Coeliac disease awareness week: Kiwi mum Sam Lowe's struggle with auto-immune disease

Archie Lowe, 9 months, loves kisses from mum Sam Lowe. But kisses the other way can spell disaster for Lowe, who has coeliac disease, but is feeding her son food containing gluten. Photo / Alex Burton

Archie Lowe loves to blow raspberries as his mum spoons food into his wee mouth. He loves to give kisses too, big slobbery ones right on the lips.

Both could be more than messy for the 9-month-old's mum, Sam Lowe. They could make her sick.

Lowe, a self-confessed bread lover, was diagnosed with coeliac disease five years ago and, after a couple of years struggling to keep the troublesome proteins out of her house, had mastered the gluten-free kitchen.

Then came the little boy whose mum now wanted to do everything possible to reduce the chance of her son developing the same auto-immune disease.

She was on top of managing a gluten-free life, but she still wanted different for her son, Lowe said, sharing her story as part of Coeliac Awareness Week, which begins today. "Hopefully he'll have a long and happy life eating gluten. That's my dream for him."

Archie Lowe is 9 months old and loves his daily porridge. Photo / Alex Burton

But among the many troubles sparked the nationwide level 4 lockdown was that of a mum with coeliac trying to start her son on foods containing gluten.

"Archie has a predisposition for coeliac disease, because I have it. So the best thing for him to do is eat gluten. So my plan was that when he's at his grandparents' house, they can ply him with gluten, because my house is gluten-free.

"But of course this Covid thing happened."

Archie needed to start eating gluten but he couldn't leave his bubble.

Lowe had to introduce a food into her house - rolled oats - that she knew could make her sick.

The threat, expelled by a cheeky little boy, was immediate.

"He'd just learned to blow raspberries and I was feeding him his porridge and he was blowing raspberries in my face … he'd ask for food and it would go from here to Christmas.

"Kids don't get it. He thinks it's hilarious."

Sam Lowe and her son, 9-month-old Archie Lowe. Sam, who has coeliac disease, has been introducing Archie to foods containing gluten. Photo / Alex Burton

She had managed to keep her mouth closed as flying bits of porridge came her way.

Kisses on the lips were harder to avoid, so wee Archie's hands and face were washed the moment he stopped eating.

The situation might sound easily managed to those who are not coeliac sufferers.

But the hardest part of living with the disease, which she was diagnosed with following a blood test and biopsy, was the anxiety of getting "glutened", Lowe said.

Being glutened caused her a range of symptoms, from feeling faint to bloating, nausea, stomach cramps and lethargy.

"I loved bread, cake, biscuits, all of that. It took me a couple of years not to desire that food. But when you cut it out you feel so good."

The 31-year-old Aucklander wanted to give hope to others affected, especially those early in their diagnosis and struggling to cut out foods containing gluten.

"I know it's crazy in the beginning. It's like everything's been taken away from you, like lockdown but with bread … but just stick it out."

Coeliac disease - what you need to know

• Coeliac disease is a permanent autoimmune disorder where the body's natural defences mistake gluten for a threat and release antibodies to fight it, leading to inflammation of the bowel and a host of related symptoms and medical problems

• An estimated 60,000 to 70,000 Kiwis have coeliac disease, but up to 80 per cent are unaware.

• If undiagnosed, the disease can cause long-term poor health, osteoporosis, depression and increased risk of throat and intestinal cancer

• The average time between symptoms and diagnosis is 11 years, and undiagnosed sufferers often have anaemia because of associated problems absorbing nutrients

• Symptoms can include digestive problems, such as diarrhoea, cramping, nausea, vomiting, bloating and constipation, bone and joint pain, neurological issues, skin rashes, ulcerations, weight loss, fatigue and brain fog. Some people have no symptoms

• Coeliac disease tends to occur in family groups — 10 per cent of each sufferer's direct relatives usually have the condition too

• The only treatment for the condition is to avoid gluten, which can be found in wheat-based bread, pasta, cereals and many food starches, preservatives, soy sauce and stabilisers made with wheat. Gluten can also be found in some medicines, vitamins and lip balms

• A self-assessment test for the disease is available on the Coeliac NZ website at www.coeliac.org.nz