Living with a lifelong disease 

I’ve been diagnosed with coeliac disease for almost 7 years now. That’s over 20% of my life (to save the Maths, I’m 32 and was diagnosed when I was 25). Most days I don’t even think about it; it’s just part of who I am. I’m used to having to check everything I eat is gluten free and unlikely to have been contaminated. I’ve always been strict with my gluten free diet; I don’t want to knowingly do myself harm, and the fear of infertility (and various other conditions) is a huge risk I’m not willing to take. I appreciate for some coeliacs they don’t worry as much about the risks and don’t follow the diet as strictly. For me though, although I don’t like having coeliac disease most of the time it doesn’t have a huge impact on my life and as frustrating as it can sometimes be to have to talk about it when eating with someone new, it’s really not a huge hardship. Sure, I have moments where it gets me down (I’d love to try a Krispy Kreme doughnut!) and it can make occasions tricky (Christmas is a particularly challenging time of year), but it’s pretty much under control now. 

Or so I thought. 

You see the thing with a lifelong disease is that you have it for life (yes, I know that’s stating the obvious!). As with most other things in life though, it doesn’t necessarily stay the same. Just when you think you’ve got used to everything (the cool kids might say this is ‘the new normal’), things can suddenly shift. In my case this was caused by me going to donate blood a few weeks ago. I’ve been regularly donating for a few years now, though my iron levels are often borderline and once I wasn’t able to donate as they were slightly too low. This time round however they were shockingly low. To the extent that I’m not going to be able to donate blood for at least 12 months and when I went to the GP following the donor centre’s recommendation the doctor saw me immediately and I had additional tests in both the doctor’s surgery and at the local hospital that same day. It was all a bit of a blur, but the care I received was truly excellent – it really made me appreciate how amazing the NHS is and how we can sometimes take it for granted. 

So what’s going on? Well, I have low iron, and low vitamin D, but my B12 levels are in the normal range and my IgA test (for checking my coeliac disease is under control) came back normal. I’ve been put onto high dose Vitamin D tablets for 8 weeks, and I have an appointment with the doctor tomorrow to discuss if I need to do anything else. I’ve researched multivitamins and am taking some daily ones which are gluten free (I’d stopped taking my previous ones as I could t be sure they were gluten free). There are a few potential conditions which need to be ruled out, but it’s looking like perhaps it’s just a case of me not getting all the nutrients I need from my diet. Which sounds simple to change, though of course with the limitations of coeliac disease it has an additional level of complexity (I can’t have cereals for example which are a common source of iron and vitamins). The consultant at the hospital has passed on some information to my doctor I believe so I should hopefully know more after my appointment tomorrow.

I’m glad it’s been noticed, and is being taken seriously in case it’s something more major. However the reminder that I have a lifelong disease that could cause all sorts of future complications has really sucked. It makes me feel like damaged goods; someone who is weak and fragile and needs looking after (which as a fairly independent person has really not been a welcome thing to deal with!). I know I’ve been very lucky so far – my diagnosis was fairly straightforward and much quicker than many other coeliacs, and as of yet I don’t have any other autoimmune diseases. I’m fully aware I’m at an increased risk of many conditions though, even if I do everything I can to keep my coeliac disease under control.

If I learn anything new about my situation that may be helpful to others, I’ll write another blog post but for now I just wanted to share a bit of what I’ve been going through. Partly I’m writing this for therapeutic purposes to help me process things, but also in case anyone else with a lifelong disease is going through similar frustrations and can take solace from the fact they’re not alone. 

Daura Damm – Gluten free beer

As a coeliac, there are quite a few foods and drinks that you have to avoid. People often comment on how much you must miss bread, pizza, cake, biscuits etc. In actual fact it’s fairly easy now (in the UK at least) to get gluten free alternatives to most of these things. One thing that hasn’t been so easy to find until the last couple of years is gluten free beer. I remember going to a Coeliac UK local meeting when I was newly diagnosed and there was a gentleman there who loved beer and most of his social life revolved around beer festivals and CAMRA (Campaign for Real Ale) visits. This poor man had not just received a diagnosis of a lifelong autoimmune disease, he’d also had his social life completely changed. Of course he can still go along to these events, but he won’t be able to have any beer. Fortunately, things have changed in the last few years and I’ve seen more gluten free beer both in supermarkets and in pubs/bars.

I don’t tend to drink alcohol, and when I do I drink fruity ciders or spirits and mixers, but I have been intrigued about gluten free beer as its been years since I tried beer. A few months ago I was contacted by Daura Damm who kindly sent me some samples of their award winning beer to try.

I have to be honest, I discovered I still don’t like beer, but then I wasn’t a fan before so I’m not too surprised. I did find that this tasted much like I remember regular beer to taste like. I gave some samples to family members and friends who do drink beer, and the reviews were pretty good. Most said it tasted just like other regular bottled beers and that they wouldn’t have known it was gluten free if they hadn’t been told. One person absolutely loved it! One person wasn’t a huge fan but then they’re quite fussy about their beer and prefer real ale to bottled beers. Overall, people seemed to like them, and for those who have to follow a gluten free diet but enjoy the taste of beer they seem perfect.

Since trying these I’ve spotted Daura Damm in more and more places so it seems to be becoming much more widely available. As we’re coming into the Christmas season, these would be great to have if you have gluten free guests who like beer joining you. Although I personally don’t like beer, I know many people who do and it’s great that coeliacs and others following gluten free diet can now have an occasional beer if they wish to.

Daura Damm is available from many supermarkets – you’ll usually find it in the free from section rather than the beer section (though this isn’t always the case!).

Gluten Attack: book review and giveaway

I was recently sent a copy of a newly released book by Professor David Sanders called Gluten Attack: Is gluten waging war on our health? And if so what can we do about it?

I was very intrigued by this book and confess I was a little sceptical. As a diagnosed coeliac, I avoid gluten myself, but I know many others choose to avoid gluten and I’m not always sure if it’s necessary. Following a gluten free diet is difficult at times, so part of me thinks anyone who chooses to avoid it is a little bit crazy, but I also wondered if gluten was really as bad for non-coeliacs as it seems some think it is.

Professor David Sanders has been working in this area for many years, with both coeliacs and those who appear to have gluten sensitivity. The first chapter in the book discusses coeliac disease, but the book then goes on to explore gluten sensitivity (or coeliac ‘lite’) and non coeliac gluten sensitivity. I confess in the past I’ve been very sceptical about these areas, and do find it can muddy the waters a little in terms of what coeliac disease is and what it means to follow a gluten free diet (having reflected on this, I think my view was due to my frustration when I experience the issue in some eating establishments where they say ‘oh but it’s fine for other gluten free customers’). The book made me realise how lucky I am really – to have a confirmed diagnosis is a luxury many don’t have.

The book goes on to explore many related issues such as neurological effects, skin effects, irritable bowel syndrome, and infertility. Here’s an overview of the chapters:

The chapters vary in length; some areas do not yet have many medical studies. Some are areas I’m more interested in than others, but I’m sure other readers will have different interests, so I was pleased to see a broad variety. I found it very useful to have a summary of the medical studies presented, as well as David’s opinion on some of the things that need more investigation. One thing I did struggle a little with the OK was knowing who it is targeted at – some of the medical concepts were explained in great detail whilst others were glossed over. I also found it an unusual mix between formal reporting of medical studies, mixed with personal experiences and an informal conversational style of writing. By the end I decided I quite like this approach actually, but it was very unusual and not what I’m used to reading so I found it a little strange.

One thing I wasn’t keen on was the inclusion of recipes. I’m not sure why they were included as they seemed like a way to bulk out the book. There are many gluten free cookery books and recipes if you’re looking for that, and the recipes were not from the author, so to me they felt out of place. This is particularly the case considering one of the main messages from the book was to not exclude gluten from your diet until you’ve been to your doctor – to then provide gluten free recipes seemed a little odd to me. I guess they’re potentially useful to those of us who have been diagnosed with coeliac disease or have been advised to avoid gluten, but I don’t think anyone would buy this book looking for recipes.

Overall however, I really enjoyed reading the book and definitely learned more about what medical research has found so far, and what is still to be explored. I’d definitely recommend it for coeliacs interested in learning a bit more about the condition, though most of the book focuses on the tricky issue of non-coeliac sensitivity so I suspect it may be of interest in particular to those who are experiencing issues they suspect may be diet-related.

As I’ve finished reading my copy, I’d like to pass it on to someone else who would like to read it. If you’re interested in receiving my copy of the book, please enter the Rafflecopter draw which you can find on the Gluten Free Joeyanne Facebook page.

The draw will close on 31st October. Good luck!

Should coeliacs be entitled to gluten free food on prescription?

There have been an increasing number of news articles on the topic of gluten free food on prescription recently and (understandably) it’s one that coeliacs have a lot to say about. For those who aren’t aware, at present in most parts of the UK diagnosed coeliacs are entitled to get some basic gluten free food on prescription from the NHS. The only treatment for coeliac disease at the moment is to follow a strict gluten free diet so some coeliacs can get some staples such as flour and bread on prescription (despite what some articles say, this wouldn’t usually entitle people to biscuits, cakes or other luxury items). Unless you’re entitled to free prescriptions you have to pay for your prescriptions; most who choose to have gluten free food on prescription use the prepayment certificate option.

As budgets are tightened, local CCGs are having to make difficult decisions about how to save money, and one of the things some of them are looking at is reducing or stopping gluten free food on prescription for those with coeliac disease. My local areas is currently reviewing their policy on providing gluten free prescriptions. The briefing document on gluten free prescribing in Stoke on Trent and North Staffordshire outlines the costs and options available. The options are to continue as present; stop the prescriptions; or provide limited prescriptions.

I used to use the gluten free prescription service. When I was first diagnosed with coeliac disease I was introduced to some brands who are only available on prescription and my GP added a few of these items to a repeat prescription. I decided to get a prepayment certificate so I paid just over £10/month and for that I was entitled to a certain number of units of gluten free staples. I used to order through the electronic repeat prescription scheme so I would submit the repeat prescription online (via a mobile app) and once it had been approved by my doctor I would call the local pharmacy who would order items (and in my case deliver to my door when it was ready – though I don’t think this is common everywhere!). Many of the items on prescription you can only order in bulk and as we only had a small freezer compartment much of this space was dedicated to bread! I used to order probably on average about once every three months and would order bread (either sliced loaves or rolls), crackers, and multipurpose gluten free flour. Once I was more used to the gluten free diet and items became more readily available in supermarkets I decided to stop my prescription as I’m fortunate that my local stores have what I need and I can afford to buy them (gluten free alternatives are often a much higher price).

Although I don’t currently use the NHS gluten free prescription service, I would be very sad to see it stop. It was incredibly helpful for me when I was first diagnosed, and I know it would be beneficial if my circumstances were different (e.g. if I didn’t live near stores that had a good selection of good quality gluten free food, or if I couldn’t afford to buy gluten free versions).

If the prescriptions are stopped, some coeliacs may choose to continue to eat gluten (it can be difficult and expensive to follow a gluten free diet). If coeliacs continue to eat gluten, they are at much higher risk of many other medical conditions such as anaemia, osteoporosis, infertility, and cancers. I don’t have figures, but I believe the potential cost to the NHS if coeliacs don’t stick to a gluten free diet would be much higher than the costs involved in helping them follow a gluten free diet. There are other ways to support coeliacs (e.g. educating coeliacs to help them follow a gluten free diet and working with organisations such as Coeliac UK to improve the situation regarding labelling and availability of gluten free food), so this may be one way to reduce the future strain on NHS, though it is likely to involve a lot of work (and therefore cost).

I would welcome the CCGs considering other options such as voucher schemes which are being trialled in some areas where NHS provide vouchers which can be used in local stores to help towards the cost of gluten free food. This way the market is encouraged to provide gluten free food in stores, and those who *need* to follow a gluten free diet but may struggle financially are supported to enable them to follow the diet.

I attended a local coeliac meeting which was attended by representatives of the CCG as part of the consultation, and I also completed the online survey (both time I encouraged the CCG to look into alternative options). According to the CCG website they received over 300 responses to the survey (which I don’t think is that great to be honest!) and have developed a recommendation for consideration at the next public Governing Board meeting. Based on what has happened in other areas, I imagine the prescriptions will be stopped, though I hope this isn’t the case. I was pleased to have been able to be part of the consultation and look forward to hearing what the outcome will be.

Does your local area provide gluten free food on prescription? Do you use the service? Do you think NHS should provide gluten free prescriptions?

Busy Bee Cake House, Newcastle-under-Lyme

A local blogger let me know about this great new place which has recently opened in Newcastle-under-Lyme and has gluten free cakes!

Busy Bee Cake House sign

Busy Bee Cake House sign

Busy Bee Cake House is a cafe specialising in cakes (surprise surprise!). They also serve a variety of hot and cold drinks (at very reasonable prices!) and sandwiches. They have loads of delicious looking cakes, and even better they have cakes which are suitable for a variety of different dietary requirements, including gluten free, lactose free, dairy free, vegan, paleo, diabetic friendly, and protein cakes.

We visited one afternoon after lunch, and shared two of their gluten free cakes. It was so great to be able to have a choice. We actually arrived just as they had finished a new recipe so we were the first customers to try one of the cakes (currently unnamed!).

Busy Bee Cake House

Busy Bee Cake House – unnamed cake

Busy Bee Cake House

Busy Bee Cake House – unnamed cake and Chestnut Tower

Both cakes were lovely and light (always impressive for gluten free cakes which can often be dense and crumbly). The chestnut tower was really interesting; it tasted like it had liqueur in but we were assured that was the chestnut puree. It was really delicious – the different creams and the light sponge base worked together so well. The unnamed cake (I suggested just calling it a chocolate cream cake!) was made with rice flour but as anyone who has baked with rice flour knows, this doesn’t mean it tastes like rice. It had quite a subtle chocolate flavour and was again very light. There were other gluten free cakes available too; one I’m keen to try is the vegan cheesecake which I believe is free of all main allergens and diabetic friendly too.

It’s a lovely relaxed atmosphere in the cafe; whilst we were in there there were some people eating cake and others who just came in for tea/coffee. The owners are very friendly too – they talked to us about the gluten free items, and came to ask us for feedback on the new cake as well as name suggestions. It’s a lovely light airy space with minimalist decoration (mostly branded with the Busy Bee Cake House logo or featuring photos of their celebration cakes). They can make cakes for occasions and are happy to adapt to your needs – when we were in there someone was discussing plans with them for a couple of birthday cakes. They had a Despicable Me Minion cake and a 3 tier traditional wedding cake on display when we visited and they looked great.

Busy Bee Cake House in Newcastle-under-Lyme

Busy Bee Cake House in Newcastle-under-Lyme

Busy Bee Cake House is at 6 The Midway, Newcastle-under-Lyme and is open from 10am until 6pm every day. I’m sure we’ll visit again and it’s a great place for meeting friends. Highly recommended!

Gluten Free Favourites – August 2016

August has been a lovely month – my first month of self-employment! This has also coincided with some lovely weather every now and again so I’ve spent some time working (and relaxing!) in the garden, and we’ve had a couple of nice days out too. Food wise we’ve been having quite a lot of great Simply Cook meals, some Tyga curries, and I’ve been experimenting with some of the goodies I got from the Morrisons Free From event 🙂

August 2016 GF favourites.jpeg

Gluten free favourites – August 2016

Gosh! Chickpea, Courgette and Moroccan Spiced Bakes topped with Harissa Peppers – I hadn’t come across this brand until the free from event I went to as Morrisons HQ, and I’m so glad I have now. These are vegan and free of all 14 main allergens, and really tasty, especially the harissa spiced ones. You can get these from some Tesco stores and I believe they are coming to other stores soon (there’s a handy store locator on their website).

Tesco Free From Strawberry and Vanilla Cones – these are just fabulous. We’ve had them before and enjoyed them, but it wasn’t until we tried a competitor’s product that we appreciated just how good these are. The ice cream is lovely and creamy (despite being dairy free!) and the cone stays crisp. They get the thumbs up from everyone, well apart from fussy brothers who complain about the bottom having unexpected strawberry syrup as well as chocolate.

Twice as Nice Bakery Teff Cookies – these are sort of secret as they’re a new product, but they’re so fantastic that I just had to share in my monthly favourites. I’ll be honest, I had to ask Laura at Twice as Nice what teff was and why it’s so great, but once I’d tried the cookie I was sold. So much so I bought another to take home for my partner to try (I’m the greatest girlfriend ever). He agreed; they’re awesome. The flavour is great, but it’s more the texture that surprised me. They hold together really well, but still have that wondrous cookie-ness to them. They’re also vegan but you wouldn’t know it. Fabulous! I didn’t get a photo but Sarah Leanne at Growing Butterfly (who was the inspiration behind the cookies!) posted one on Instagram.

Barnacles Chip Shop – when you’ve had a lovely day in the sunshine and you’re by the seaside there’s nothing better than fish and chips on the seafront. Normally this would be a no no for coeliacs, but fortunately more and more chip shops are offering gluten free options. Barnacles in Llandudno has been offering it for a while and there is such a great selection. I’ll be writing a blog post soon but in the meantime I wanted to mention it in my favourites as the fish, chips and curry sauce I had were amazing.

Genius gluten free pancakes – these were given to me at the Morrisons free from event and to be honest I wasn’t that excited, but they’re brilliant. I simply toasted them for a few minutes and then spread Nutella on them. Such a nice weekend breakfast. It may have been the GBBO effect but they reminded me of jaffa cakes – just needed some marmalade and I would have been sorted!

Veggie enchiladas – I’ve been experimenting with some Newburn Bakehouse products I was sent to try and made some veggie enchiladas with the seeded wraps. I filled them with mixed pepper rice, refried beans, chilli powder and spring onions, and cooked them in salsa, yoghurt and cheese. Really easy to make but filling and delicious!

What have you been loving in August? Any recommendations? 

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Free From at Morrisons: a review of my visit to Morrisons HQ

I was recently invited to attend an event for free from bloggers at Morrisons HQ in Bradford. It’s the first event I’ve been able to attend and despite the nerves, I was really looking forward to it. I wasn’t sure what to expect (all I knew was that it was a free from event at Morrisons HQ!) but had been assured that we’d be given lunch and would be asked for some feedback on free from foods. I can’t describe how strange it is as a coeliac to be able to go out somewhere knowing that you’re going to be able to eat safely and don’t need to carry lots of snacks and have plans of various places you can grab food from in an emergency! After a slight issue with taxis, myself and some other bloggers made it to Hilmore House, the home of Morrisons HQ.

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We were welcomed by Stefanie Downey, the free from buyer for Morrisons. She explained her role and how important it is for her to get customer feedback on current and potential future free from products in Morrisons. We were introduced to some new products which will be launching in a few weeks I believe (more when they’re launched – I really hope they make it to my local store!), and shown how Morrisons decide which free from products to stock and how they should appear in store.

The Morrisons staff were all keen to hear from us so after some interesting discussion, we were taken to the development kitchen for Christmas dinner. Yes, Christmas dinner. In August. The head chef pointed out that by this time of year he’s actually pretty much finished Christmas as all the products have been developed, tested, refined, and are now ready to be produced and packaged and put in stores. For our Christmas dinner we had prawn cocktail (with the sauce being made using free from tomato sauce and free from mayo), traditional roast dinner with turkey and lamb with a peppercorn crust (with gluten free stuffing and Yorkshire puddings), and Christmas pudding with soya cream. We were also given a sample menu which had other options including salted caramel profiteroles (much more to my taste than Christmas pudding so will definitely be looking out for these!). Morrisons have other free from Christmas products planned too, including Christmas spiced cookies which were delicious.

After lunch we had some samples of other foods, including those from free from suppliers such as Genius, Schär, Heck, Gosh, Perk!er, and Alpro (more to come on some of these brands!). I also got to do a 90 second plank to enter a competition! Genius shared some of the difficulties they experience baking gluten free, and had some of the flours and thickeners they use and got us to try them out to see how they respond to being mixed with water. They showed us some really interesting photos of what happens if you use just one of the gluten free flours in place of regular flour, which was fascinating to see! It certainly explains why sometimes you get very dense gluten free bread and sometimes you get one with massive holes in! Genius use a mix of flours to try to make the most of each of the properties, but also explained that this does mean the mixes can sometimes be inconsistent depending on the time of year and the crop. It certainly opened my eyes to another reason why gluten free food can be so much more expensive – not only are the ingredients more expensive and potentially more difficult to source, but there is also more wastage due to inconsistencies. I always really enjoy chatting to free from suppliers about their products, and the people behind the brand.

Genius gluten free bread workshop

Genius gluten free bread workshop

All in all it was a really excellent day. I enjoyed meeting other coeliacs and free from bloggers, learned a lot about how free from products make it to supermarket shelves, ate some yummy food, and was even given some samples to take home. Huge thanks to Morrisons and the other suppliers for being part of a really enjoyable day 🙂

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