Emma Killion’s husband, David, used to remark at evening bath time how their two-year-old daughter Martha’s tummy was “huge” compared with that of her twin sister Rose.
“I was very dismissive,” says Emma, who put it down to nothing more than Martha, an enthusiastic milk drinker, having a full tummy because “otherwise she was absolutely fine”. Whereas Rose had an issue with a small hernia and she was seeing a consultant at Temple Street hospital who was monitoring it.
It was when they were in with that consultant for Rose’s check-up, Emma says, “that, David, much to my embarrassment said, ‘while we’re here….’, shoving the other child forward, ‘she has a very swollen tummy’. I was cringing but then, in a split second, everything turned because when the consultant lifted up her T-shirt, I knew by his reaction, instantly, he thought it was something.”
Her mind began to flood with guilt about how David had been pointing out a possible issue for months and she had been ignoring it.
“There was probably about five minutes when I could have thrown up. Your mind always goes from 0-100, I had ‘tumour’ and everything…” The consultant assured them he didn’t think it was that but they would need to run tests. He thought it could be coeliac disease.
Emma and David knew nothing about the condition, so the suggestion came “completely out of the blue for us”, says Emma. “I don’t think I could have even spelt it!”
A sample of Martha’s blood was taken straight away and sent for testing. About four days later the consultant rang to say she had coeliac disease and that the markers were so high, he would like to run all the tests again, but to leave her diet as it is. The second tests once again showed very high levels of antibodies. The consultant said he was amazed she showed no other symptoms but he had no doubts it was coeliac disease and there was no need to do a biopsy confirmation in a child so young. The rest of the family was then tested for it but all came back negative.
Emma’s first thoughts were how would they protect Martha. “You step into your house and know that everything in your cupboards is basically a poison.
“I took a very clinical approach and we all went gluten free – partly because of her age and because she had a twin and their brother was five. Food was very much everywhere and it was going to be very unmanageable just to have her gluten free and nobody else.
“Everything came out of the cupboards – was chucked away or given to neighbours, and I started from scratch.” To this day, five years later, the house is gluten free.
She wanted a situation where Martha, now aged seven, could go to a cupboard and nothing there would be unsuitable. Emma still can’t face the need for separate chopping boards, separate toasters and constant vigilance against cross-contamination if they were to have gluten in the kitchen.
Although, in term time, their son Henry (11) always takes a wrapped cereal bar in his lunch box to school, so he is consuming at least one thing with gluten every day. Rose doesn't get one because she sits at the same table as Martha in St Matthew's National School in Sandymount.
Temptation will be much more manageable; the payback of suffering does put you off
Martha now has quite a severe reaction to any gluten, vomiting and feeling very flat for hours afterwards. There were a couple of incidents in her Montessori school before they realised it was spelt in the crackers that was causing her to become unwell.
The external reaction to gluten could change as she gets older. However, Emma says that part of her “selfishly hopes” her daughter will have the same severe reaction in her teens as that would be a deterrent to straying from the diet.
“Temptation will be much more manageable; the payback of suffering does put you off.”
Although Martha’s two siblings can eat whatever they want outside the house, Rose, when with her sister, won’t accept a sweet if it’s one that Martha can’t eat, in solidarity with her twin.
Emma regards the absence of party and play date invitations as one bonus of the Covid era. “The control over her food is 100 per cent at the moment – she has had 18 months of being very controlled and the transition out of that will be difficult.”
But she acknowledges that she has to let the luxury of that control go “because if you’re too controlling or don’t have any trust, it permeates into her and she loses her trust in things. Then it becomes a psychological impact which, ultimately, is probably the most dangerous thing of it all. You begin to have a fear of food.”
Emma believes the gluten-free fad of recent years has “muddied the water”. While it has driven a huge increase in the range and availability of suitable foods, lack of understanding about cross-contamination persists because that doesn’t affect people just choosing to avoid gluten.
She sees cafe staff serve a regular slice of cake and then use the same pincers to serve a gluten-free cake, “which is okay for somebody who doesn’t want to eat wheat because it makes them feel bloated but not for those with coeliac disease”.
Martha is also private by nature and increasingly struggles with any attention being paid to her different food
A well-meaning party host may have bought gluten-free options specially for Martha, “but how do you say to a parent, I don’t know if your tray is clean… I’m not going to go there”, says Emma. Instead, she asks what will be served at a party and then sends her daughter with a box of gluten-free equivalents.
“The school has been exceptional and in her class it has always been agreed that no birthday cake is allowed in – so it is sacrifice for all the other children,” she says. A list of gluten-free sweets has been agreed instead as a treat for any birthday, although Emma admits she cringes at what other parents may think about her seemingly dictating what the class can and can’t do.
Martha is also private by nature and increasingly struggles with any attention being paid to her different food. The twins are generally invited to parties together and Emma finds it hard to be assuring one daughter that she can eat anything, while the other one has to bring her own food.
“As much as we are in it with Martha,” she adds, as her daughter plans what the whole family is going to do for the Coeliac Society of Ireland’s 5 for 500K challenge on July 24th, “ultimately, she is in it on her own”.
