Thankfully I have never been fully glutened – by this I mean I’ve never eaten something not gluten-free. I’ve only been glutened through cross-contamination. Cross-contamination is a big issue for many coeliacs, it seems people – particularly those in the catering industry – don’t seem to have quite grasped the whole ‘I can’t eat any gluten’ concept. Don’t get me wrong, we’ve come across a few restaurants who take it seriously and genuinely try and do everything possible to minimise cross-contamination. But some restaurants just put ‘gluten-free’ food on the menu to appease the fad dieters. As industry standard there should be a different label for those safe for coeliacs, such as ‘coeliac-friendly’ food and then we wouldn’t waste our times at the ‘gluten-free’ restaurants.
I seem to be very sensitive to even the slightest ingestion of gluten. In the space of just four months, I was glutened twice and had to take time off work.
I’ve been diagnosed since April 2015 and I am very careful about washing my hands before I eat – always. I don’t let friends or some family cook for me through fear of lack of knowledge or habit (this includes putting the spoon down absentmindedly on the kitchen surface). I rarely eat out at restaurants and when I do I’m equipped with my portable gluten detector device, Nima.
Symptoms from coeliac to coeliac differ immensely. With some get the Dermatitis Hepiformis rash, to the overwhelming feeling of tiredness and, of course, the relatively common abdominal pains.
When I was glutened most recently, I asked for a blood test through my gastroenterologist for that day because I wanted to see if gluten was detected in my system, or whether I had additional problems maybe something like IBS. The results confirmed that gluten had somehow gotten into my body. I was relieved it wasn’t anything additional, of course, but It did make me wonder what it could have been.
Now that I knew for definite it was gluten causing those symptoms I could at least look at somehow managing my daily habits differently. So, I cordoned off my boyfriend’s good supplies even more so and I also bought a new keyboard for my desk in work. I pack it away every Friday because my desk has been used over the weekend as I have on occasion come in to find breadcrumbs on my keyboard and my desk. Annoying but now I have a solution.
What symptoms do I get?
Excruciating abdominal pain
I’m in so much pain I cry. I can’t stand up straight and the pain stays with my pretty constantly varying from painful to very painful for about 2-3 days.
I feel nauseous for about a week after and I have very little appetite. I am the one who cooks in our house and I feel so sick I struggle to prepare a meal because the thought of food makes me feel so ill I have to lie down.
Getting brain fog is also a common symptom of coeliac disease. I can’t think clearly and I struggle to keep my concentration. As I’m talking to someone I get muddled with my words – it’s the weirdest feeling.
I struggle with tiredness after being glutened. I do get B12 injections every 3 months as part of my diagnosis but after being glutened it’s like an overwhelming level of tiredness. I sometimes feel I could just fall asleep on the spot – and I am not someone who can just fall asleep anywhere!
It does worry me a little that these are my symptoms just from a small amount of cross-contamination… So I am going to continue being a scrutiniser of ingredients and packaging because I do not want to slip up and ever eat something that isn’t gluten-free. I wouldn’t like to think what would happen to my body.
What relieves the symptoms of being glutened?
I think it’s a lot of trial and error but there are a few things that are universal for settling the pain and discomfort of being glutened.
- Hot water bottles – my boyfriend, Ross, recently bought me a hot pack for the microwave but it comes with a velcro pouch so you can move around with it strapped to your body. This is good if you’re at work.
- Take a bath
- Lying down – lying on my stomach seems to ease the pain. The pain is still there when I get up but it helps give me a bit of a break from the constant pain
- Hot lemon water and water in general
- Peppermint tea
- Plain foods until you feel like you’ve got your appetite back – some people think fasting is best but you should consult your doctor if you’re thinking of this
- A lot of people find Buscopan can help with the gnawing feeling in your stomach and the pains – this doesn’t help me but hey, everyone’s different!
Most of the time the above are just coping mechanisms to ease the discomfort, they don’t usually help them go away completely. I’m afraid you just have to wait it out and hope it doesn’t last too long.
As soon as I feel the pain getting stronger and I know it’s a bad attack, I’ll usually hurry home from work and switch the electric blanket on in bed – the best thing we’ve bought, not only for cold nights but it actually helps soothe my stomach. So definitely look into this.
If you have any questions about coeliac disease or about being glutened, you can get in touch here.