New group aims to help coeliacs settle down to life without grains
When tennis pro Mr. Derek Singleton was told in 1984 that he was a "coeliac'', it turned out to be good, rather than bad news. When he switched to a diet free of most grains, he was able to enjoy good health for the first time in his life.
Now, he and a group of fellow coeliacs have formed the Bermuda Coeliac Support Group, with the aim of informing the public about this little-understood disease, to contact others who may be coeliacs and to help, in a practical way, those newly diagnosed with the disease and to assure them that there definitely is "life after gluten.'' (Gluten, which coeliacs cannot tolerate, is a naturally occurring protein found in certain cereals, like wheat, rye, oats, barley and triticale.) With Mr. Singleton as President, the committee consists of Mrs. Liz Boden, Mrs. Monica Jones and Mrs. Lynn Pimental, and a first, informal get-together for the 30 or so known coeliacs and their spouses has been arranged for Thursday evening, April 30. It is thought that there may be around 40 coeliacs in Bermuda.
"The only member of the committee who is not a coeliac is Mrs. Jessica Wade,'' says Mr. Singleton.
"She was the one who got us all together, and as the hospital dietitian, she has been a wonderful help, advising us on the foods we are able to eat,'' Mr.
Singleton says. He feels the group is fortunate since Mrs. Boden is a doctor's nurse and has "good contacts'', Mrs. Jones is a lawyer who is arranging to have the group registered as a charity, and Mrs. Pimental is co-ordinating gluten-free foods available in Bermuda.
"The situation is gradually improving and Miles Market is bringing in a full range of products this month,'' he says.
Another of the aims of the group is to raise awareness of coeliacs' problems with restaurants and hotels.
Coeliac disease has been around at least since the ancient Greeks gave it a name, which, appropriately enough, means "gut''. In this condition, the gluten damages the lining of the small intestine so that the protective, minute projections of hair-like substance, known as "villi'' are flattened.
As a result, the gluten is passed straight through the gastro-intestinal tract. Gluten intolerance is also responsible for a skin-related disorder called dermatitis herpetiformis.
The first breakthrough in controlling the disease (there is no cure) came in the 1950's when a dramatic improvement in the health of children suffering from coeliac was noticed when grain products from North America to Europe were disrupted and a staple diet of potatoes was substituted.
Since gluten is the protein portion of wheat, barley, rye and oats, complete abstention from food and drink containing even traces of these grains is essential. At present, this is the only known treatment. And as gluten is often hidden away, sometimes in small but still dangerous amounts in many prepared foods, coeliacs find that much of their time is spent peering at the lists of contents labels. In fact, perhaps the principal message to the newly diagnosed coeliac is: "Read every label every time you shop!'' Mr. Singleton says this is essential because manufacturers often change ingredients and foods that are supposedly gluten-free may in fact contain the villainous substance.
"For instance, Kellogg's Corn Flakes was listed as safe. Then it was found that the caramel and malt coatings did contain gluten. That small amount was sufficient to make people very sick, so they have now brought out a new product for us.'' In fact, as awareness of coeliac disease has increased, more and more companies are marking their products with the gluten-free international symbol.
The change to a gluten-free diet will initially be something of a shock for the newly diagnosed, since any food or drink containing even a trace of the forbidden substances means that many favourites will have to go.
"On the other hand, there are lots of good things we can eat, such as all fruits, vegetables, meats, fish and poultry, wine and distilled drinks,'' he says. The new coeliac -- and certainly the person who cooks for them -- has to become something of a super-sleuth, tracking down and testing foods that may contain gluten. It is often during the preparation that unwanted ingredients creep in... even a dusting of flour on the stew meat, for instance, will be enough to make a coeliac patient ill.
Indications are that coeliacs who strictly observe the diet rules are healthier than the rest of us. As Mr. Singleton points out, though, "Sometimes, coeliacs do put on weight -- because it's the first time in their lives they've ever been able to keep food down!'' Gluten intolerance can affect anyone of any age, sex or race. The disease can surface in childhood, or sometimes not until later and there is still no clue as to why some diagnosed children appear to recover, only to relapse as teenagers.
Mr. Singleton advises that anyone who thinks they may have the symptoms of the disease should contact their family doctor who will then refer them to a specialist for tests that can now be done in Bermuda.
"One of our aims,''says Mr. Singleton, "is to emphasise a positive approach.
Once a person gets over the initial shock, there are, in fact, a surprising number of things that we can eat. It's a very healthy diet and we are lucky that we don't have to take any unpleasant medication to control our condition.'' Suffering since childhood from constant bouts of vomiting and diarrhoea that left him exhausted, underweight and spending long spells in hospital, Mr.
Singleton says that for many years, he simply accepted his condition. "I didn't know any different -- I thought everyone felt like that!'' When the disease was finally diagnosed and he began to eat gluten-free food, the change was almost instant. "I felt better the very next day and was soon feeling better than I had ever thought it was possible to feel,'' he says.
It is hoped that anyone diagnosed with coeliac disease will join the new support group. "We would love to see as many people as possible turn up on April 30,'' says Mr. Singleton.
The number to call for further details is 236-6495.
MR. DEREK SINGLETON: There is life after gluten.