My Coeliac Disease Story

I wrote most of this back in 2013 for Kevin's blog Gluten Free By The Sea for coeliac awareness week:

People always ask how long it took to get diagnosed- officially it took me 5 or 6 years, but looking back the signs were there a long time before that. I don’t have any family with Coeliac Disease, but my mum’s side of the family has a lot of allergies (including peanuts), intolerances and auto immune diseases (diabetes and thyroid problems).

When I was a baby I had soya milk as I was allergic to cow’s milk. I was also allergic to eggs. I grew out of that eventually but always had stomach problems if I overdid it on the cheese.

I was a vegetarian as a teenager (after an incident with corned beef hash, a painful memory to this day!), and very pale, tired and emotional. I had incredibly heavy periods, until eventually, age 16 and the day of our year 11 prom, I collapsed at school. I went on holiday to Spain with my family that summer and by the time I came home I was struggling to eat. Every time I ate more than a few mouthfuls I felt sick. I virtually gave up food, only eating when I didn’t have any choice in the matter. I couldn’t see the point of eating something that made me sick. I lost weight.

It only lasted a few months- once I realised size 8 clothes were falling off me I made myself start eating properly. My body didn’t react too well to that though, and I started taking laxatives to help. It felt like the only way to deal with my problem. I knew it was bad but I didn’t see the doctor. I stopped taking them eventually then the bouts of diarrhoea started.  It didn’t occur to me to go to the doctors in spite of all the (sometimes very) emergency trips to bathrooms!

When I was pregnant in 2003 blood tests showed I was anaemic. In 2005 I was tested for glandular fever, that was negative but I was anaemic again. At no point did I raise my stomach problems.

Eventually I went to the doctors in 2007. I didn’t go into as much detail as I should have- I was scared it was my fault for everything I’d put my body through in my late teens/early 20s. I was told that yes, I probably did have IBS but they’d do a couple of tests just to rule out anything more serious. A couple of weeks later IBS was confirmed. I was also anaemic – again.

I became depressed. I was fed up of feeling ill, always being tired but never being able to sleep, aching all the time and suffering with headaches. I hated my body and how it didn’t work how it was supposed to. I was given anti-depressants, sleeping tablets and iron tablets (well I was anaemic – again!) and sent on my way. The GP told me I obviously didn’t absorb iron properly and said I’d have to start eating meat. He didn’t spot this as a symptom of coeliac disease. So I gave up on my vegetarian diet in the hope I’d get better. I never got better, I just had periods of time where I was less ill than others, usually when I was on a “diet” and eating mostly naturally gluten free food, I just didn’t know it at the time.

Then summer 2012 happened.

I travel a lot for work so have a lot of time on trains living on packet sandwiches. I didn’t have the energy for exercise or eating properly- when I wasn’t at work I was asleep. My stomach was huge and it hurt to do anything other than lie in bed. I cried a lot then too. I had IBS, it was my fault, and I knew my bad diet and lack of routine was causing the attack.  Nobody knew how bad things had got for me even though there were times I bolted out the office or a meeting for the toilet.

A friend with IBD was worried though- she was adamant there was more to my bad summer than an IBS attack. I spent a couple of days in Manchester at a conference. The train journey home was agony and all I wanted to do was be sick. I made it home, just, and threw my bags in the house and literally crawled to bed in tears. By that point I couldn’t stand anymore, I couldn’t explain to anyone what was happening to me because I’d lost the ability to string a sentence together. I passed out on top of my bed then woke shortly afterwards crying in pain. I spent the next few hours locked in the bathroom.

My boyfriend persuaded me to go to the doctors. He looked back over my history and said there was no record of a test for coeliac disease and wanted me to have a blood test. I agreed and a week later I went back in to be told he was 99% certain I had it as he’d never seen such strong results before. I laughed and said thank you- I sort of knew what it was and knew it wasn’t my fault. It also meant there was a solution. I was really happy! I left with some leaflets and spent the next few days researching.

The next 6 weeks were awful. I couldn’t bare the fact I was poisoning myself at every meal. I worked short days because the urge to sleep was so strong and I was terrified it would hit on my hour drive home from the office. I couldn’t make decisions- choosing between beans or egg on toast had me in tears! I had constant headaches, back ache, nausea, bloating and was forever running to the bathroom.

The biopsy scared me, and when it was over they gave me a cup of tea and a biscuit. Good one NHS- a biscuit for someone with coeliac disease?!? I didn’t eat it, and haven’t knowingly eaten gluten since.

I was diagnosed on Friday 7th September 2012. I’ll never forget that day- I was desperate for the confirmation letter but it hadn’t arrived. I went to the doctors and they were able to confirm I had coeliac disease. I would be referred to a dietician and could now get gluten free food on prescription. I went home and cried. All weekend. Once I’d been gluten free for a few weeks dairy became my nemesis. It only affected my stomach but that was enough. I cut it all out on my dietician’s advice.

Then I got better. I don’t fall asleep all the time, I don’t have headaches (unless you count listening to arguing children!!), and I don’t have back ache or emergency bathroom trips. I finally feel like that big black cloud of depression, anxiety and panic attacks is gone. I’m…dare I say it…normal? I’m still struggling with bloating occasionally and haven’t worked out what it is that triggers it. I don’t see the dietician now (my local NHS trust only give you 2 appointments) so I’m a bit on my own trying to find solutions. The GP thinks it might “just be a bit of IBS” and that might be true, or it might be my body still recovering.

The biggest support for me has been the twitter community. There are no local coeliac support groups I could go to (the one I’ve been allocated is over an hour away) and coeliac UK say there isn’t the demand for one where I live. I have no “real” friends with coeliac disease so I turn to the twitter group when I have questions, or when I feel down about it all. There’s always someone there to help, offer advice based on their experience and generally make you feel like you’re not alone. So thank you to everyone who has helped me over the last six months!

Fast forward to 2017 and living gluten free is just a normal part of life- I'm used to asking all the questions in restaurants and making sure I'm super careful about things like cross contamination. Its second nature! The odd occasions I do get glutened are pretty horrible, the reaction seems to get worse the more time passes, but at least it only lasts a couple of days. My daughter has also been tested now and luckily for her she doesn't have it, or have the gene so there's no danger of her ever being diagnosed with coeliac disease!