One of the most interesting things about coeliac disease is the multitude of symptoms and the unending variation in how people were diagnosed. Everyone has their own story and tribulations. This is mine! If you’d like to know more about me and the blog generally, please visit my ‘About Me‘ page.
I know I didn’t have coeliac before puberty, because I was definitely not a ‘failure to thrive’ child! I was always in the back row of class photos through primary school, and have been the same height since around the age of 11. Unfortunately that height is 5’4 so I was soon relegated to the front rows.
It is difficult now to know what triggered my coeliac disease or when exactly I started showing symptoms. There are two things that might have caused it: puberty or glandular fever (aka mono).
During my teenage years I was ill a lot and was constantly in need of sleep. I suffered from depression and was diagnosed with anaemia for a few years, both coeliac symptoms. However it is impossible to know if these were just ‘normal teenage growing pains’ or a sign of coeliac disease. Certainly no doctor thought to test me for it at this time!
The second possible trigger was a bad case of glandular fever during my first year at university. I probably caught it from my sister at Christmas, but was tested before returning to uni and told it was negative. Fast forward two terms of exhaustion, and two weeks of intensive internships, before I went back to the doctor to be told I’d had glandular fever for over six months. Being in my first year at university I had not necessarily been treating my health as well as I could have been anyway, which just exacerbated the effects of the glandular fever. In the end I was in bed for 3 months over the summer and spent another year exhausted.
It is hard to differentiate the exhaustion caused by illness and that caused by coeliac disease. I never fully recovered from the glandular fever and the years leading up to my diagnosis seem a bit of a haze of tiredness and brain fog. But I don’t know when these were the symptoms of glandular fever, and when they were of coeliac!
I also spent the 4.5 years between glandular fever and my diagnosis at university, first as an undergraduate then through masters and into my PhD. I attributed most of my tiredness and digestive problems to being a student, because everyone didn’t get enough sleep and didn’t eat right. Even when I bloated enough to look 5 months pregnant I assumed this was normal.
Things finally came to a head in January of my second year of PhD. Throughout this entire period I was receiving yearly physicals through my private healthcare in the USA. My doctor had flagged up Vitamin B12 deficiencies for a number of years but never asked about other possible symptoms or ran a coeliac blood test. (After diagnosis I discovered this was because I hadn’t had bad gastro problems, so my insurance wouldn’t have covered the test. I informed her that I would have happily paid for the 3-4 years of extra health if she’d ever given me the option.) I assumed that the NHS was unlikely to give out vitamin jabs when multi-vitamins were available so had never followed up in the UK. However at this time I was living with a housemate who was a fantastic baker and I decided to do more baking of my own. Within a few weeks I was on the couch most days unable to concentrate or wake up. I read about B12 anaemia and discovered that the NHS would give some jabs, so decided to go to my GP and try my luck.
When I arrived at my GP and explained that I needed B12 jabs he, very fortunately, decided to run a full set of bloods to rule out anything else. After a quite traumatic blood-taking (photo at bottom if you’re not squeamish!) I arrived back a week later to hear the results.
‘Well, your B12 is low but not horrible. But you have coeliac disease.’
See Part Two for the journey from diagnosis to endoscopy! (Coming soon)
This post was written for Coeliac Awareness Week 2015. If you think you have any symptoms of coeliac disease (including fatigue, bloating, ‘brain fog’, depression, gastro unrest) please visit https://www.isitcoeliacdisease.org.uk to take the self-assessment.
WARNING: Photo of traumatic blood-taking