Tony’s coeliac story

After testing negative for the Coeliac blood test (apparently 5% of Coeliacs do!) I underwent various investigations including barium meal test, colonoscopy, bone density scan and finally endoscopy & biopsy. These were over a period of about 6 months and the results of the biopsy in October 2006 confirmed the diagnosis. I was 63 years of age.
I suppose my symptoms began to be apparent in my early thirties when at times I suffered with painful bloating and wind. I couldn’t identify a particular cause & usually thought it was from eating over-rich food, or fatty food like pasties & pies. However, I did identify that eating only a few biscuits brought on painful bloating. Over time my worst symptom, diarrhoea, became more & more problematic to the point I was reluctant to go on business trips or visit anywhere unfamiliar. It was this that finally forced me to  see my GP & started the testing.
Living with Coeliac disease has been an eye opener and very frustrating but also, strangely, a new adventure!
A new adventure in that I have found good gluten free food often tastes better, (for instance yours & other gluten free sausages, & gluten free fish & chips.)  I have learned new skills, such as making my own bread & pizzas etc.
It has been an eye opener in that I did not realise, until diagnosed, how much wheat and wheat products are used to ‘bulk out’ foods to ‘con’ the British public into thinking they are buying quality when they are really buying rubbish. For instance I have found that a lot of sausages contain less than 70% meat & the rest is rusks etc. No wonder the Europeans are contemptuous of our meat products when theirs often start with over 100% meat!
Why do gravy mixes & sauces have to contain  wheat?
Apart from the problems for Coeliacs I think there needs to be a campaign to educate the public in what goes into their food; not just the artificial additives but cheap cereal additives that aren’t necessary & don’t improve the quality.
Frustration comes from producers and caterers not clearly identifying whether or not their products contain gluten (or other allergens). Don’t producers realise that sufferers get tired of reading every single ingredient on a label & simply go for those that do clearly mark products? (like yours). Similarly Coeliacs find that staff in take away food outlets, restaurants & pubs generally know little if anything about Coeliac disease (or other food intolerances). Holding up a busy queue in a take away whilst staff try to find out what is or isn’t gluten free is embarrassing. Having a waiter/waitress in a restaurant or pub going backwards & forwards to the kitchen to check ingredients is frustrating. The result is we don’t eat out as often, or stick to places we know & who know I’m gluten free. Caterers who don’t identify which of their items contain gluten lose the custom of Coeliacs. They may think that is only 1% of potential customers but if (as in my case) we go out as a family it’s not one but five customers they lose!
A restaurant I visited in Dublin identified on its menu (with a simple code) which items were gluten free, nut free, vegetarian etc. As this was posted outside the building I was able to enter, confident that I could make a gluten free choice without embarrassment or frustration. If they can do it why can’t all?
Whilst I can get good gluten free alternatives for most foods & have a good choice of products from supermarkets like Sainsbury’s’ & Morrison’s the thing I miss most is not being able to go into a pub and enjoy a pint of real ale! The problem is there is no reliable test for gluten in beer so the Coeliac society & specialists play safe & say beer is out. Whilst there are gluten free beers (& a couple aren’t bad) in supermarkets the number of pubs that sell them are few & far between. Certainly none in my area.  I wish more of the small independent breweries would have a go at producing gluten free beers & get them into pubs.


~ by theblackfarmer on May 11, 2009.

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