Help with Being Diagnosed With Coeliac Disease!

Everybody will remember when they were first diagnosed with coeliac disease. I was in my doctors office talking about my recent anxiety and panic attacks and he quickly slipped into conversation; “Oh and miss Aziz, your blood test results are back and I’m pretty certain you’ve got coeliac disease”.

“A coeliac what?” I managed to say. I didn’t know what it was, how to spell it nor how to pronounce it. Then came the never ending list of things that I could no longer eat anymore.  I had to say a heart rendering goodbye to my great loves; pizza,  pasta and the almighty student staple; pot noodles.

At the time, you do feel so lost and confused that you wish there was this huge helping hand with you to help you through the first steps. There’s no guidelines as such and everyone reacts differently to being diagnosed. Some are even happy to finally have an answer as to why they’re so ill! However, there are some that are sad to say goodbye to their old wheat loving lifestyle, especially when you feel that you didn’t really suffer when you ate normal bread etc.

Which is why I’ve created a few little guidelines [with the help of some cat pictures because, well – because cats are funny!] to help those who have  just been diagnosed and just let you gain some control in your new gluten free life. You don’t have to follow them numerically and remember – it does get easier in time and if you ever find yourself confused, upset, angry or just want to rant about Coeliac Disease [or anything else for that matter], feel free to email me and I’d be more than happy to help!

1. Sit Down and Have a Brew!


Although a brew [be it a cup of tea or a coffee] doesn’t necessarily sort out the problem but it does help you gain some perspective [plus it’s gluten free -yay!] Great things have been discussed over a brew and a brew shared amongst a friend or family member is a guarantee way of helping you get your head around the diagnosis and get things off your chest. It also helps you remain calm because realising how you’re going to have to change your lifestyle and eating habits can be a little overwhelming!

2. Register with Coeliac UK


Coeliac UK is the UK’s leading charity whose mission is to improve the lives of people with coeliac disease through support, campaigning and research.  They’re a fantastic charity and they have done so much for us coeliacs to make life that little bit easier. When you register with them, you are given 6 months free membership where you will receive a huge package of helpful guides and booklets [which I’ve blogged about here]. One of the things you receive is a Food and Drink directory which lists around 10,000 food and drink products from the UKs major supermarkets, which means when you’re out food shopping, you’re not sweating and fretting over endless amounts of food labels, all you do is check the food and drink directory and ‘et viola’ – it’ll tell you whether it’s safe and gluten free [you could say it’s a lifesaver!]. Not only that, but they also provide a Food and Drink helpline, 0845 305 2060

3. Put On Music, Dance & Clean Out The Cupboards



This can be the hardest part for any newly diagnosed coeliac. I remember emptying my food cupboard and getting rid of a dozen pot noodles, a huge bag of pasta, a fresh loaf of bread, crackers, biscuits [to name but a few!] and giving the whole lot to my housemate screaming “take it, JUST TAKE IT!!”. I did find playing some music while doing it [or in my case, blasting out some Madonna – don’t judge!] helped make it a little bearable. Try and have a friend or family member with you when you do it, to help read labels and look out for the horrible culprits that have been making you so poorly – wheat, barley, rye, oats, gluten [they’re often named on the product after ‘contains’ or ‘may contain’. Also, look out for ‘Made in a Factory that handles…’]

4. Buy Some Gluten Free Essentials




 This was the part I hated the most! I remember walking down the ‘Free From Aisle’ and thinking two things: “I’ve never heard of these companies”, and “My God! How expensive are those biscuits!”. I found it easier that I went with a little list of the ‘essentials’ I needed, such as gluten free bread, pasta and biscuits! Although I’ve found that gluten free pasta and gluten free biscuits [especially the one’s from TruFree -which you can find from most supermarkets as well as the Dietary Specials online shop] do taste just like the ‘real thing’, I did find that the gluten free bread does take some getting use to! I found most brands of gluten free bread taste better once ‘refreshed’ in the microwave or toasted but the Genius Bread [which you can buy from their online shop], the Warbutons gluten free bread and the Dietary Specials Ciabatta taste just like the real thing, so you can still enjoy your sandwiches! You also need to think about foods that you’ve shared with non-coeliacs, such as butter. As just one wheat laden crumb left in your butter, can still gluten you and make you poorly 🙁

I also found that once I’d got my essentials, I could sit down and make a meal plan for the week. I scoured the internet in search for simple gluten free recipes for my favourite dishes. I’ve made a little list of my favourite people at number 10, below.  Also, check out my recipe section and see if there is anything there you’d like to try!

5. Buy New Kitchen Stuff


Now I don’t expect you to throw out everything that’s touched wheat in the past [such as your knives, forks and spoons] but you may have to buy new cutlery, especially if you’re house sharing. One of the things you really need to consider [if you use it a lot like me] is a toaster. A toaster is a hot box of toasted bread crumbs, you only have to knock it ever so slightly to have a shower of crumbs all over your surface – so think how many nasty wheat crumbs are still in there! Having your own toaster will also help eliminate the possibility of cross contamination and I found myself a cheap one from Argos, for £5.29! Also think of your chopping boards, especially if you share a wooden chopping board. It’s best to have a cheap plastic chopping board, such as these two from Argos for £2.99!

6. Register with Glutafin


 Glutafin are an amazing prescription based gluten free company that offers newly diagnosed peeps the opportunity to sample their products! Once you register with their  Love Food group [which is free!] they send you this HUGE hamper full of full sized and some sample sized gluten free goodies! [I did a blog post about it here!]. My favourite thing from that box is their flour! I made my tastiest gluten free stuffed crust pizza using their flour! Plus, once you’re registered with in their Love Food group, you can see some of their highly rated recipes which uses their free from flour!

7.  Register With Juvela


Juvela are another great prescription company that offer newly diagnosed coeliacs a huge hamper of goodies once you register with them [and it’s free!]. Not only do they send you samples, and continue doing so, they also send you helpful guides, recipe ideas and information about Juvela!

8. Register with Dietary Specials



Dietary Specials are a great company [who are also from the same company as ‘Glutafin’]. They do a fantastic range of food such as their gluten free yorkshire puddings, their gluten free pizza [which tastes like the real thing!], short crust pastry and ciabatta rolls, to name but a few! Not only that, but if you register with them you can try some of their products for free! Plus, if you sign up to their e-newsletter, you can be updated of new products as well as their fun and amazing gluten free shows – which I had the pleasure of attending when they came to Manchester!

9. Register with Livwell


Livwell [who do amazing gluten free crumpets and bagels] also give out free samples to newly diagnosed people once you’ve registered with them for free!  They’re also available on prescription.

10. Join the Online Gluten Free Community




 One of the best things I did was join the online gluten free community. They are honestly the greatest bunch of people that are always there to cheer you up, stand by you and support you. I remember when my house mates were all ordering take out pizza and although I felt extremely left out and sorry for myself, the great peeps on twitter we’re there giving me support and just keeping my mind off it!

There are some fantastic blogs out there in the gluten free blogosphere! And although I’d be here forever mentioning all the amazing blogs, here’s a list of some of the blogs that I love! [Sorry if I happen to miss anybody out and if you know of any other amazing blogs, please leave a comment below and I shall get it added!]

FoodsYouCan–  is a fantastic blog that covers every allergy from dairy, egg and nut allergies to auto immune diseases like coeliac disease! It’s owned by such a fabulous lady called Bumni, who created it after a long stretch of inexplicable illness which started in 2004 [read her amazing story here.]

* GlutenFree[k] – is an amazing blog which is owned by the lovely Caleigh! Her blog has some of the prettiest pictures I’ve ever seen, check out these pretty gluten free lavender butterfly cookies! Not only does she cover gluten free recipes, but she also talks about her illness; Chron’s Disease.

* Girls Guide to Gluten Free Baking – is another amazing blog which is run by the lovely and witty Katie! Like Caleigh, she also suffers from Chron’s Disease and sadly she’s been quite poorly these past few months [which she has explained in her new blog post].  Get well soon Katie!

* Gluten Free Mrs D – If you’re worried about travelling since being diagnosed, the lovely Mrs D’s blog will help put your mind at ease! She has everything from restaurant reviews to product reviews!

* The Gluten Free Traveller – is another fantastic blog which is also aimed at the travelling bug coeliacs! Laura  [who hails from Scotland but is currently living in San Fran] helps coeliacs enjoy travelling the world without having to worry about gluten!

* Food Allergy & Intolerance Ink – is a site which is managed by our ‘honorary coeliac uncle’, Alex. His site is great for helping you understand the complicated world of Coeliac Disease, with help with understanding the new law changes to debates on why walkers crisps are no longer suitable for people with coeliac disease! He has also written an excellent book about understanding coeliac disease, which is an excellent read if you’re newly diagnosed!

* The Gluten Free Blogger – even though we share the same name [she’s called Sarah and although my name’s spelt differently, it’s still pronounced ‘Sarah’], she also runs an amazing blog that covers everything from easy and delicious gluten free recipes to gluten free product reviews!

* The Gluten Free Notebooks – is a great gluten free  blog by the lovely Claire. Her recipes are mainly inspired by British and Mediterranean dishes, she even made gluten free puff pastry!

* Wuthering Bites – another great blogger who shares the same first name as me! Sarah’s blog has everything from cute kitten pictures to gluten free recipes! Not only that, but she’s a Kate Bush fan like me!

11. Try Out a Simple Gluten Free Recipe


When I was first diagnosed with Coeliac Disease my cooking abilities stretched from making pot noodles to toasting some bread! Realising that I had to start cooking and baking from scratch in order to enjoy some of the things I’d miss, did put me in a panic as my confidence in cooking was a big fat zero. But what gave me a little confidence was forcing myself to make something as simple as cupcakes. Even though they came out misshapen and slightly burnt on top, they tasted fabulous and my confidence started to grow!

Which is why I suggest anyone who’s newly diagnosed to not jump in the deep end and just stick with basics! Why not try my basic gluten free cupcakes and basic chocolate cupcakes. Plus, they go great with a good brew!

If you are in the mood for baking, I definitely recommend Dove’s Self Raising Flour – which is available from most supermarkets in their free from aisle!




  1. May I advise your readers like me who are coeliacs, or who know someone who suffers from coeliac desease or dermatitis herpetiformis, that food products marked as gluten free or with the crossed-grain symbol are now not necessarily safe for all coeliacs to eat.
    Any food or drinks containing wheat, rye and barley are not gluten free but recently (early 2012 I think), the Coeliac Society has allowed oats to be deemed gluten free albeit they were previously considered unsafe for coelics. However, oats contain a protein called avenin and at least 5% of coeliacs cannot tolerate avenin and they should not eat oats.
    Sarah Sleet, CEO of the Coeliac Society, confirmed the 5% figure in a recent email to me and stated it was up to GP’s to advise patients of the risk of taking the crossed grain symbol and gluten free markings at face value. From what she says, it appears that the only way to find out if you are allergic to avenin is to risk making yourself ill eating oats. I did and was sick for days.
    Iain Maddox
    East Linton

    1. Thanks for the mention, Saara! Much appreciated and a great – and in parts amusing – post.

      Iain – I’m afraid you’re confused about some aspects of gluten free food and food labelling. There’s no shame in that – it’s a confusing subject – but it’s not true to suggest that ‘any food and drink containing wheat, rye and barley are not gluten free’ because quite a lot of gluten-free food is made using wheat starch, and wheat and barley based glucose syrup is also safe for coeliacs.

      Oats can be deemed glutenfree if they meet the <20ppm standard required of all gluten-free food – but yes, it seems some people still react to pure (uncontaminated) oats and the avenin protein.

      I can't speak for her, but I very much doubt Sarah Sleet meant to suggest that the GF symbol was somehow open to interpretation or that GPs should warn patients there was any 'risk' involved.

      Are you sure the oats you ate were guaranteed GF?

      Alex Gazzola

  2. I just wanted to say thank you so much for all the link love! It’s good to know that travelling and eating out carries on post-diagnosis, which has really cheered up this newly diagnosed avid traveller. Much appreciate the time you have taken in putting all this together.

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