Kilkenny Mum Emma Power talks about the big adjustment to her son Lucas' life as a coeliac

Getting through lockdown was hard enough, but for Emma and David Power who live near Castlecomer, the isolation of those times was compounded by the diagnosis of their son Lucas, 11 as a coeliac. The then eight year old was diagnosed just before the first lockdown and as Emma recalls: “It was a big adjustment.”

Lucas suffers from congenital Hypothyroidism, where the thyroid doesn't create and release enough thyroid hormone into the bloodstream. Coeliac disease can occur in tandem with the condition and because Lucas was having blood tests on a regular basis, antibodies for coeliac disease were detected. 

Emma recalls that Lucas was already a fussy eater pre-diagnosis so it was a difficult time for them. They had limited access to a dietitian because of Covid-19. She says: “We were into lockdown then and we got an appointment. We went to one, I think all three of us.” 

Subsequent consultations were over the phone because of lockdowns. 

She says of Lucas: “He still won’t put anything into his mouth and try new foods. He’s really, really reluctant. He was always a bit of a fussy eater and this moving to the gluten free diet has made him fussier.”

Organ donation continues to change lives in Kilkenny and across Ireland

Coeliac children are at higher risk of nutritional deficiencies so the variety of food they consume is very important. 

Alfonso Rodriguez-Herrera, of the department of Paediatrics in Saint Luke's General Hospital in Kilkenny highlights how undiagnosed or untreated children are at higher risk of developing autoimmune thyroid diseases, have stunted growth, lower than average weight gain, and can suffer from anaemia.

Speaking of a new paper for the EU he co-authored he says:  “Currently we do not test enough for coeliac disease and when we do find a child suffering, it can take, in some cases, between 12 and eighteen months for any follow up care to be implemented. In our paper we recommend that this happens within three to six months and for the long-term health of the child that there are regular follow up consultations. This is something that there is little evidence that outside some hospital settings is happening due to a lack of qualified dietetic resources across the whole medical system.”

Emma has yet to have her other children tested for coeliac disease but says of herself:  “I feel I might be a slight bit intolerant … I don’t know if I’m a  coeliac, I always had trouble with my stomach. Always…. I should just book the others in and probably ourselves.” 

The Coeliac Society of Ireland recently called on the Government to set up a central register for people with coeliac disease after it emerged that the number of people suffering from the condition could be 50% higher than previously thought. New international research suggests the number of coeliacs in Ireland is likely to be 75,000, rather than 50,000.

One of the most anxious aspects of having a child who is a coeliac is exposure to gluten outside the home. School, sleepovers, birthday parties and  sports clubs all present potential problems. To this end Emma must always plan ahead when it comes to Lucas’ diet. She outlines:  “We go everywhere with supplies for him.” His teacher has also been made aware of his status as a coeliac. “We went into school when he was diagnosed, to make sure,” Emma says. 

It is hard for Lucas not to be able to share the food treats that his friends can indulge in. He adds himself that he ‘misses the Happy Meals at McDonald's' as their french fries are the only gluten free option on their menu. 

How to get a Covid-19 booster vaccination in Kilkenny

A quick guide to how, where and when you can get your booster

For Emma, this lack of choice is also hard. She says: “I find that the hardest. In fairness, he has adjusted - it did take a while. He is a lot more accepting of it - there is not much of a choice for him.” 

However she concedes that Lucas’ friends and their families are very good: “When he goes over, they're very aware.” Ditto with her own family: “For birthday parties the cousins and David’s sisters would always … if they're having cake, they'd have the same for Lucas in a gluten free option.”

Emma also finds confusion around gluten free foods in the food industry an issue. She continues:  “We’ve gone to places where it advertises gluten free and it’s not. We were at Tramore last year and there was kind of a vendor outside and the chips were gluten free and we were like ‘great’. 

However Emma then saw the vendor cooking the chips along with items in the same fryer as foods containing gluten, thereby cross-contaminating them. She says of this common misunderstanding: “It’s so frustrating.” 

Her caution is necessary as eating gluten makes Lucas very ill. Emma notes:  “We’ve seen it twice where he’s vomited several times.”

Life isn’t simple for a coeliac child - as Emma says there is gluten in things you would never suspect including sweets, ice lollies and toothpaste.  

She says: “Lucas could sometimes go, ‘Will I risk it - will I , won’t I?’”  

She continues: “I’m like please no, don’t.”

Emma would like to see more support for parents of coeliac children especially in the initial period post diagnosis. Regarding a dietitian she says:  “We’re waiting on a new appointment so hopefully we can  get to go in and see them - to try to expand his diet.” 

“He eats very much the same stuff, always. Lucas has a real beige diet … I’d like to see a little bit more colour.”

Lucas was taking dietary supplements of Vitamin D and Vitamin K up until three months ago and Emma concedes ‘he’ll probably end up back on it over the winter months’.  

Emma, Lucas and the entire family are still adjusting to him as a coeliac. “Even though it could have been a lot worse, it was still quite upsetting to hear it was going to be a life change for Lucas. You know, he already has another life condition that he’ll always have to take medicine for. It was tough for me and I wasn’t even diagnosed.” 

The expense attached to a gluten free diet  is another issue Emma highlights. She says: “It’s more than twice the price for some reason. …  I do notice Lucas is nearly a separate shopping bill you know. You could be talking €60 or €70 for Lucas’ stuff alone…. That could be  a challenge for a lot of people.” 

She also notes: “I was enquiring about tax relief and they wanted a letter of diagnosis. In the end I actually haven’t followed up on it because it wasn’t straightforward.” 

For now it is still a learning curve for the family. Emma ends: “ I think we’re doing everything right - we’ve separated everything in the house.”  

Like any mother she would however still like to see more options and support for Lucas. 

“I’d really like to see a bit more available.”

More information for parents with coeliac kids is available from coeliac.ie