Being a Coeliac – certainly Life Changing – but NOT the end of the world!

As occasional readers will know, I was diagnosed with Coeliacs disease after a year of ill-health almost 2 years ago now. The diagnosis was, as the consultant told me at the time, ‘Life Changing’. I wont bore you with a definition of Coeliacs disease, just use your favourite search engine and look for Coeliacs (UK spelling) or Celiacs (US). Suffice to say the body reacts adversely in various ways to Gluten, none of it good. Being genetic, its a bit of a mystery why it only became more aggressive in later life for me(57). I suspect a virus I caught triggered the increase.

Once diagnosed, my consultant sorted out a session with a dietcian and pointed me at Coeliacs UK (The UK Charity), which is a great source of information and support to newly-diagnosed Coeliacs. I (and my wife) had a very steep learning curve. Gluten seems to be in just about everything (including some medicines – beware!). The first shopping trip after diagnosis took ages (every label had to be checked). I also discovered that as a diagnosed Coeliac in the UK I was (and am) entitled to get an amount of Gluten Free staples on prescription – hint for the UK – consider getting a pre-paid NHS prescription card – can save you a fortune. Unfortunately the NHS are cutting back on this. But on the bright side their is increasing availability in the high street to offset this (and while more expensive than Gluten-laden options, still cheaper than a prescription item).

We also discovered the need for separate toasters, butter/margerine/chopping boards etc to avoid cross-contamination. In that first year, we attended the AGM of Coeliacs UK – extremely useful to be able to gain insight from fellow sufferers and also knowledgable experts and also the Allergy and FreeFrom show, which again was very useful – in the first year.

To be honest, aside from the weekly shop hassle, once we had the kitchen sorted, the biggest challenge was eating out. Shopping has been made much easier this year by the regulations introduced by the UK Government that all foods have to have allergy information on the packaging and in terms of eating out, restaurants are now much more aware, with many chains having Gluten  Free specific menus.

I had my first overseas Gluten Free holiday last year (2014) and viewed it with some trepidation. We went to a Greek Island, Cephalonia. Before we went I looked on the web for any information related to a Greek Coeliac organisation. Luckily there was one and they had created a document, containing the requirements of a coeliac in Greek, which was invaluable when eating out. In truth, it wasnt anywhere near as fraught as I thought it would be and we even discovered a bakery that baked gluten free bread and rolls. I must confess that I did take some Bread, Pizza Bases and Pasta with me on holiday, just in case. But we found that even the smallest supermarket had come Gluten Free products available and clearly marked (just as well as my ability to read Greek is non-existent).

I DID have a completely unexpected side-effect of becoming Gluten Free. I had suffered with Asthma since my teens. I am very pleased to say that it has disappeared. My overall general level of health is greatly improved.

My daughter has had a variety of issues with her stomach since she was about 7 or 8 (she is now 19). When I was diagnosed, we had her checked and it turns out she has it too! If there is one member of the family with it there could be others.. worth checking.

We are pretty much a Gluten Free household now (although I haven’t been able to persuade my wife to eat Gluten Free Bread!), which makes things much easier. I do still get caught out occasionally – hint check the ingredients even on products that you know are Gluten Free – they can (and DO) change the recipes.

I’m finding being a member of Coeliac UK less useful now as I gain knowledge. Likewise for public exhibitions like the Allergy and FreeFrom show. The general level of awareness has improved massively in the last couple of years. Its becoming easier to be a Coeliac every day.

At the end of the day, being a Coeliac has its challenges, but all very controllable. Its just an issue with FOOD – it could be much worse.

Thanks for reading.

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So… a long overdue update – Just WHERE am I on my Gluten Free Journey?

I hadn’t realised how long its been since I last wrote an update. Too long. So.. quick summary for those who didn’t catch the earlier posts…

I was diagnosed with Coeliacs disease in December last year after a long and at one point life-threatening spell which lasted the best part of a year. That’s history(a lot more to it than that but hey, I’m not here to bore you -intentionally anyway)!

Where am I at? I joined the UK Charity for Coeliacs (Coeliacs UK) who are very organised and have just launched a phone app which is invaluable. If you are a coeliac and in the UK I would thoroughly recommend joining. I discovered its a lot more common that I thought(evidence two events I attended recently, one specifically for Coeliacs and the other a general AllergyShow at Olympia in London – both were packed out(although to be honest I’m still not sure where having a vibrating bed or doing Yoga helps allergies but I will be pleased to be corrected). 

Both shows have shown me just how good things are (in the UK anyway – would love to hear from any coeliac sufferers overseas). The need for Gluten Free groceries is very much mainstream – with an ever growing list of options for food (and drink). Restaurants are becoming more aware – even hotels – evidence my recent trip to Dublin!. As I am a diagnosed Coeliac (sounds awful doesn’t it?) I can get some help via the UK National Health Service which is great. I guess my one ‘whinge’ (well it is monday after all) is that for the moment, Gluten free variants of food and drink are more expensive than the non-Gluten free versions(I was going to say normal, but normal is a state of mind lol). I AM enjoying researching the various Gluten Free beers and Lagers (expensive and small bottles – in the main) as I used to really enjoy ‘REAL ALE’.

So, personally, from a situation where at my lowest I had lost a total of 42 pounds in weight(3 stones to those that know the imperial weights and measures, or 19 Kilos) I am now in the pleasant situation of being told I need to lose a few pounds, Result!

Coeliacs is Genetic. If you have it, you have it and it wont get better. This brings me to the most recent news. My daughter is now being tested as she is exhibiting classic signs of Coeliacs, She is 18. On the positive side, even if she does have it (and it looks like she might) – its only a change of diet and the benefits of going Gluten Free in that situation are SO life-changing.

I’ll keep you posted. Thanks for reading.