My Do's and Don'ts of Coeliac

My Do's and Don'ts of Coeliac

We all need hints and tips, especially when just diagnosed, it has been five years since I first went gluten free so thought I would share some of the tips I have learnt over the years that may help you, whether you are just diagnosed Coeliac, struggling or just want to learn more.

Posted On: 10th June 2019
Last updated on: 10th June 2019
Tagged with: Blood Test, Coeliac, Diagnosis, Eating Out, Gastroscopy, Gluten Free, Shopping, Supermarkets, Tips

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5 years today I had the blood test for Coeliac, that means 5 years tomorrow I went gluten free, yes it was the worse thing I could do, but no one told me not to stop eating gluten and I was sick of being ill, so I stopped. (Read more about my story in this blog).

Since that first day being gluten free so many things have changed in terms of free from. I still remember that first day of being gluten free, I walked into Sainsburys as then that was the only supermarket that did a fair range of gluten free and bought a gluten free loaf, some pasta and a pack of biscuits, except knowing wheat contained gluten I was fairly blind to all the changes I would need to make. Most days it doesn't bother me, but I have those days when I wish I could eat a normal loaf (it is normal to stand in the bakery aisle, just sniffing the air right?)

Over the years I have picked up so many hints and tips, sifted through the myths and rubbish surrounding gluten free. If you are new to being Coeliac these days it is an absolute mine field out there starting, knowing the do's and don'ts. I honestly can see why people find it so hard adjusting to the diet change. I literally walked in a supermarket bought a loaf and from there learnt what I needed to, if I was diagnosed now...I wouldn't know where to start, with the amount in the free from aisles labelled gluten free that you can buy out of the free from aisle, it's so confusing.

So, from everything I have learnt in the last 5 years, these are my Do's and Don'ts of being Coeliac, adapting to living gluten free, being diagnosed and everything else between.

Diagnosis
Ok, yes going through the early stages feels like...

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So here's some do's and don'ts for that tricky time.

Do eat as much gluten as you can before diagnosis
Definitely, eat as much as you can, try and have it at each meal, when I was tested I was eating probably the equivalent of one slice of bread a day and it wasn't enough. If you are potentially not going to be able to eat some fave foods again, why not have a proper vanilla slice, a crusty cob or whatever you are likely to miss, enjoy it why you can and make sure you get enough gluten in you for the test, two birds, one stone.

Don't stop eating gluten after the blood test
The blood test isn't the deciding factor, the gastroscopy is, it will be a few weeks before the results are in from the blood tests but don't stop eating gluten, you will more than likely need to follow up with a gastroscope and if the damage isn't there, you are not getting that diagnosis, so keep eating, no matter how ill you feel keep going, it will be worth it when they confirm it is Coeliac.

Do research on Coeliac
Soak up all the information you can find on Coeliac, if it's an unexpected diagnosis you will find it harder to adapt but understanding what it is all about will help you understand you can absolutely live life to the full. Make sure you know what gluten is found in and and what foods to avoid.

It's fine to be upset about your diagnosis
Ok, not a Do as such, I'm not saying you NEED to get upset about diagnosis but if you do, it is FINE, in a sense it's kind of a grief, you're losing something everyone else takes for granted, especially if cream cakes or bread are your vice. It's fine to mourn the loss of the goodies but don't let it eat you up, there's plenty of alternatives to enjoy these days.

Don't be sucked into "it's a fad diet"
It's not a fad diet when you are Coeliac, no we can't just have a bit occasionally, no we won't get desensitised to it and no, it is not going to make you lose weight, switching to gluten free products (the manufactured kind) actually usually results in eating more salt and sugar, so no not healthier. The only time a gluten free diet may work as a weight loss plan is cutting gluten and only eating fresh foods not processed. Coeliac is not a fad, it is a major lifestyle change for life.

Don't believe in miracle pills
There is no pill that will help a Coeliac. OK, there may be one in production somewhere but at the moment there is no such miracle pill, there are a few floating around that claim to help you digest gluten but read closely and these are not suitable for Coeliacs.

Shopping

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^^ This is you once you figure out how to shop! Here's some tips on gluten free shopping

Do shop around
These days all the supermarkets do good ranges of gluten free. Don't stick to one supermarket, all of them offer different things gluten free, so if you want something specific you may find one shop has it another doesn't, don't be afraid to shop at multiple places.

Don't assume, always check
Always check the ingredients, even in the free from aisle, free from doesn't mean everything is gluten free, it can be free from egg, free from nuts etc, so always double check the packets. "Gluten Free" is a legally protected term so if this is printed on a product you can assume it is Coeliac safe but it's always worth double checking the ingredients to be sure.

Don't just stick to the free from aisle
Shop all over the store, not just the free from aisle, ok bread you are pretty much always going to head there for but you don't need to get the likes of mayo or ketchup from there, ones in the regular aisles are gluten free and almost certainly cheaper, so make sure to check around, no point in buying a "special" item when you can get a regular product and save money. Sometimes you even find shocking items you wouldn't expect to be gluten free, Twix chocolate spread for example is gluten free as are Heinz Beans and Sausage!

Do learn to read labels
You need to be able to understand how to read allergens on ingredients, know this and you are set. Usually allergens are bold, they need to stand out, if an allergen in highlighted and you know if it a gluten containing one, you know to leave well alone. All other allergens will be highlighted to so you do need to learn which refer to dairy, nuts, etc and not gluten, but as soon as you have that nailed, you're good.

Do avoid may contain warnings
There's many Coeliacs who don't avoid them but to me it's a game of Russian Roulette, you just don't know if one item will be fine and the next, of the same thing, not. It's basically hit and miss of if you are going to experience cross contamination. So to me, they are a big no no, the warning is there for a reason. You wouldn't ignore "danger, may be poisonous" so what's the difference?

Do get excited about new products
Buy an overpriced new product, if you like it shout about it to everyone, including the place you had it from, if they know a product is loved the more likely they will keep it on the shelves when it comes to refreshing the range. This also works the other way, if you think a product isn't right, tell them, things can't be improved without feedback.

Eating Out

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I know the feeling when you find a place that caters super well...here's some tips to eating out

Don't avoid eating out
Just because you are Coeliac doesn't mean you should avoid going a restaurant or even eating with friends. There are loads of places which can cater, yes it's a bit harder but there is absolutely no reason you can't eat out.

Do ask questions wherever you go
Always ask questions to the wait staff, manager, chef, whoever wants to listen to you, make sure you are comfortable that you aren't going to get contaminated, ask about cross contamination, if they offer chips ask if it is a dedicated fryer. Don't be afraid to ask questions.

Do research eateries online
Nothing wrong with finding out where to go before hand, I have a large list of places to eat but also check the likes of trip advisor. Look online for reviews, menus, any info you can find. It does help turning up knowing somewhere can cater for you without risking having to walk out because they are clueless. There is nothing wrong with ringing in advance to see if somewhere can cater either.

Don't be tricked into being told something is safe when it isn't.
Word of warning, some places will try and say "oh we use the same fryer but it's fine" or "no we don't use separate butter but a crumb will be ok". No and no, understand what you need and don't let places try and tell you otherwise, you know what can harm you, if they do try and palm you off saying they can cater when they can't, then leave.

Do teach family and friends about Coeliac
Nothing wrong with giving relatives and friends a bit of an education, help them understand what you need, if they still don't get it and want to cook for you, don't be afraid to eat before you go or take your own, generally people will understand, you will always get one that takes offence however if you are not confident in them it is you that is going to be ill, not them!

Other tips

Do learn to cook for yourself
Learn to cook, you can't go wrong, you are always going to have food you know is safe, fresh and better than any ready meal.

Don't go deep cleaning the kitchen every day
Really, some go to far, do you really need to wash glutened plates separate and use separate dish clothes. Not really, using separate chopping boards and toasters, yes but learn to know what is a step to far. You can use the same water to wash all pots.

I hope some of these tips help you, you really do learn as you go through the years, there is no doubt so much more I have missed, what are some of your top tips whether for newly diagnosed or even those been living gluten free for years?

Your Comments

Thank you so much for writing this blog. I don't need to! as I have found exactly the same issues as you. My main concern,highlighted by you, is the lack of knowledge so many restaurant show,and I know it must be difficult with part time staff but I really believe that here in the UK, it should be a regulation that at least one person in the restaurant at any one time, should have the required knowledge to prevent customers having reactions or even dying from the lack of care by a restaurant. Thank you so much once again.

Janet Morris - 27th October 2019

Thanks for the information my wife and I do a regular trip to Worcester each month all motorway and I don't think any services on our route cater for my coleac we haven't eaten out since I was diagnosed back in March but your national map has found some places not far from us we can try. Thanks alot, Tony

Tony Dean - 4th December 2019

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