Where to start if you have recently been diagnosed with Coeliac Disease

Gluten free bread and butter

I know right now you will be so daunted with your recent coeliac diagnosis – don’t you worry, it’s going to be OK. Don’t be hard on yourself and expect to know everything, it’s impossible. I’m still learning 17 years down the line. Taking ‘baby steps’ and being a bit of a ‘sponge’ in the beginning will allow you to slowly absorb great gluten free hints and tips and help you as a shiny new coeliac!

What I would love to do right now is transport every single bit of gluten free information in my head to you, as I would love for you to feel the same way about the diet as I do! However, I appreciate that’s just not possible. So, for now, I just will scratch the surface with a few things that I hope may help you as you start your gluten free journey!


Get together with your dietician

1st things first. Check that you have been referred to see a dietician – your gluten free diet is your treatment for your condition, and their support and expertise in the beginning is massive. It’s good to make a note of any questions you may have about coeliac disease and your diet, that you may like to ask your dietician. When I was first diagnosed, I remember the importance of sticking to a gluten free diet really hitting home for me, once I had been to see my dietician. If you can, get a family member or friend to go along with you to your 1st appointment – it’s really good for them to hear about the do’s and don’ts of your diet first hand – and you will be grateful for the extra pair of ears to pick up on things that you may have missed. I took my husband Neil along with me, and I’m really glad I did, as he was then aware of what he needed to do to help me maintain and manage my gluten free diet too.


Register with Coeliac UK

It’s good to register with Coeliac UK, they are the experts in the condition. They will send you an up to date food and drink directory to help introduce you to lots of safe gluten free products – don’t use an old copy – even the new copy has deletions and additions each month which you will need to check out (I suggest when you get the food and drink directory, sit down with a cuppa and have a little  flick through – be prepared to be ‘wowed’ with what you can still eat!!) There is also an app that you can get for your phone to check out suitability of products too. And then, once you get used to reading the ingredients on products there will be no looking back, and you will be tucking into all sorts! Registering will Coeliac UK allows you have full access to their extensive website, you will receive their quarterly crossed grain magazine and e-newsletter each month. They will also put you in touch with your local group – most areas have them. You can’t beat having a chat with someone who is going through the same thing as you, and people just love sharing all their gluten free tips!


Gluten free cupboard love

Everything feels right when home is sorted, so It’s really good to use your new gluten free diet as an excuse to organise your kitchen to make life easier to accommodate the change. Going through general products like stock cubes, herbs and spices, sauces, condiments, tinned products, etc and checking if they are gluten free will get you on track (not forgetting your fridge and freezer). If you are a large family and the products that contain gluten will get used by non-coeliacs, perfect. As it was just me and Neil, I decided to start from scratch for the basic cupboard essentials. I gave gluten containing products away and restocked the cupboards with products that were gluten free (make a little list of what you give away, reminding you what to buy again as a gluten free version) as this made cooking for us both much easier.  Lots of main stream brands like Knorr stock cubes (not the low salt variety they contain gluten) are naturally gluten free. And, if you pick up a suitable gluten free gravy mix or thicken casseroles etc with *cornflour it means that most of your main meals will be naturally gluten free and everyone can tuck in. Keeping a ‘safe shelf’ for all your cooking ingredients will simplify things when you are preparing meals, as you won’t have to think twice about grabbing an ingredient and sprinkling it in!


Try everything (gluten free of course)

My biggest tip to getting the most out of a gluten free diet, is be curious, be open to discovering new things and sample like crazy! Right now, you will miss things like your favourite bread – the good news is gluten free bread has come a long way over the years, and there are some great ones out there – it won’t take long before you establish the perfect one for you! I found it really good to make a list of all the products I liked, as I didn’t recognise brands in the beginning and I tended to forget what I had tried. Also, don’t be restricted to just the free from aisle as there is so much within the main supermarket that will be naturally gluten free. You may have already noticed, that more and more mainstream products within stores fall into this category, and some products in the standard aisles even helpfully display ‘gluten free’ on their packs too, like these nut bars. Gluten however is crafty, and will hide in places where you least expect it to be, so unfortunately you do have to get used to checking ingredients constantly, being mindful that manafacturers can also change their recipes. The good news is, this does get easier and will become second nature to you.

Just to mention, it’s important you also look out for ‘may contain’ or ‘not suitable’ advise on packs. This basically means, although there is no gluten within the ingredients, the product has been produced on the same line as gluten containing foods, and therefore may have been affected by cross contamination. Such warnings on packs are a voluntary statement from companies and generally only ever added if they feel there is a genuine risk of CC.  I never include products that have such warnings.


Gluten free foods on prescription

Gluten free products do cost more than gluten containing ones, and the support of basic gluten free products on prescription cannot be underestimated for many people trying to manage on a tight budget. Scotland, Wales, Northern Ireland and some CCGs within England allow a few basic gluten free products on prescription which is great! It’s really good to contact specialist gluten free companies such as Juvela and Glutafin who produce dedicated gluten free products for coeliacs – as if your GP prescribes, they are able to offer gluten free samples for you to try before deciding what you may wish to order on prescription.


Preventing Cross contamination

To ensure you diet is completely gluten free, you need to eliminate all sources of gluten. If you share your home with other people that are not coeliac you will just need to make a few tweaks to keep you on the right track:

  • Use a separate toaster or clean grill pan (I use fresh foil on the grill to toast my gf bread and scrap it when I toast gluten containing bread)
  • Use a dedicated gf chopping board (don’t forget a separate one for cutting up gluten free pizza too!) and rolling pin. Once used, wash these items separately by hand in hot soapy water, drying them off with a clean tea towel. If you don’t have a separate chopping board, you can simply prep something like a gluten free sandwich on a clean plate.
  • Use Separate pans and utensils (stainless steel is perfect as non-porous) for cooking and stirring gluten free foods and ensure washed thoroughly in-between.
  • Don’t fry gluten free foods in oil that has been used for frying gluten containing foods.
  • Use a fresh clean tea towel when drying utensils and kitchenware. Change your dish cloths frequently and ensure to rinse well in-between.
  • Clean work surfaces down thoroughly and wash hands in-between handling gluten containing products – I’m so sorry if I’m stating the obvious here!
  • Have a separate butter or margarine tub. Popping a sticker on will identify it’s for you.
  • Get into the habit of using a clean teaspoon (best to practice a ‘no double dipping’ rule from now on) for taking out marmalade, jam, spreads etc. If this isn’t going to be possible, do like the butter and have a separate one, with a sticker on.
  • Use the top shelf in the cupboard for storing things, like your gluten free bread, mix, cereals etc.
  • Bake uncovered gf food separately on the top shelf of the oven, on a baking tray or fresh foil. Don’t place food directly onto oven racks, as gluten containing foods may have previously been spilt on them.
  • Cover foods that you heat in a shared microwave, as gluten containing food splatters from the top may fall back into your food.
  • When barbecuing,  make sure to cook yours first on a clean rack – better still do the whole lot gluten free, makes life easier and so many meats will be naturally gluten free anyway. Just have to watch out for marinades etc.
  • keep your cutlery and crockery nice and clean and free of any food residue at all times.
  • Finally, I would suggest upon diagnosis of CD, you treat yourself to a new toothbrush or ideally if you use an electric toothbrush (I highly recommend you start using an electric toothbrush if you don’t already. Using one has made such a positive difference – to my not so great teeth) simply switch heads to a fresh one! Changing your toothbrush will mark the start of your new diet. And of course you then know its a sparkly clean one, with not even the tiniest amount of pesky gluten hidden within it’s bristles!


Gluten free Events

Have a bit of fun and take yourself, family and friends off for the day – head out to any gluten free fairs and events that may be accessible to you. At gluten free food fairs, as well as long established specialist gluten free brands, you will also find some fabulous independent stalls who offer amazing gluten free delights. There are normally great facilities to take a bit of time out too, giving you chance to enjoy a cuppa with a gluten free snack. The best gluten free fish and chips I have had so far, was at Gloucester gluten free food fair last year…. seriously I could eat them right now! Gluten free food fairs, events and social occasions are great – check out what’s happening near to you by taking a peep here and checking out other gluten free food websites such as Juvela, Glutafin and Genius.


Remember baby steps, and in no time at all you will be a source of knowledge and sharing your gluten free hints and tips with others!

Good luck – would love to hear what great tips you have learnt since being diagnosed?

Liz x

P.S. Don’t forget, if you have been diagnosed with coeliac disease your family will also need to get tested – before they reduce or remove gluten and even if not symptomatic – as the chances of them also having coeliac disease increases significantly due to it being a genetic condition. The recommendation for testing other family members would normally apply to grandparents, grandchildren, parents, siblings and children – but I have witnessed on many occasions’ aunties, uncles, niece, nephews and cousins also being affected. In addition, as coeliac disease can materialise at any time, should a test be negative, the test should be repeated periodically. 

*Check suitability for your gluten free diet.

6 thoughts on “Where to start if you have recently been diagnosed with Coeliac Disease

  1. John Hutchings says:

    Hi, Liz 😁

    At 54, I have today followimg an endoscopy, been told that I look like I have Coeliac. This quick and dirty look, with the positive blood test is 99% likely that the samples will come back positive.

    At 54. Other than low iron iron readings, I have always been fit and well, although I di get tired, but have put that down to lifestyle, (shiftworker).

    I have read your blog with great interest, but as a married father of 12 year old triplets, I do wonder hiw sustainable the whole separation lifestyle is going to be or indeed, is it really necessary?

    By definition I am clearly not chronically allergic like a nut allergy, so do I really need ti be thay particular abiut trace elements of gluten entering my system?

    I would value your informed and eloquent insight in to this.

    Interestingly, my sister, 47, has been a coeliac since birth!

    Kindest regards


    • Elizabeth Rimmer says:

      Hi John

      Many thanks for getting in touch. Whilst I know you are still waiting upon your endoscopy result; it looks like we may be welcoming you into the wonderful world of gluten free living very soon!

      I know It may seem a little over the top, but if you have coeliac disease, protecting your gluten free food from being contaminated with gluten is really important. So yes, it really does matter about the separation stuff I’m afraid. As even if you do not display any obvious symptoms your diet still needs to be 100% gluten free.

      Check out this extract from Coeliac Australia…..

      “Importantly, treatment with a strict gluten free diet leads to small bowel healing, resolution of symptoms and a reduction in the long-term risk of complications.
      Although symptoms can vary considerably in coeliac disease, everybody with the condition is at risk of complications if they do not adhere strictly to treatment with a gluten free diet. There is no correlation between symptoms and bowel damage so even if you are asymptomatic (you have no obvious symptoms), damage to the small bowel can still occur if gluten is ingested. This means everybody with coeliac disease, irrespective of the severity of their symptoms, needs to adhere strictly to a gluten free diet.”

      I appreciate it is easier for myself to manage the cross-contamination element at home as there is only myself and my husband Neil that use our kitchen. And for ease, most of the main meals I make by default are naturally gluten free. Recently I stopped baking with standard flour but instead use a gluten one to make cakes and pastries for us both as they turn out so well and also, I don’t have to fret if I’ve missed a bit of flour when wiping down the worktop! But I do still fetch gluten filled treats from the bakery for Neil to enjoy and he of course has standard bread too – he just keeps it well away from my food!

      Good luck with your new diet – whilst this shift in the way you currently live right now may seem a little impossible, with a few small adjustments and precautions you will get there. I’m sure your sister will also help you out with lots of great hints and tips! Don’t forget upon your diagnosis other family members will also need to be tested too.

      Feel free to get in touch at any point if you are unsure about anything regarding your gf diet…I will always do my best to help!

      Best wishes.

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