The story of my coeliac diagnosis.
This is me in 2011 When I was diagnosed with coeliac disease. I was fatigued, and had lost a lot of weight.
When I was younger (up to the age of 30), I thought I ate pretty well….well, apart from the alcohol, and the chocolate, and the biscuits, and the cake! I would eat pasta, and potatoes, and some veggies and chicken, lots of bread and cheese, and sandwiches. Looking back, my diet wasn’t so great. But then my cooking skills were not so great either! I was more bothered about going out and having fun than learning to cook. I bumbled along with my ok-ish repertoire of food. Ate pretty much whatever I wanted, and didn’t really think about it too much. My health seemed to be OK and I didn’t really get ill all that often.
Then one day in May 2011 I felt ill. I was sick and running to the loo. It was after a take-away pizza, so I assumed I had some kind of food poisoning…. But it didn’t stop… So, then I figured it must be some kind of virus! A stomach bug of some sort. I kept running to the loo, and my stomach was like a balloon. Swollen and painful.
After a few weeks, I was losing weight rapidly, I was tired, my joints hurt and my ears were sensitive to noise. I kept running to the loo – 16 times a day! My stomach would swell and be so painful. I would lay on the sofa for hours, unable to go to work, or do anything. I struggled to leave the house at certain times of the day when I had my bouts of running to the loo. I would also get very angry, my mood swings were awful.
I went back to the doctors, who told me it was IBS. I kept losing weight, I looked terrible. I couldn’t get work because I was too ill. I had to struggle to the job centre every two weeks to sign on. It was literally luck that I could make it there and back.
At the time I had moved back to my mums’ place after leaving Manchester. She watched me getting more ill, and was very worried that it might be something bad. But she researched online and discovered Coeliac Disease. Coeliac Disease is an auto-immune disease where your body reacts badly to eating gluten, which is in wheat, rye and barley – think bread, cakes, pasta, gravies, sausages, biscuits, beer.
I went to the doctors with the request to test for coeliac disease. They said it was unlikely, but tested me anyway. The blood test results came back positive! My result was very high! Definitely Coeliac Disease.
The next step was to get booked in for an endoscopy, where they take a sample of your small intestine to see if it is being damaged by eating gluten. The catch being that you have to keep eating gluten to damage the lining of your small intestine. I was told to eat gluten every day for six weeks!!!
My pallor was dull, my eyes dull, I had dropped to under 8.5stone, . Being ill really does show in the face.
The Gluten Challenge
Knowing what was making me so incredibly ill, and having to eat it, was pure torture.. It’s literally like telling the doctor you have a headache, and they tell you to prove it by banging your head on the wall every day. It’s an archaic practice. But at the time I had no choice. I needed the gold standard test to prove I was coeliac.
I set about eating all the things I would never be able to eat again once I got the gold standard confirmation. My favourite sandwich from the sandwich shop Brown Betties in Nottingham, my last slice of cheese cake from the Cheesecake Shop… my last ever Twix, fillet of fish, dry roasted peanuts! If it was gluten based, I ate it, and felt super ill from it all. The outcome was so bad that it put me off eating any of it again anyway!
The six-week challenge made me really ill. It messed up my body so much, making me weaker and weaker, and more and more tired. I was suffering from severe fatigue. I could barely walk. I couldn’t leave the house much for needing the loo. At one point I ran to the loo 50 times in one day!
Then the date came for the endoscopy, and I went to the hospital in August to have a pipe put down my throat. I lay on the bed and the medical staff tried to put the pipe in, but I couldn’t swallow it. Epic fail on my part. My consultant said I would have to try again. I was terrified at the idea of having to eat gluten for another 6 weeks. But nope, this time it would only be 3 days! I had to wait until November. So, I ate gluten-free and my health improved for a time, I could ride my bike again, and do some things, although I still felt tired, and ran to the loo, it wasn’t as much. I could do some things.
November arrived and I ate gluten for three days… It turned me in to a monster! The mood swings and anger came back, as did the swollen stomach and the running to the loo. The tiredness hit me again full pelt. I had a temp job in an office at the time, but an angry outburst got me sacked. I couldn’t control my mood at all.
I went for the endoscopy, and once again I failed at swallowing the pipe. The consultant spoke with me and decided that because I clearly reacted so badly to eating gluten, and had the positive blood test, that they would sign me off as Coeliac without the endoscopy.
How infuriating! To go through all that pain and exhaustion. The thing is, the fatigue, the feeling ill, it didn’t stop instantly. It took me about a year to cut out all sources of gluten. I couldn’t work again, I was so fatigued, and still running to the loo.
By August 2012 I had a little energy, and my health was picking up a tiny bit.
I had decided to set up a gluten-free cake business, I would make a few cakes and be completely knackered from standing for a couple of hours. It was a very difficult time. I would do little bits of work, but need to rest so much to make up for it. I was limited in what I could do a social life, as well as working.
In all it took me about 4 years to recover from the gluten challenge and the damage it did to my body.
This is me in 2013. I still was not well, but I was improving. We were at The Fringe Festival in Edinburgh. This was the first time I had eaten out since my diagnosis and I was terrified of being glutened, so much so that I had cried before this picture was taken.
Having fatigue is debilitating. It makes everything so much harder. There's only so much you can do in the day before having to lay down.
I slowly built up my strength and did more things with my life, and I slowly did more with my business during this time, ran market stalls, pop-up kitchens, and baked to order. It was all in line with how my health was at the time. Nothing was easy.
In 2013 I started to get really dizzy and my hearing went weird, I would be in a room and unable to focus on what people were saying, or I would wobble when I walked, or struggle with my balance. I was also getting a runny nose. I noticed it happened after I ate a lot of cheese, so I tried cutting it out and I felt much better. Pretty much straight away.
Being ill caused me to focus on using food to help improve my health, I learnt how to cook healthier foods, eating more fruit and vegetables, and cutting out sugar, soya, and various other things. I immersed myself in food, cooking, reading medical journals online, reading other people’s stories, and speaking to customers on the stall about their food and health journey’s. Other people’s stories are so important to listen to, and I learn so much from how other people have dealt with their health. Food is such a big part of healing, and keeping well.
This is me in 2014, I had cut out gluten, sugar, and dairy. I felt better here than I had in 3 years. But despite appearances, I was still suffering from a level of fatigue.
Since my diagnosis with coeliac disease, food has become my life. It is what I think about, most of the time. It was the cause of my illness, and the cure for it.
Now, 12 years later, I no longer have fatigue, and I am so much healthier than before.
I know so many people see a coeliac diagnosis as the end. It is difficult adapting to a new diet, and there is so much to go without, but there is also so much to gain. There certainly was for me.
There is also another side to going gluten-free, and making changes to my diet that I haven’t mentioned yet, and that is the effect on my mental health. It was one of the best things that ever happened to me… But I will explain all of that in my next post!
Here's me in 2022 with James. I think it's clear to see the difference. It took a long time to get well, and I'm always concious of staying well. Obviously eating Gluten-Free, But doing my best to eat good food.
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