“And I’ll rise up, I’ll rise like the day.”

As it’s the end of Coeliac Awareness week 2018, I thought I’d share my diagnosis story. It starts back in 2005 when I was 17. I went to the doctor as every evening I would have a bloated and hard tummy and lots of wind. The bloating was so bad that trousers that normally fit me would need to be undone. I was diagnosed with IBS caused by anxiety and stress. I was offered one counselling session for the anxiety by the GP’s recommended counsellor, where we discussed many aspects of my life on a general level. I was offered no advice or treatment for the IBS. At this time in my life, I would be eating toast for breakfast, cookies in the college café, shop bought sandwiches for lunch and, at least once a week, take away pizza for dinner. My diet wasn’t discussed at the GP appointment.

17 years old with a bloated tummy

Fast forward to 2012, which is the next period that I remember my physical health affecting my day to day life. I was teaching in my first reception class after 4 years of university. The school was headed by an ex OFSTED inspector and was run like a military operation; I hated it and was very stressed and absolutely exhausted. I remember wondering how the other teachers were getting through each day without yawning all afternoon and brain fog causing them to forget important events or conversations. It would be no surprise to you to read that an undiagnosed autoimmune disease and an extremely highly pressured career do not go hand in hand, and I didn’t complete the school year.

After leaving my teaching job I began working as the deputy manager of a day nursery, and it was around this time that I had my first realisation that I needed to exercise and eat healthily! I started going to the gym and making soups to take to work for lunch. I researched how to put a healthy soup together and pearl barley kept coming up, so in it went. Every afternoon by 2pm, I looked around 6 months pregnant and I’d have to undo my trousers under my nursery uniform. I went back to the doctor about this and again it was put down to IBS caused by the stress of my job. I began to do yoga as soon as I got home from work every day to help with the stress, which (without going in to too much detail) would release the wind in my tummy. The yoga working to release symptoms reinforced the wrong diagnosis of IBS.

From 2013 to 2015, I went vegan. I didn’t mean to! I innocently picked up a diet booked called ‘Skinny Bitch’ and thought ‘That sounds like my kind of diet book!’ It wasn’t until half way through that I realised I was going vegan, however everything I had read in the book made sense and resonated with me, so I went for it. Looking back, this was the healthiest I had ever felt. I had energy and I didn’t feel bloated. By completely changing my diet to a plant-based diet, I had inadvertently cut down massively on the amount of gluten I was eating.

Eating pizza in Rome

In April 2015 my new husband and I honeymooned in Italy. We stayed in hotels in Rome, Florence, Venice and Lake Garda. Each morning began with the hotel buffet breakfast of cereals, croissants, toast, cheese and ham. My body wasn’t used to this, as since starting my vegan journey I religiously had a smoothie for breakfast every morning. Obviously, the rest of the day was spent eating pasta, pizza and tiramisu. Although our honeymoon was absolutely incredible (romantic and delicious!), I couldn’t understand why I couldn’t make it through the day without an afternoon nap. My husband wanted to continue exploring but everyday after lunch my energy levels dramatically dropped, and I just couldn’t continue until I’d had some shut eye. My husband was very patient with me, even though at the time we had no idea why I couldn’t make it through the day!

My sister and I pregnant at the same time. Where are my eyes?!

August 2015 brought the fantastic news that I was pregnant! What started of as an intention to have a vegan yoga-filled natural pregnancy and birth, ended with me craving anything with carbs or sugar, particularly mars bar milkshakes and bacon! By 40 weeks pregnant, after eating gluten in most meals, I was so swollen all over my body I could hardly move. My eyes were tiny little slits and my ankles and feet were balloons. My labour lasted 32 hours and my daughter was born two pounds lighter than was expected. Since diagnosis, I have found out that women with undiagnosed coeliac are more likely to have low birth weight babies. With the amount of blood tests, midwife/doctor appointments and hospital stays I had during and just after pregnancy, I feel very let down that the disease wasn’t picked up at this point.

After Miri was born, the swelling hung around for months and months. I cannot find the words to describe the physical and emotional exhaustion that I felt. Yes, I was tired from a long labour. Yes, I was tired from the throws of the fourth trimester. However, no matter how much I slept, I was running on empty. I could have a full nights sleep, with my husband doing the night feeds and the early morning feed, and I’d still be so exhausted that I couldn’t function. I couldn’t string sentences together, I forgot words, I couldn’t manage my time, I couldn’t remember things, and the main effect of my exhaustion was the emotional turmoil. As I was already running on empty, already only just coping, if I felt something had gone wrong I would hysterically cry. And once the tap was turned on, there was no turning it off; Until I had slept it off, I was crying! When Miri was 6 months old, I was diagnosed with post-natal depression, with a treatment of a gym subscription and cognitive behavioural therapy. Both of these activities helped me immensely, however I had started making a list of other physical oddities that I had started to notice: bumps on my hands, mouth sores, gas that would clear a room, joint pain in my knuckles and elbows, itchy flaky skin on my legs, and the ever-present anxiety and bloated tummy.

I took this list to my new GP in July 2017 and she sent me for a blood test, not telling me what I was being tested for. I received a phone a call with the news that the blood test had shown positive for the antibody that suggests coeliac disease, but I had to continue eating gluten until after an endoscopy. During the wait for the endoscopy, I spent every evening researching coeliac disease and I was convinced that I had it and that I’d had it for years. In November 2017, rather predictably by this point, the endoscopy showed flattened villi and confirmed that I am a coeliac.

Happy since diagnosis

Since diagnosis and giving up gluten, I can make it through the day without a nap and stay up past 10pm! I don’t crawl to the end of the day, in fact I am often surprised when my husband walks through the door at the end of day. I have started a new job at our local council, and my work life balance is working very well. One of the greatest changes is in my mental health. Although I am still an anxious person, I am no longer depressed and no longer let anxiety fill my brain. I am much clearer headed and rational and I’m now able to live intentionally, following my dreams and finding out who I truly am. I am so grateful for my diagnosis.

Are there similarities in your coeliac diagnosis or symptoms? If so, I’d love to hear from you.