The silent, devastating impact of food allergies on families

Food allergies have a big impact on the mental health and relationships of families


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Mum and psychologist Sarah Butt with her children William, 5, Amy, eight weeks, and Lily, 8, is calling for more awareness about food allergy and its impact on families. Photo: Lachlan Bence

Mum and psychologist Sarah Butt with her children William, 5, Amy, eight weeks, and Lily, 8, is calling for more awareness about food allergy and its impact on families. Photo: Lachlan Bence

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Greater awareness and early detection of non-IgE food allergies could help save parent anxiety.

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An undiagnosed food allergy in her baby boy made mother-of-three Sarah Butt question her parenting ability.

A constantly crying, unsettled, vomiting baby, sleep deprivation and comments from doctors that it might be her anxiety causing the problem didn't help - and her relationship with her baby, older daughter and husband suffered.

"When my first child Lily was born, to be honest I felt like mother nature herself. She was one of those children who did everything she was meant to; she fed, slept and it was an amazing experience.

"Then I had William and from day dot he cried and cried and we couldn't settle him so much so that no one really wanted to hold him. Even my mum, who worked for 25 years in child care, had never seen a child so unsettled.

"We went day by day trying to do things and I constantly questioned whether it was me doing something wrong."

These mums talk about things like excluding themselves socially, the shame of going down the street with a baby you can't settle who is constantly crying, and people who look at you like you're a terrible mum. It makes you really question yourself and you can see how that experience can really impact on mental health. - Sarah Butt

William would projectile vomit, arch his back in pain, feeding was a constant battle and he had diarrhoea. Ms Butt took him to various doctors and to hospital, but they thought he had gastro.

"I had been turned away by a couple of GPs, told there was nothing wrong, that he needed to feed and we both needed to sleep. One even thought it was about anxiety ... they felt it was me," she said.

In desperation she posted on Facebook and a nurse friend stepped in and suggested a GP who was well-versed in food allergies, who referred her to a pediatrician who finally diagnosed William with a non-IgE dairy allergy.

"The allergy he has doesn't come up with blood and skin prick testing ... so it's hard to diagnose and often misdiagnosed," she said.

Ms Butt, from Ballarat, said the experience scared her out of having more children, but she fell pregnant last year with Amy, now eight weeks old.

When she started showing similar symptoms to William, she too was diagnosed with with a non-IgE dairy allergy, and was also found to be allergic to soy.

It makes you really question yourself and you can see how that experience can really impact on mental health. - Sarah Butt

While pregnant with Amy, Ms Butt, a psychologist at BHS, was completing her thesis on family experiences of children with non-IgE allergies.

Every family had similar experiences to her and seven of the eight mothers were health professionals who at times took extreme lengths to get meaningful advice - including refusing to leave the emergency department until reviewed by a consultant.

"I have worked in mental health for a really long time and remember hearing parents mention these things. It has a significant impact on people's quality of life, particularly young families.

"These mums talk about things like excluding themselves socially, the shame of going down the street with a baby you can't settle who is constantly crying, and people who look at you like you're a terrible mum," she said.

"It makes you really question yourself and you can see how that experience can really impact on mental health."

Ms Butt said her findings reflected a need to increase awareness of non-IgE allergies particularly among GPs, maternal and child health nurses and other health workers.

"There are so many mums out there who don't have the experience or education I have. I'm so lucky to have that behind me but many mums out there have this going on with kids and have no idea."

Ms Butt decided to tell her family's story as part of 2019 Food Allergy Week.

"There's been a lot of emphasis on IgE allergies and anaphylaxis, which is life threatening if children have those. They can die if they don't receive the correct treatment, but non-IgE allergies are more chronic and gastrointestinal. Children can't die from them but they can show signs of failure to thrive it can impact on their development."

FACTS ON FOOD-RELATED ALLERGIES

There are two types of food allergies.

The more common and most serious are IgE allergies which occur when the immune system overreacts to an allergen by producing antibodies called Immunoglobulin E (IgE). These antibodies travel to cells that release chemicals, triggering an allergic reaction that usually causes symptoms in the nose, lungs, throat or skin.

Non-IgE allergies are caused by a reaction in other components of the immune system apart from IgE antibodies. The reactions do not appear immediately after exposure, and usually relate to the gastrointestinal tract such as vomiting, bloating and diarrhoea.

Food allergies affect about one in 10 infants and two in 100 adults in Australia.

There are more than 170 foods known to have triggered severe allergic reactions. The most common triggers, causing 90 percent of allergic reactions in Australians are egg, cow's milk, peanut, tree nuts (such as cashew and almond), sesame, soy, wheat, fish and shellfish.

AWARENESS PLEA ON ALLERGY DANGERS

A quarter of people with food allergies have experienced an allergic reaction because their allergy is not taken seriously by the person preparing their food.

The frightening figure has emerged from a survey of people living with allergies by Allergy and Anaphylaxis Australia. The survey of 290 of the group's members highlighted a lack of understanding in the community about allergies, with most believing that people confuse allergies with lifestyle choices such as being vegan or disliking certain foods.

The research highlighted that people living with food allergy want the community to be better educated about food allergy, with restaurants and cafes at the top of the list, followed by schools, preschools and day care centres, airlines and health care facilities.

Allergy and Anaphylaxis Australia chief Maria Said urgent action was needed to improve knowledge of food allergies and help keep allergy sufferers safe.

"Anyone at any age can develop a food allergy. We need to remove the stigma from this condition, to ultimately help reduce risk, prevent life-threatening emergencies and save lives. Food allergy is not a lifestyle choice," she said.

"Death from anaphylaxis in Australia is on the rise. This is alarming as almost all fatalities as a result of food allergy are preventable.

"While it is up to the individual with food allergy to always read food labels and to communicate their allergy clearly in an effort to avoid the allergen, the community needs to have a basic allergy understanding to help keep those at risk safe.

More than half of people with a suspected food allergy face waiting at least three months to see an allergy specialist, putting them at risk of a potentially-dangerous reaction.

"The lack of allergy awareness in Australia combined with incredibly long wait periods to see an allergy specialist means people with suspected allergy are often left to fend for themselves; they feel anxious about what they can eat."

The Courier

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