living with coeliac disease

What it’s really like to live with Coeliac disease

Living with Coeliac disease can be hard. For me the worst thing about having to live with Coeliac disease is not the way it limits your diet. I don’t find not eating gluten a problem at all now. The worst thing is when you do everything you possibly can to stay healthy and not get ill from gluten, and you still get ill.

If I lived in a bubble and only ate at home for my entire life I’m pretty sure I’d be OK. Our house is 100% gluten free and I make all the food I eat. I know as long as I eat what I have prepared at home I am safe. In real life though this isn’t always possible.

Food is at the centre of all socialising, seen as a treat, and the accepted thing to do for special occasions. This is a real problem for us Coeliacs. If it is someones¬† birthday, anniversary, or family get together it involves food. This is a lovely, as long as food isn’t your enemy. Yes there are lots of gluten free options these days, but the fact it is prepared in the same kitchen as gluten just means it isn’t worth the risk to me. I have become ill too many times after ‘gluten free’ options. Also being dairy free and on the AIP diet means that it is virtually impossible to get a meal anyway. Most of the time I would end up paying for a meal that I didn’t even want, but would have to have because it was the only option, and then being ill anyway. All this makes going 0ut for food a really stressful event instead of an enjoyable one.

There is always that pressure of feeling you have to go. I don’t want to be a burden and ruin things for everyone else when it comes to going for a meal, but why should I risk my health for one night/day because society says it’s the ‘normal’ sociable thing to do. I have given up so many foods alongside gluten to repair my gut and be healthy. I am so strict with what I eat and the environment it is prepared in, but I am expected to put all this aside for a few hours, because I cause a problem if not.

IT IS awful and sad not being able to join in eating alongside family and friends, but not as awful as how ill I feel if I get contaminated.

It was my Mum’s Birthday earlier this month and this meant a meal out with the family. I wanted to be there but I had been feeling better than I have ever felt in my life thanks to my diet, so I didn’t want to risk ruining this, and going back to square one. The thought of eating food out of my control was terrifying. I went to the meal but I didn’t eat and I really didn’t care. I was there with my family and that was all that mattered. The next morning I woke up and felt great. I was so glad I had made that choice.

Now lets fast forward to last weekend. A similar occasion, my Nieces 16th Birthday. This time a family BBQ. This was slightly different, a new BBQ had been bought so my gluten free food could go on first. Special salad and dishes were going to prepared so I could have things to eat. Real effort had been made to cater for me which was so lovely. I felt the pressure to conform and to join in and eat like everyone else. How could they understand that just eating in that environment is so scary for me. People eat with their hands, touching things and spreading gluten and crumbs, implements get mixed up, items jostling for position overlapping on tables. It sounds ridiculous to any normal person, but it is very real to someone with Coeliac disease.

I felt bad because of all the effort they had gone to. I felt I should join in and eat with everyone else as they had done all this especially because of me. so I decided to take some of my own food to make sure i’d be safe.

gluten free BBQ food take your own

I made my own chicken kebabs, lamb koftas, salad, dressing, dessert and even took my own ice! I had all bases covered.  Here I am with my cool box. This in itself is one of the annoying things about living with coeliac disease. Having to make and take your own food with you everywhere. While everyone else gets to just turn up and eat, you have to spend half the day making your own food from scratch.

gluten free BBQ food

The BBQ was lovely and it was really nice to be with all the family. But as anyone with Coeliac disease will know, when you are around gluten you can’t relax. It was everywhere with people eating it and touching things all around me. It is so frightening. I try my best to not look like an anxious freak and chill out. It genuinely terrifies me because I know how easily a microscopic speck can make me ill. I can see people looking at me thinking I’m over reacting when I move my things away from them. But unless you have Coeliac disease you can’t understand how I feel when I get ill from gluten.

The next day I woke up and I knew.

how it feels to have coeliac disease


I had somehow been glutened. I had the tell tale stomach pain, that raw, sore inside feeling like nothing else, bloating and felt sick. This week I have felt constantly nauseous, had brain fog, been irritable, moody, depressed, got mouth ulcers, sore lips and have unbelievable body aches and fatigue.  (Read more about getting glutened here).

Here we go again. I am now more determined than ever not to put myself in situations where I could get ill. IT IS NOT WORTH IT.

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