In the beginning, Linda Forster put the tantrums down to her youngest daughter simply being a demanding baby. From the day she was born Aili would bawl almost nonstop.
She refused to be left alone but would scream if anyone other than her mother tried holding her. Dad Pawel, 43, an interior designer, couldn’t get close without sparking tears.
“Our oldest child Victor, who is now eight, had been such an easy baby,” recalls Linda, 39. “So it was a shock. Aili had been born slightly prematurely but there was nothing to suggest that she had health problems. When we talked to doctors they told us it was common for some babies to cry more than others, and things would improve.”
They didn’t, though. In fact, at around 18 months things went dramatically downhill.
After suffering a severe bout of pneumonia Aili’s crying became even more incessant. More worryingly for the family, of Mirdif, Dubai, she now appeared unable to keep her food down. “She started vomiting almost every time she ate and suffered terrible diarrhoea,” says Linda. “We got so used to having to clean up sick we’d leave towels round the house.”
Being unable to retain food meant that the youngster was also unable to retain vital nutrients. She stopped developing completely and fell off the growth chart. At an age when most babies are beginning to walk, she couldn’t even stand.
Doctors placed her on a weekly drip to ensure she received the nourishment she needed. And yet medics remained baffled. Test after test – for blood diseases and cancers, respiratory problems and parasites and reflux – came back negative.
“It was like living in fog,” says Linda. “We were so tired from not knowing what was wrong and yet we still had this screaming child. I remember one morning, after she’d vomited, turning to Pawel and saying: ‘How can she live if she can’t keep her food down?’ We were watching our little girl slowly die.”
At it’s worst, she was being sick after virtually every meal.
Eventually, almost as a last resort, a medic suggested testing for gluten intolerance. “I was told it was a long shot and the insurance company probably wouldn’t pay for the test,” says Linda, a housewife who is originally from Sweden. “I said I didn’t care, just do it.”
The results came back positive. Aili was diagnosed with coeliac disease, an intolerance to gluten that causes the body to attack its own immune system. Essentially, almost every meal she’d ever eaten had been poisoning her.
“She was almost skeletal by then,” remembers Linda. “We found out just in time.”
For Linda and Pawel, the diagnosis left them relieved – “now, at last, we could help our baby” – but somewhat dispirited. “I remember the doctor’s advice was: ‘Do not let her eat gluten, here’s a leaflet, good luck’,” says Linda.
“I walked out feeling utterly lost. Our life had just changed forever, and we had an A5 leaflet for guidance.”
Worse still, the more that she and Pawel researched, the more they realised just how difficult things could prove.
“I went home that first evening and had to throw away half the utensils in my cupboards because once they’ve touched gluten most are contaminated for ever,” recalls Linda. “Then I had to trail around supermarkets, checking the ingredients of everything to make sure there was no gluten.
“I had to start baking my own bread. Takeaways were out. There were virtually no cafés or restaurants we could go to. Gluten became my nemesis. Even something like chicken stock cubes contain it.”
It was while trying to adjust that she looked online for support groups in the UAE – and found nothing.
“In other countries there are huge networks for the newly diagnosed,” she says. “I craved this. I needed help and advice from people who had been where I was. I put every combination of words I could think of into Google and nothing came back.
“I even had a friend search in Arabic. But the only thing I found was from an expat forum where a visitor had asked if there were any gluten-free restaurants in Dubai. No one had answered.”
So, she decided to do it herself. In April 2011, just a fortnight after Aili had been diagnosed, Linda decided to create Gluten Free UAE, a website and support network to help other people affected by the intolerance.
Within two days of setting up the Facebook page, some 50 members had signed up. Within two weeks a first coffee morning had been arranged. Thirty people turned up to listen to a dietician’s talk before sharing their own experiences – and recipes.
“It was exciting,” says Linda. “Part of me felt guilty that Aili had suffered so long, but setting up this group felt like I was taking that and turning it into something good. But, personally, just knowing other families were going through the same thing really helped. Suddenly we didn’t feel alone.
“That gives you the strength to not only accept the situation but to go out and make a difference.”
In the four years since, Aili has bloomed. The five-year-old is now an average weight and size for her age, and she hasn’t been seriously ill since.
“I look at her every day and am so grateful we got this diagnosed,” says Linda. In those same four years, Gluten Free UAE has grown too. It has help thousands of people, influenced a cultural change in supermarkets across Dubai and assisted several city restaurants to create gluten-free menus. It’s become an informal advisory body and occasional campaigning initiative.
Monthly coffee mornings were established, a proper website was created to share information virtually (www.glutenfreeuae.com), and members were encouraged to try and improve things in their local shops.
“It wasn’t a formal campaign,” says Linda. “But, for example, I went into my local supremarket in Mirdif and asked to speak to the manager.
“At first I basically told him that there were gluten-free items right next to flour, which meant they were almost certainly contaminated. I suggested he should create a gluten-free section. My argument was that there are at least 5,000 intolerant people in this city. If they know there is a shop catering for them, they would go there. It would be good for business. In a matter of days, a gluten-free aisle was created. So then I moved on to more supermarkets - Spinneys, Carrefour...”
Meanwhile, as web traffic grew, restaurant owners started getting in touch. Several wanted advice in creating gluten-free menus. Others – including Balance Café in the Oasis Centre and Italian chain Carluccio’s – asked Linda to come and train their staff. “It was wonderful,” she says, “to feel you were creating a city that was safer and healthier for sufferers.”
Certainly, while gluten intolerance is still little discussed, there are many such sufferers.
Although it affects around one in 100 people globally – with 5,000 known sufferers in Dubai – for those diagnosed with this genetic and lifelong illness, the world suddenly becomes a far more complex and dangerous place.
Sufferers cannot eat gluten, a protein found in wheat, barley and rye. In the short term not adhering to restrictions causes considerable pain with symptoms including diarrhoea, nausea, vomiting, constipation, headaches and even hair loss. But, in the long term, it will destroy part of the body’s intestine, resulting in vital nutrients not being stored.
That means, while coeliac disease in itself isn’t recognised as being fatal, it slowly reduces a person’s health making them more vulnerable to other illnesses as well as malnutrition.
If a sufferer keeps eating gluten they are effectively reducing their body’s defence system.
Though coeliac disease is more severe than simple gluten intolerance – which generally causes all the discomfort but without the long term effects – the only solution is the same. Cut out the gluten.
“That means 50 per cent of the average kitchen cupboard is suddenly off limits including your most basic staples like bread, pasta, and flour,” says Linda.
Cakes, baked beans, cereals, some cheeses, most spices, instant coffees and curry powder are all also generally unsuitable.
If you want dressing on your salad, too bad. Ketchup tends to be a no go too. Anything with flavouring, colourants or starch is out. Treats like soft drinks, ice creams, custard and even many dried fruits become a thing of the past. Even toothpaste, depending on the brand, isn’t necessarily safe because some brands have gluten in them.
“It’s all encompassing,” says Linda. “And the potential for cross-contamination is really surprising. I had to throw away my chopping board because the groves in it would contain traces of gluten no matter how well the board was washed.”
Indeed the proof that Gluten Free UAE was needed can perhaps be seen in the sheer numbers of people who have got involved.
Emirati university student Reem Al Ali, was one. The 20-year-old from Abu Dhabi was diagnosed with coeliac in 2012 after years of suffering with abdominal pains.
“When the doctor told me I had coeliac, he had literally no other information,” she says.
“I had to go home and do my own research. That’s when I stumbled upon Gluten Free UAE. It was so useful I can’t even imagine how difficult the last couple of years would have been without the group.”
Wendy Allcorn, of Dubai Sports City, agrees. The 36-year-old’s son Leo – who is now seven – was diagnosed with coeliac in 2010 before the group was set up and says the difference it has made has been huge. “There’s been a general rise in awareness about gluten intolerance,” she says. “But I would say lots of that has been driven by this group.
For Linda, knowing that just one parent might be saved the heartache that her family went through makes it all worthwhile.
“I always remember a moment just after Aili had been diagnosed,” she says. “She pointed at her tummy and said ‘Mummy, owie all gone’. It was such a relief. If the group can continue to help parents before they get to the desperate stage we were at, that’s the most important thing.”