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IMG_0375I have now been diagnosed as a Coeliac for 10 years so I thought is would be interesting to muse a little about what the experience has been like for me over this period.

I now wish I had been writing this blog when I was first diagnosed and could go back to read how it felt at the time. My memories of it was that it was a shock to be diagnosed and I wasn’t at all sure how I could manage with such a restricted diet. I did not have any family or friends who had the condition and I was a single, working mum with 2 teenage children so it was all a bit disorientating to start with.

I vividly remember the first time I went shopping – it took me about an hour and a half to do my normal shop as I was having to read the ingredients list on everything that I normally bought. It wasn’t helped by my struggling to read the ridiculously small print that the information was printed in. (This led to my having my eyes tested and to going straight into varifocal glasses from having perfect vision – but that is another story). I remember being very depressed and upset and getting really frustrated.

I was advised to join Coeliac Uk which I did. I found their web site extremely helpful, and their book of gluten free products a god send. I used it all of the time when I first got it, although I found I settled into a range of products that I knew were safe quite quickly. I religiously updated the book every month with the information they sent to me. After about 5 years I stopped doing this as I was more confident about what I was buying – and the marking of allergens on products had started to improve by then.  I still use the book, but very rarely. I am really pleased that they have now released an app that I can use on my I-phone which means I am using it more often again now. I also like to use their list of venues that cater for Coeliacs – and have sent in recommendations for places I have found too.

I found my visit to the dietician frustrating. As a librarian I had done a lot of research into the condition and I had already found out about virtually everything they told me. The questions I did had have they couldn’t answer. They sent me a letter afterwards saying I had agreed to be signed off from them – not what I remembered about the appointment, but it suited me as it hadn’t really helped.

The added complication of my condition was that I was found to have osteopaenia. This is the stage before  osteoporosis – the thinning of the bones due to a lack of calcium in the diet caused by my body not absorbing all of the nutrition I was eating due to the villi in my stomach being stunted. I was also chronically anaemic. The latter was sorted out through eating a gluten free diet  and so absorbing enough iron – along with me putting on 2 stone without increasing the volume of what I was eating. I have been on calcium tablets for the last 10 years for the osteopaenia – prescribed for 8 years and then Forever Calcium for the last 2 as my 2nd Dexa scan (bone density scan) showed no improvement after 8 years. I have written more about this in a separate post.

I did go along  to a local Coeliac UK meeting for the recently diagnosed, however I found it a very depressing experience as most of the other people were focussing on all of the things they could no longer have. I found it a little like how I think an Alcoholics Anonymous meeting would be as everyone was identifying themselves by the date they were diagnosed. I had passed the grief  stage by this time, and was in some ways grateful that if I had a condition it was one that could be managed with diet, rather than something like Crohn’s which my brother has had since he was 16. I have since developed Microscopic Colitis due to a very stressful job and dislike having to take steroids which is the only way to clear it up. It took me 10 years to attend another meeting – and this one was very different. We had an excellent talk about providing support for teenagers who were diagnosed, and some excellent cakes from the Slice of Heaven bakery which were delicious.

I am now reasonably settled into my life as a Coeliac. I still find it frustrating when I am having trouble finding something to eat when I am out, but I am rubbish at planning ahead so some of it is my own fault. I find the reaction that I have to eating gluten difficult – sickness, diarrhoea, light headedness, bloating, gasiness and fatigue. I didn’t have a noticeable reaction after eating gluten before I was diagnosed – but my body really doesn’t like gluten now. I am lucky in that it only takes me a few days to a week to get over a glutening episode physically when I know some people who take a lot longer. Mentally, however, it can take me a number of weeks to be confident about eating out or having something made by someone I don’t really know.

I must say that the range of foods available to me are now greatly increased from what was available in 2004. The knowledge of catering establishments is improving, with a lot more of them providing gluten free menu’s, marking their menu’s or having diet sheets (although the print on them can be difficult to read and some restaurants don’t keep their folders up to date).

I am happy to talk to anyone who is recently diagnosed, or who has family or friend who have been told they have the condition. Get in touch, or comment on this post about your experiences if you feel it would help others, or you just want to let it all out.

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