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Diagnosis changed Phil's life forever
Up to one in 100 people in the UK has coeliac disease, a food intolerance which means sufferers must avoid products containing gluten or face a range of serious health problems.
Up to one in 100 people in the UK has coeliac disease, a food intolerance which means sufferers must avoid products containing gluten or face a range of serious health problems.To mark Coeliac Awareness Week, which runs until Sunday, May 18, Hannah Gray Chats to local sufferers about the impact it has had on their lives.
THE mark of a good holiday for many of us might be getting lucky with the weather, or managing to see all the sights.
But when you have a serious food intolerance, your priorities change.
For Phil Kendall, a retired civil servant and a sufferer of coeliac disease, finding a supermarket which stocked gluten-free food, just down the road from where he was staying in Skiathos, Greece, was the stuff of lasting memories in 2007.
Related: Nicole Pritchard, was a healthy young girl until four years ago, when the diagnosis of coeliac disease and an underactive thyroid changed her life forever.
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"It was literally the best holiday I've had since becoming a coeliac," he said.
Just a tiny amount of gluten – a protein found in wheat, rye and barley – can cause him a serious stomach upset, so his life is one of constant vigilance to make sure he eats the right foods.
Before his diagnosis, in 2003, he was suffering a range of symptoms, including severe diarrhoea, pain in every bone and every joint in his body, anaemia and osteoporosis.
He suffered from mouth ulcers, and problems with his co-ordination, had skin rashes and was lethargic.
"At work, getting up three flights in the lift was a major achievement. When I first started, there I could go up three flights of stairs, two steps at a time," he said.
Phil's eventual diagnosis came after a severe bout of food poisoning.
Before his career in the civil service, Phil (62), from Parnwell, Peterborough, was a lecturer in biological sciences for 20 years. His knowledge meant he was aware what coeliac disease was, and he quickly realised that he needed to radically alter his diet.
"It was a question of coming home and going through the kitchen and taking out all those things which were based on gluten or contained gluten.
"It also meant throwing out some kitchen equipment, because you can't guarantee it's gluten-free. We can't ever use the pasta maker again and we had to buy a bread maker," he said.Phil has what is known as a high threshold for tolerating gluten in his diet, but this doesn't necessarily mean he can help himself to a huge plate of regular pasta – he can still only tolerate 200 parts per million of gluten without becoming ill.
His kitchen is now well-stocked with carefully-sourced products such as corn meal and tapioca flour, which allow him to cook the food he likes without the gluten.
Special dietary requirements are becoming increasingly better catered for in our supermarkets, and Phil said that Sainsbury's and Tesco both have very good ranges of gluten-free food.
Paul has had to learn to watch for gluten in everything he buys, even in the most unlikely of sources.
Mixed spice can sometimes be bulked up with flour, and commercial chips, for example frozen ones or those used in the catering trade, are sometimes dipped in flour to help them turn brown.
Having to alter your diet so radically could, for some people, be a very depressing thought, as you wave goodbye to your traditional meals, snacks and treats.
But Phil decided to view this diet change in a different way.
"I knew it was going to have to change totally and for ever, but being quite an experimental cook, it became a challenge," he said.
And he certainly appears to have risen to this challenge.
"You've only got to show me a recipe or I've got to catch sight of something on the TV and I know how to recreate it," he said.
Not that Phil does not miss the traditional foods he ate before his diagnosis.
"Being a late onset coeliac it's things you'd previously eaten that you miss, like pork pies, but I've figured out how to make them. I'm also a big fan of haggis, which contains oatmeal, but I've managed to track down a rice-based haggis," he said.
Phil also misses the odd tipple, as beer is a no-no for coeliacs.
"Being someone who previously adored beer to someone who can't drink it was quite a shock," he said.
However, Phil does not have to be completely teetotal, as he can drink cider, spirits and wine.
Even if coeliacs can master eating properly at home, going out for a meal presents a whole new set of problems.
Phil said: "You go through the menu and you choose something you think you might be able to eat and you have to send the waiter to the kitchen to find out. Dishes that you think are gluten-free are not, because somewhere along the line they've used wheat flour to thicken a sauce or to coat the meat.
"You end up eating a steak, and you end up with vegetables, and you take a chance on the chips."
Because of the ingredients used, Chinese meals are out of the question for Phil, as are Italian ones, although he can eat risotto – providing the chefs haven't used water in it which had previously been used to boil the pasta.
All is not lost, however, as with the exception of naan and chappatis, Phil is able to eat most curries and side dishes.
But on the whole, there is a distinct lack of choice.
"It's either a curry or a steak," Phil said. "It really plays havoc with the social life, because you really are stuck."
Since Paul has been observing a strict diet, he has seen a remarkable improvement to his health, although his spine has been weakened by the osteoporosis.
As well as watching what he eats, he has to monitor his weight and also ensure he consumes lots of calcium to counteract the effects of the osteoporosis.
Despite all of this, Paul remains cheerful and lively and clearly makes the most of his life, enjoying trips abroad and painting in his retirement. He is very well educated and informed about his condition, and has to be well organised in order to minimise the impact it has on his life.
Is he still surprised where gluten sneaks in?
"I've reached the point now where it's not a surprise for me, but it's a constant vigilance that what you've had in the past doesn't have its recipe changed," he said.
Factfile: coeliac
Coeliac disease is not a food allergy, it is an autoimmune disease caused by intolerance to gluten.
Damage to the gut lining occurs when gluten is eaten.
There is no cure or medication for the condition, the only treatment is life-long adherence to a strict gluten-free diet.
Without a special diet, the disease can lead to other conditions, such as malnutrition, osteoporosis, bowel cancer and also can cause infertility problems.
Because coeliac disease is recognised as an autoimmune disease, some patients are able to get certain basic foodstuffs on prescription from their GP.
More online: www.coeliac.co.uk - 'Coeliac UK - The charity for people with coeliac disease and dermatitis herpetiformis'
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