The top 5 most frustrating things about living with Coeliac Disease.

Surprisingly, Coeliac Disease affects at least 1 in 100 people here in the UK making it not as uncommon as once thought. With lots of awareness, advice and gluten free products available, living with Coeliac Disease is manageable. 

However, it isn’t just a case of ‘Here’s some gluten free bread, you’re cured!’ of course. Despite gluten free influencers in the community (myself included) sharing the positives about being gluten free to help others live their best gluten free life, there are still a lot of negatives to living with it. 

I took to the gluten free community online to ask what difficulties and frustrations they still have, and give them an opportunity to vent, and here’s what the most common things were. 

1. Worrying about cross-contamination. 

Just one tiny crumb of gluten containing food can cause a reaction resulting in damage to the gut for someone with coeliac disease. So it’s understandable that this was one of the top answers from the online community.

Eating in a restaurant or at someone’s house can bring on a lot of worry and social difficulties about this. Especially if you plan on visiting a restaurant which is normally busy. It’s important to ask questions to your server, and find out what controls they have in place to ensure that the gluten free items on their menu are coeliac safe. 

It can be hard to explain the concept of cross-contamination to somebody who doesn’t live with coeliac disease. Switching the word ‘gluten’ to ‘poison’ and flipping the scenario around to the other person helps me explain it, but some people really struggle to understand it. 

2. Having a day out or holiday means you pre-plan everything, and take emergency food with you.

This is probably one thing every coeliac has done. Emailing or calling restaurants about options available, having a google or search on tripadvisor for places to safely eat, or asking a question in a friendly gluten free Facebook group. It never goes away. Being able to eat anywhere and everywhere pre-diagnosis is definitely something that is taken for granted. Being able to get a steak bake from Greggs, or a fresh doughnut from the sea front is only a dream to most of us!

3. Gluten free options appear to decrease, but supermarkets are always increasing their vegan food.

A LOT of people said this. It is frustrating to see a huge reduction in lots of gluten free products in the chiller and freezer sections of supermarkets, as well as cafe’s and takeaways (*cough* Dominos Pizza *cough*), especially when a lot of people rely on them. The demand for vegan food is always growing a lot more than the demand for gluten free food, and unfortunately it makes it feel like the gluten free options have to suffer. I hate to make this a coeliacs vs vegans post because they’re very different lifestyles, but it seems to trigger a lot of frustration to people. 

4. People think we are fussy and high maintenance.

Okay so the celebrities who jumped on the gluten free bandwagon a few years ago REALLY didn’t help the cause for people who actually need to follow a gluten free diet for medical reasons. And it’s hard to shift the stigma sometimes. The fact coeliacs have to ask questions about how our food has been prepared, take our own food to places, is not because they’re fussy, trying to be different etc… If coeliac disease is left untreated, it can lead to osteoporosis, bowel cancer and other issues such as infertility. This is why awareness and education about it is so important. 

5. The Price. 

Understandably this is the most common answer. Gluten free bread in the UK can cost anywhere from £1.50 to £3.50. Beans on toast once used to be a meal during times of austerity, but with coeliac disease, it’s now a luxury. And let’s not think about other items where the non-gf versions are only £1 etc… It can really push the food bill up if you rely on convenience food.

For low income families who have more than one coeliac, the increased food bill can be difficult unless you cook naturally gluten free foods from scratch. We can help others in the community less fortunate than us by donating a couple of essential gluten free items to a local food bank. 

What frustrates you the most about having coeliac disease? And do you have any tips to help the people who feel this way?

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