Blog move

I’ve recently moved all my content over to my new website and new blog posts for the last few weeks have been published on there.

I’ll be writing posts on a variety of different topics including personal development, product reviews and recommendations and things I’ve learnt and would like to share. Content will reflect my current interests and activities (at the moment I’m doing daily posts from my beauty advent calendar). If you’d like to keep up-to-date please visit my new blog at and if you wish to subscribe there are details at the bottom of the page or you can subscribe via Bloglovin.


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?

My journey to a gluten free life

I, along with many other gluten free bloggers, are gluten free because we have coeliac disease. This week (13-19 May) is Coeliac UK’s Awareness Week which this year is focused on ‘gut feeling’ and helping people get diagnosed. It’s estimated that around 500,000 people in the UK have coeliac disease but are currently undiagnosed.

What is coeliac disease?

For those who don’t know, here’s some basic information about coeliac disease, taken from the Coeliac UK website:

Coeliac disease (pronounced see-liac, spelt celiac disease in other countries) is an autoimmune disease. Gluten, which is found in wheat, barley and rye triggers an immune reaction in people with coeliac disease. This means that eating gluten damages the lining of the small intestine. Other parts of the body may be affected.

What are the symptoms of coeliac disease?

Coeliac disease is an unusual disease in that the symptoms are different in different people, which makes it very tricky to diagnose. Some don’t experience any noticeable symptoms at all, only showing internal damage. Many coeliacs are diagnosed with IBS initially, which seems to be a catch all for most digestive problems which appear to have no other cause. Some of the typical symptoms can include:

  • diarrhoea, excessive wind, and/or constipation
  • persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
  • recurrent stomach pain, cramping or bloating
  • any combination of iron, vitamin B12 or folic acid deficiency
  • tiredness and/or headaches
  • weight loss (but not in all cases)
  • mouth ulcers
  • hair loss (alopecia)
  • skin rash (dermatitis herpetiformis (DH))
  • tooth enamel problems
  • osteoporosis
  • depression
  • infertility
  • repeated miscarriages
  • joint and/or bone pain
  • neurological (nerve) problems such as ataxia (poor muscle co-ordination) and neuropathy (numbness and tingling in the hands and feet).

(List from Coeliac UK website)

Treatment for coeliac disease

The only treatment for coeliac disease is to follow a gluten free diet. In the UK, those with coeliac disease can get some gluten free essentials on prescription – I pay by direct debit and get bread, flour, crackers and pasta. As you’re probably aware, many supermarkets have a free from range now, though quality varies. I’ve found most of the bread to be very disappointing compared to that I get on prescription, but the biscuits and crackers are usually nice. Eating out can be tricky but it’s getting much easier, with many brands and independents catering for a gluten free diet. The big problem is cross contamination – the food itself may not contain gluten, but if it’s cooked with things that do then it could have traces of gluten.

Over the awareness week, a number of gluten free bloggers are sharing their story so I thought I’d share mine…

My story

I can’t really put my finger on when I knew something was wrong but I think it was during my late teens. As a child, I ate ‘normally’ – well, I was very fussy as a young child and lived on crackers, cheese and crisps! I don’t remember having many problems when eating gluten back then, though I was a gymnast and did suffer bloating and stomach ache at times but usually put that down to not eating enough (training 4 times a week straight after school made it difficult to get enough energy to exercise, and I often had a small lunch), or down to nerves (I used to always feel ill around competition time).

At University, I continued with my gymnastics though less intensively and only twice a week, and ate a lot of rice and pasta meals. Oh, and lemon meringue pie. But I was out one evening and passed out. I remember being really annoyed as when I came to in the medical room of the bar everyone presumed I had drunk too much, but I’d not been drinking that night. From then on, I tried to ensure I ate enough (I have a terrible habit for forgetting to eat), but suspected I was perhaps anaemic. My weight stayed pretty stable so I wasn’t too concerned and fortunately only fainted a few times before I seemed OK again.

Gymnastics team at Bangor University (I'm the one holding the trophy)

Gymnastics team at Bangor University (I’m the one holding the trophy)

Fast forward a few years and I was working as a subject librarian in a university. I began to get cramps on a fairly regular basis but assumed it was hormonal. I had been taking the contraceptive pill, so stopped taking that to see if it made a difference. It didn’t. I was frequently constipated, so much that it became a bit of a joke between my partner and I, and the cramps became worse. I loved the teaching element of my job, but there were some days when I just wanted to curl up in a ball and standing was really difficult. Fortunately, it never got to the stage where I had to take time off work (I’ve never had a day off work in almost 8 years of work, touch wood that remains). Some days though, it was so painful that I’d just get home and cry and go to bed. Nothing seemed to help – I tried sitting, standing, curling in a ball, various different tablets, period pain patches, hot water bottles. You name it, I tried it.

Around this time, we went on holiday to Orlando. We visited the Disney and Universal parks and I stuffed myself with typical American food; pizza, cheeseburgers, hot dogs, fried food, pancakes, waffles etc. I felt ill for a lot of the holiday (unsurprising given what I know now!) but thought it must be the rides making me feel sick.

I doubt this pizza did me any good!

I doubt this pizza did me any good!

Eventually, my partner encouraged me to go to the doctor when it clearly wasn’t getting any better. I was very fortunate that the doctor organised blood tests to test for everything. I had 7 different blood tests, 6 of which came back negative. There was one outstanding one, the test for coeliac disease, but the doctor felt sure it wasn’t that so I was diagnosed with IBS and given tablets to help. The tablets did seem to help, but a couple of weeks later the other blood test came back positive. I went back to see the doctor and was referred to the hospital for an endoscopy. At this point, I researched coeliac disease and was totally overwhelmed by how difficult a gluten free diet seemed. I was told to continue eating as normal until after the test to prevent a false negative.

I’m not going to sugar coat it – the endoscopy was not nice. I was asked if I wanted an anesthetic throat spray and sedative to help, which I said I did want. If you’re going to shove a tube down my throat I want everything I can get to help it seem less painful! I was told I’d be very woozy afterwards and may feel a bit like I was drunk. I didn’t. I don’t know why but I guess we’re all different and it just didn’t seem to have any effect on me. I was totally alert throughout the procedure, which felt really uncomfortable. It didn’t hurt so much, just felt very strange. I was moved to recovery and told to stay lying down for an hour, but I felt absolutely fine. My partner came to collect me and was expecting me to be acting strange but I was my normal self (he was disappointed as he was trying to play tricks on me!).

After the endoscopy I was told I could move to a gluten free diet, which I did. I found it hard at first, mainly due to unclear labelling and just not knowing where gluten might be hiding (answer: anywhere, check everything!). My family and friends found it hard too, and Christmas that year was hard because most of the food we normally had wasn’t gluten free. They were very good though and tried to adapt things.

On December 31st 2009, I received confirmation that I had coeliac disease. I had such mixed feelings about it. Part of me felt so relieved that I know knew what was wrong and could take steps to get better, but part of me felt really down about the fact that I had a lifelong disease that meant eating would never be simple again. Oh, and the nerdy numbers part of me loved the fact that I’d been diagnosed on the last day of the decade so I could start the new decade in the knowledge that following a gluten free diet should mean I can stay well.

Contrary to what some people believe, to prevent the effects of coeliac disease you do have to cut out all gluten from your diet (yes, even that little bit that might be on the gluten free cake if it’s next to a cake with gluten in). You also have to do it for the rest of your life (unless a cure is developed in the future). It’s not possible to slowly introduce gluten back into your diet without feeling the ill effects. For me, if I accidentally eat gluten I’ll feel the effects in a few hours and will be ill (cramps, bloating, constipation, diarrhoea) for usually around 3-4 days. What concerns me more however is the internal damage. If a coeliac eats gluten, the body continues to attack it and the villi in the intestine will flatten. This means you’re not going to be taking in nutrients and can therefore lead to all sorts of other issues. There’s also links to some cancers, and infertility (this one terrifies me!). But it’s not all bad, you can still have some yummy food!

Examples of gluten free food

Examples of gluten free food

Things can only get better

Since my diagnosis, things have already improved so much. Labelling is getting clearer (there are a number of laws around labelling of gluten free food), knowledge is improving, and I’ve been so impressed with the eating out options now available (and more are coming on board all the time!). Coeliac UK continue to drive forward new developments too – they are soon launching a mobile app to enable access to the food and drink directory which lets you know if something is gluten free. You’ll be able to scan the barcode of the product whilst in the supermarket, and find out if it is suitable (if it’s in the directory). I can’t wait until this is available as its something I’ve been requesting for a long time.

I think I may have coeliac disease…

If you think you may have coeliac disease, please see your doctor and mention your concerns. Knowledge within the medical profession seems to vary (I was lucky that I was tested for coeliac even though my doctor didn’t think it would come back positive), but you can specifically ask for a blood test for coeliac disease. There’s loads of useful information on the Coeliac UK website, but please don’t feel like you have to go through this on your own. I’ve been there, and I know it’s not always easy, so please feel free to contact me if you want to talk about it. I admit there are days when I just want to be able to eat like a ‘normal’ person, but coeliac disease is part of who I am so it’s something I’m happy to talk about and help others with. Please feel free to leave a comment on this post, email me, or send me a tweet (I’m @joeyanne) if you want to talk about it.

Please help spread the word about coeliac disease by sharing a link to this blog post, or to the information available on the Coeliac UK website.

Mention in Coeliac UK’s Crossed Grain magazine

Thanks so much to Coeliac UK who recently featured my Posterous blog in their Crossed Grain magazine. Look, it’s my Joeyanne Posterous blog!

Feature in Crossed Grain magazine

Feature in Crossed Grain magazine

Sadly, Posterous will be closing at the end of April so I’ve moved all my content from Posterous over to the new home at WordPress (right here!).

I’ll be continuing to post gluten free food reviews, recommendations of places to eat (or not!), and sharing recipes/photos of my own gluten free baking/cooking. For more information check my about page.

Please subscribe by email or RSS (links for both options in the right hand sidebar) if you’re interested in following the trials and tribulations of my journey as a coeliac in the UK. Feel free to comment on any of my posts, or you can contact me. Thank you! 🙂