Category: Diagnosis

  • How to be Coeliac – Getting started

    How to be Coeliac – Getting started

    I have recently been asked for recommendations for someone newly diagnosed with Coeliac Disease, so I’ve been putting a few thoughts together, which I’m going to cover in a short series of posts.

    Firstly, changing your diet is a massive shock and getting used to it can have ups and downs, and at times be really upsetting or stressful. In the beginning it’s just about coping. Here are a few things that have helped me adjust over time and see the positives:

    • Try to think about all the things you can eat. That’s all meat, fish, vegetables, fruit, rice, dairy, nuts, pulses, herbs and spices. In their natural state they are all gluten free and can be combined in unlimited wonderful ways.
    • I found it helped once I could accept that some of my favourite foods are in the past and focused on finding new favourites, whether that’s go-to meals or sweet treats. There’s plenty to discover.
    • If you enjoy cooking, you can make pretty much anything gluten free, including things you’re missing out on like Chinese takeaway food or Yorkshire puddings. Don’t throw all your recipe books out – other than baking, many recipes can be adapted easily.
    • Once I got my head round what I can and can’t have in the supermarket, I tend to do my food shopping online, as it avoids me walking past all the food I can’t have.
    • As a mum and (for a while) the only Coeliac in the house, I found it weirdly helpful that I couldn’t eat all the sweets and treats the kids wanted – it forced me to stop scoffing everything in sight!
    • My food shopping morals had to be compromised a bit. Too much restriction is depressing and the price of gluten free food can be high, so it’s good to shop around – different shops have a different selection of free from products.
    • You will have to talk about gluten a LOT and think about it a lot – every single mealtime with little let-up. This can be overwhelming to begin with, but you get used to it and you’ll build up a set of stock phrases you can just rattle out.
    • My perception is that Coeliac disease isn’t as bad as an allergy, because there’s no risk of immediate death if you (or someone else) get it wrong. That’s not to say there are no consequences, but mine, at least, are relatively short-lived, if somewhat unpleasant and inconvenient. (I know it’s different for everyone though.)
    • This must be one of very few diseases where the treatment is changing what you eat, rather than medicine, injections or surgery. I was amazed when all the symptoms I had put up with for years disappeared because I stopped eating gluten.
    • You will get glutened at some point – it’s a learning process and once you get the hang of it, occurrences become rare.

    Unless you have symptomless Coeliac Disease, you’re embarking on a food journey that will make you feel so much better and your body will begin healing itself. Good luck!

    I’d love to hear other points of view about coming to terms with this big lifestyle change in the comments.

    In the next few posts, I’m going to write about my experiences of food shopping and cooking at home, brands I’ve found I like, tips for eating out, eating with friends and family, and I’ll point to some of the really helpful resources out there on the internet. There is a brilliant online community of people on the same journey.

    In the immortal words of Guns N Roses, welcome to the jungle. 🙂

  • Hello!

    Hello!

    Hi I’m SteelyMcSteel. I’m eleven years old, I’m in year six and I’m Steeliac’s eldest child. It’s taken two or three years of tests and an on and off gluten-free diet to get diagnosed so I have a pretty good idea of what it’s like. First of all I have three main points to make.

    Firstly, the limitations of choice can be a good thing: it could help you to get healthier [say goodbye to lots of junk food] also, a gluten-free diet can help you become a more adventurous eater [gluten-free food can often be new or maybe something foreign].

    Secondly, a new diet does not have to be daunting: I was very sad when I first had to go on a gluten-free diet as I didn’t want to miss out on things like fish and chips or cookies. Thankfully Mum has proved me wrong as we can make or find most of the things we like.

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    Also, the best thing about getting diagnosed and stopping eating gluten is saying goodbye to the constant stomach aches and the epic toilet trips [you know what I mean!]

    I’m looking forward to writing more about my coeliac experiences and I hope you enjoyed what I had to say in my first post!

  • Challenging times

    First post in a while! It’s been a funny few weeks, adjusting to life in the lockdown. In general, things are ok chez Steeliac – we’re working from home and attempting to home-school our boys, as well as trying to keep things as normal as we can. I hope anybody reading this is coping ok and not impacted too much by the difficult side of the coronavirus crisis.

    We are lucky to have a garden and that we’ve been able to spend time in our local woods appreciating nature – this last week we’ve seen some spectacular bluebells and witnessed herons land on their treetop nests. These pleasures help to offset some of the trickier aspects of lockdown life, such as not being able to get hold of gluten free flour due to everyone’s new obsession with baking! And of course, we’ve never been so aware of the value of school…

    We have, however, had a bit of significant news recently, which is that my eldest has been officially diagnosed with Coeliac disease.

    It’s taken several years, a lot of persistence and a bit of stress to get this diagnosis. It was made particularly difficult because his blood tests came back negative. Although only one of three clinical tests for CD, the blood antibody tests are offered by GPs so are generally the first hurdle to securing a diagnosis. So with negative blood results and various attempts over several years, it took some persuasion to get the opportunity to try the other two tests.

    Thankfully, we eventually got ourselves in front of a brilliant consultant at the Sheffield Children’s Hospital, who, presented with the history and the symptoms, put us on the path to diagnosis. First a genetic test, and subsequently the dreaded gastroscopy, under a general anaesthetic. Due to the lockdown, we received the eventual diagnosis in a short phone consultation with my mobile on loudspeaker in my bedroom.

    We are, of course, left with very mixed feelings. I’m so thankful that we finally have the answer, and that we can make him better with food, but I’m devastated for my boy about the parts of this that will challenge, upset and test him in the years to come.

    But I’m also pleased I’ve had a head start on this and I know what to do! And I’m very hopeful that during our lifetimes, the research will provide us with other options than just the diet.

    On a positive note, I’m looking forward to reading and sharing his forthcoming blog posts and musings…