Parental Tips for Supporting Coeliac and Gluten Free Kids
Joanne Wynne shares her personal insights on supporting children with coeliac disease and a gluten intolerance
Hey Gluten Free Fam,
We understand living with coeliac disease as an adult remains a major challenge. For those raising a child with the autoimmune condition, you have to overcome extra obstacles. How do parents meet the moment and ensure their kids remain healthy and protected?
Ben had Joanne Wynne on Episode 202 of A Gluten Free Podcast to address the subject. The founder of The Coeliac Connection and author of ‘Surviving the First Year of Childhood Coeliac Disease’ goes into detail about her daughter’s diagnosis, and what lessons it taught her that others can learn from.
At whatever stage your child may find themselves, from diagnosis to the gluten challenge or taking part in tests with medical professionals, Wynne’s advice is well worth your time.
Honesty with Coeliac Blood Test Process
Anyone exhibiting symptoms for coeliac disease or a gluten intolerance should contact their trusted medical provider for a blood test. This is designed as an initial screening, detecting potential antibodies that may react to gluten when exposed.
While most adults are happy to accept this process, it’s a serious challenge for adults to see their child have blood withdrawn. For Wynne, there are some coping mechanisms to apply, but honesty is the only policy.
“We say, ‘Look, you have to get it done,’” Wynne recalls. “It's going to hurt. I'm honest with my kids… I say to them, ‘It is going to hurt. It's going to be painful, but it will be for one minute.’ So we put on YouTube. My daughter puts headphones on so that all she can hear is sound. We distract. They watch YouTube.”
If there is something comforting to provide them during the test, as well as something to look forward to after it's all over, that can reduce the distress.
“She used to take a cuddly toy that she could just kind of bury her face in,” Wynne says of her own daughter’s test. “Then the second it's over, it's whatever reward we have promised them. When she was first diagnosed, it was a 7-11 Slurpee.”
Handling the Gluten Challenge
To achieve an accurate coeliac diagnosis, one must consume enough gluten prior to a small bowel biopsy. This leads to what is known as the ‘gluten challenge,’ a painful process for many who react adversely to the protein, but it remains the gold standard to know with 100% clarity if you’re positive for coeliac disease.
Once again, this creates additional hurdles for parents who are navigating the issue with their child. Wynne told Ben on the podcast that her daughter’s GP would instruct her to write down all of the must-have items she wanted to eat. In many respects, this was permission to enjoy all of the menu items she ever wanted to try.
“The night that her gluten challenge started, she just sat at the dining table in her ten-year-old spelling and wrote (her list),” she outlined. “It almost ended up being two A4 pages of food she wanted (like) fish and chips, McDonald's, cheeseburgers and nuggets. She wanted every food she'd been missing (and) put (it) on this list.”
Wynne’s daughter would have to overcome further problems at the time during COVID lockdown restrictions, turning a traditional 6-week challenge into a mammoth 18 weeks. To add more pain, the waiting list for a scope following a positive blood test is an extra 12-18 months. However, so long as your child consumes a minimum of two servings of gluten a day, every single day for at least 6 weeks, their biopsy test will return an accurate reading.
Setting Up a Safe Gluten-Free Home Environment
With Wynne having multiple children under the one roof, she knew that a new gluten free member could not overhaul everything in the house moving forward. The author explained her process and the rationale behind keeping gluten available for those that continued with a regular diet.
“My first thing is don't make everybody gluten-free,” Wynne remarked. “Don't make your kitchen exclusively gluten-free. If you've got kids who also have the genes, it's really important for them to keep eating gluten. If they become symptomatic, they need to be eating enough gluten to get tested. As a kid, you need those really fun life experiences of eating gluten.”
By incorporating a 50/50 split between the two domains of the kitchen, everyone knows what is safe and what is off limits. The target here is to eliminate chances of cross-contamination while allowing others to digest gluten.
“It was really important for us that our kitchen was half and half,” said Wynne. “We've got quite a small kitchen, not a big fancy kitchen. To the left of the kitchen sink, there's a smaller bench space. To the right, there's a bigger bench space with the stove top. We just went - gluten is on the left of the sink, gluten free is on the right, and they never pass. For us, (that) was an easy distinction for the kids to make. It was an obvious barrier.”
Portable Air Fryer Investment
Differentiating the kitchen space is one part of the equation, but this will require investments in new appliances to avoid cross-contamination. From Wynne’s perspective, this highlights the value of one product in particular.
“We bought a second toaster and second air fryer that is specifically gluten free,” Wynne recalled. “They've got gluten free stickers on them because I take them out with us. If we go away for a weekend or we go to a friend's house for dinner, the air fryer literally comes with us everywhere we go. I throw nuggets in the air fryer for her if all the kids are eating something else. There's really not much that can't be heated up in an air fryer. You can reheat frozen meals (and) pizza. Anything can go in the air fryer.”
Although it’s just one single appliance, the freedom and flexibility the air fryer provides has been well worth the price tag.
“That's been life-changing that she eats a freshly cooked meal if we're out at a family member's house or if we go away for a weekend… For her well-being that was probably important to just share a meal every night and not to feel different in her own home. Dinner's always gluten free.”
Labels & Clear Kitchen Distinctions
As overwhelming as a split kitchen can be, taking the time and effort to write labels and designate one area from another will pay off. Wynne’s own experience demonstrates that it can be done with a little diligence and consistency.
“We've got two lots, so anything that a knife can double dip in, we've got two of. So peanut butter, jam, Nutella, butter - anything that you could double dip in, we've got two,” Wynne explains. “The gluten-free has a massive ‘GF’ on the lid. In our fridge, we've got designated areas. Top shelf is gluten-free condiments and the door is gluten… If it's got nothing, we know the girls don't touch it. Then we put it back where it goes… You know your stuff's in the right place.”
Focus on Quality Dishwashing
To protect a child from the risks of gluten contamination, every detail counts. This extends to washing and cleaning your plates, bowls, utensils and entire kitchenware, a chore made far easier with a quality dishwasher if one is available.
“I know we're very lucky to have a dishwasher,” admits Wynne. “Not all families do. I pretty much buy anything that can go through the dishwasher because I know it's going to get a really, really good wash.”
Given the risks associated with cross-contamination and coeliac disease, even the slightest crumb could create a serious health event. In this instance, the author takes extra precautions in her kitchen space.
“If it's something that can't (handle a) hot soapy wash and a separate rinse, just make sure there's no crumbs stuck in a bubble. Anything like that we share. The only thing we've got separate is where crumbs could be trapped… We do have separate chopping boards because I don't trust the kids to wash them properly when they're using them all the time.”
Managing Events Away from Home
Like adults, kids are social beings. As much as you try and protect them at home, they need to venture out into the world, especially for social occasions. Wynne sees engagement with other parents as a means of overcoming clear struggles in these cases.
“What I like to do - and it's so much easier if you know the parent - I've had a conversation with a parent that I had never spoken to before and it was tough,” she recalls. “I like to openly say, ‘Look, she's got coeliac disease. I will prepare her food. I'm not expecting you to cater for her. You're organising a birthday party. Could you just let me know what you're going to be serving so that I can like-for-like create her food.’”
Wynne would retell a story of her daughter’s experience at a play centre for a kid’s birthday party. Not only was Wynne unable to provide her gluten free food while she was among friends, but she was forced to eat separately with parents, something that left her greatly distressed.
“That was heartbreaking for her,” Wynne revealed. “She watched all of her cousins and all of the other kids go into the party room, eat, and have fun.. She had to sit outside at the adult table with her mum and dad and her aunties and uncles. Thankfully, they were her safe adults that she was with, but she sobbed. It was awful.”
Her advice is clear - approach the establishment ahead of time and clarify why your child must eat gluten free food exclusively.
“We've found that people seem to think gluten free is only an adult issue,” she says. “It's not a kid issue, so it's not catered to in children's venues… Places you expect to be inclusive and cater to kids aren't always. So do your research, give them a call beforehand, and run through your options with them.”
The Power of Listening
All the love and effort in the world will still create problems. This is the reality of living with an autoimmune condition, particularly one that impacts everything you consume. An insight that Wynne provides is fundamental - be there to listen. You won’t solve every problem, but being there for support is everything.
“Listening to them is really the only thing you can do because you're not always going to be able to fix it,” she argues. “I can create an alternative version in those social moments, but they still know. When you put them to bed at night and they're lying in bed in the dark and they just want to have a cry, all you can really do is give them a hug and say, ‘Look, it sucks and I know it sucks and I wish it was different, but it's not and it's something you're going to have forever. We just have to make it work.”
Connection with the Online Community
Summarising many cases that discuss coeliac disease and the gluten free life often end in the same place: the online community. When you struggle to find tangible support in-person, this is the best remedy for parents who need to seek guidance from others who have been in your shoes before.
“Honestly, I don't think you can put into words how phenomenal the coeliac community is,” Wynne states. “It is a huge community, even though most people would never have heard of coeliac disease. Once you are in it, it is the most supportive, inclusive community that you can be a part of, whether you're an adult, whether you're a child. The online community is this wealth of knowledge. Get on it.”
