quite an aquatic-sounding one, so I hoped she just thought it was a washing up sound.
I’ve been trying to embrace eating all the food I haven’t been able to have for 2 years, since I cut out gluten.
The best thing is going out for dinner and not having to do The Speech about dietary requirements.
But I can’t wait to going back to gluten free and feeling better again.