Like many babies born prematurely, two-year-old Aili had a difficult start to life. It took a while for her to catch up with her peers and she was often ill. At the age of two, however, her health took a worrying dive, according to her Dubai-based mother, Linda Forster, 35.
"She was vomiting on and off," says Forster. "She had diarrhoea; she wasn't eating and she stopped growing completely."
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Last Updated: 21 June, 2011 UAE
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Concerned, she started looking for answers, and eventually her doctor arranged for Aili to be tested for coeliac disease. This is an autoimmune disease, suffered by about one per cent of the population, in which the body reacts to gluten (a protein found in wheat, rye and barley) by attacking the lining of the small intestine.
According to Alex Gazzola, the author of Coeliac Disease - What You Need to Know (Sheldon Press, 2011), it is notoriously difficult to diagnose.
"Symptoms in a child are failure to thrive, abnormal (pale or runny) stools, lack of appetite, weakness and behavioural issues. In adults, they include gut symptoms, tiredness and neurological complaints. All of these could mean other problems - such as bowel disorders or other food intolerances - so it can take a while to get to the bottom of them."
The test showed that Aili did, indeed, have coeliac disease and her mother was sent home with instructions to cut gluten from Aili's diet, but no other information. It was at this point that she realised how little is known about gluten-related conditions in the UAE, and how little support there is for sufferers.
"It's really hard here," she says. "In the UK, if you get your diagnosis you'll get help from a dietician, you'll get leaflets giving you information, and there's a support network. Here, there is absolutely nothing. We were told, 'Don't give her any gluten; good luck'."
Left to her own devices and with little information to help her, within half an hour of the diagnosis Forster had unwittingly fed Aili French fries containing gluten; she had yet to learn just how many products contain hidden gluten.
As the nutritionist Stephanie Karl, of Dubai London Clinic, explains: "Management does require good housekeeping and plenty of knowledge ... Even dried fruit can contain gluten as the fruit is coated in gluten to stop it sticking. A dietician will help you clarify what foods are in and what are out."
Undeterred by her initial setback, Forster educated herself with the help of the internet and started her own support group, Gluten Free UAE. She received help from the Organic Foods and Café in Dubai, which stocks gluten-free products and helped to spread the word about the group. Gradually, membership began to grow.
Gluten Free UAE now has around 300 members in its Facebook group (www.facebook.com/glutenfree.uae) and around 200 followers on Twitter (@glutenfreeuae), where members share information, advice and suggestions. They also have regular meetings in Dubai and plan to expand into Abu Dhabi.
One of the major gripes among members is the cost of gluten-free products in the UAE, which are considered to be disproportionately high; another is availability.
David Jackson, 53, an English expatriate living in Dubai, was diagnosed with coeliac disease in 2007. "It's slowly getting better with more supermarkets carrying gluten-free products, but they tend to be scattered all over the store rather than be centralised in one location as in Europe. The range of products I see in the UK is not available here and it's very much a case of buying what is available rather than what you would like."
Another common point of discussion among members of the group is how to ensure that children with coeliac disease are safe at school. Coeliac groups in the UK and the US provide letters for teaching staff and school nurses explaining the needs of children with coeliac disease, and Forster has plans to produce one for schools in the UAE.
"Very often, the school nurse won't actually be English-speaking, so the language in those letters just isn't suitable," she says. "We would like to get a letter written in Arabic."
Overall, though, Forster has found that although coeliac is not widely understood in UAE, people are willing to learn.
"The nursery and everyone I've met so far have been so supportive," she says. "Our local pharmacist has spent hours trying to find medication for my daughter without gluten in it. It's heartwarming how much support we have received."
Aili's story has a happy ending; since she changed to a gluten free diet, her health and happiness have been transformed.
"She used to scream all the way home from school," says Forster. "We now know that's because she was in agony; it was lunch kicking in. Since she stopped having gluten, her personality has changed, her behaviour has changed. She sleeps, she eats, she's happy."
The experts are keen to emphasise, however, that anyone worried that they or their child might have coeliac disease or a gluten intolerance should not self-diagnose.
"It is very important to have your condition diagnosed correctly and quickly," says Karl, "as trial and error leads to a very long-winded procedure with much unnecessary suffering. It is also very common for people to diagnose themselves from anecdotally removing gluten, but it can lead to nutrient deficiencies and restrict a healthy eating plan as well as restrict the intake of good fibre and B vitamins. A test is very simple and inexpensive."
Gazzola agrees. "You shouldn't remove gluten from your or your child's diet even if you strongly suspect it's a problem. Get the tests performed first or they may not work. Never self-diagnose or diagnose your child. Go through the proper channels and be firm and persistent until you get to the root of the issue. Often it won't be coeliac disease."
Even if you do end up with a positive diagnosis, it needn't blight your life; if you're careful to read food labels and stick to gluten free products, you can be just as active as anyone else.
David Jackson is a striking example of how the disease needn't hold you back: "I did an Iron Man Triathlon this year," he says, "and didn't have any real difficulties training gluten-free. I was here in Dubai or in the UK throughout my training and thus was able to gorge myself on gluten free pasta and pizza as much as I wanted. My advice to a coeliac would be not to get too hung up about it all. Life is for living and it could be a whole lot worse than being a coeliac."
The next meeting of Gluten Free UAE will be at Organic Foods & Café in Dubai Mall on Saturday at 10am. More information is available at www.glutenfreeuae.com
