That’s what 13-year old Cate McNulty felt when, four months ago, she was diagnosed with Celiac disease, an autoimmune condition in which the body cannot tolerate gluten. The disease causes bloating and other unpleasant symptoms such as poor-quality sleep, constipation or even diarrhoea and vomiting.
If Cate has gluten, she explains, “I feel terrible for two days, and spend time backtracking to figure out what I ate that made me sick.”
Though Celiac disease is treatable, it can bring on a host of symptoms, including digestive issues – like Cate’s – and nutritional deficiencies, such as the malabsorption of iron, vitamin B12, zinc and other nutrients. The disease affects about 1 out of every 100 people.
And, there has been a substantial increase in the prevalence of Celiac disease over the last 50 years – with more people being diagnosed in the last 10 years, likely due to more attention given to gluten-aggravated symptoms, say experts interviewed for this story. Celiac disease is usually detected by blood tests and confirmed by small intestine biopsies. Other testing may include genetic risk testing to see if the person is predisposed to the condition.
A different diagnosis, with similar symptoms to Celiac disease, is gluten intolerance, or Non-Celiac Gluten Sensitivity (NCGS). “If the work-up for Celiac disease is negative for an individual with symptoms associated with gluten intolerance, they may be diagnosed with NCGS,” explains Dr. Brian Schwender, who is a Senior Consultant for Gastroenterology & Hepatology at Tucker Medical.
What is Gluten, Exactly?
Gluten is a type of protein found in grains including wheat, barley, spelt and rye. It’s found in most cookies, biscuits, cakes, pastries, crackers and breads, including pizza dough and noodles. With Celiac disease or Non-Celiac Gluten Sensitivity (NCGS), eating gluten triggers an immune response in the body, causing inflammation and damage to the small intestine.
Read more tips in our gallery below!
(Bonus: Check out our great roundups of places to shop for gluten-free goods and restaurants that cater to gluten-free customers. Also, read this smart advice from an expat mum who’s been there, done that when it comes to raising her daughter with Celiac disease.)
In a time where many people get information about possible medical conditions from their friends or by searching online, doctors like Dr. Brian – who also serves as Medical Advisor to the Singapore Celiac & Gluten Intolerance Support Group – say it’s essential to get tested for gluten intolerance by a professional healthcare provider.
And, he cautions people not to go on a gluten-free diet until they’re tested because it can affect the validity of the tests. “If you suspect that you or your child may have Celiac disease, please get evaluated medically first,” he says. “The only treatment for Celiac disease is to be on a strict gluten-free diet.”
It is especially important for children to be professionally diagnosed as early as possible, because the symptoms can affect development. “If a child has Celiac disease, and is not diagnosed and continues to ingest gluten during critical growth stages, he or she may experience growth delay,” says Dr. Brian. “Children can also have malabsorption symptoms resulting in certain vitamin and mineral deficiencies, which can lead to a number of conditions such as anemia, brittle bones, growth delay or delayed onset of menses in girls.”
For Cate, she started showing signs of anemia before her eventual Celiac disease diagnosis. Her mum, Yvonne, shares: “Cate just didn’t bounce back physically from stress and had difficulty getting quality sleep. Her irritated digestive process was taxing on Cate’s body.”
In Cate’s own words about this difficult time: “I was just very tired, always.”
But, after waiting so long to find out what was wrong – Cate wasn’t diagnosed until early 2019 – she says it wasn’t fear she felt, but relief. “I finally got a diagnosis,” says Cate, who was immediately put on a strict gluten-free diet.
Only by doing this, Dr. Brian notes, can the healing process of a child’s intestines start – though it may take months to years before the intestines completely heal themselves. (This also assumes the child is on a life-long gluten-free diet.)
“This major diet change will be the biggest challenge for a child and his or her parents, as they will always have to be vigilant about what they eat and how their food is handled and prepared,” he says. “Even the slightest amount of gluten, such as a tiny breadcrumb, can be enough to make someone with Celiac disease have a severe intestinal reaction.” (Read some coping advice from another mother of a GF child on here.)
As soon as Cate was diagnosed, her entire family switched to gluten-free eating – something that is recommended for those with either Celiac disease or NCGS.
“We threw out or replaced everything that had gluten in it within a week of the diagnosis,” shares Yvonne, who explains this lowered the risk of cross-contamination and helped Cate not feel like she is missing out. They also picked up dozens of cookbooks including Gluten-Free Baking, by Phil Vickery, and their go-to reference, The Coeliac Society of Australia Ingredient List (note: The spelling of “coeliac” is Australian, just like the McNulty family). These days, RedMart and Marks & Spencer are some of their favourite shopping spots. (See here for great GF grocers and bakers in SG.)
One unexpected bright side? “There are so many foods that are naturally gluten-free that we already eat!” enthuses Yvonne. “We have not needed to give up ice cream or chips.”
However, if you do not have Celiac disease or NCGS, think twice before you or your family go gluten-free to “be healthier” or whatever health benefits you perceive. “There is no evidence that gluten-free food is beneficial for people who do not have Celiac disease,” confirms Dr. Andrea Rajnakova, a Consultant Gastroenterologist at Andrea’s Digestive, Colon, Liver and Gallbladder Clinic.
Like most medical situations that challenge or change one’s lifestyle, the transition isn’t usually easy, and education and community can be important. It’s why Karen Horan started the Singapore Celiac & Gluten Intolerance Support Group (see next slide), after moving to Singapore in 2011 and missing the group support she had back in America.
Her daughter had trouble with constipation from a very young age and was diagnosed with Celiac disease in 2006, at the age of 3-and-a-half. Her whole family made the move to gluten-free living years ago, and her daughter is now 16.
Originally, Karen’s group met through AWA Singapore, which provided support by offering up meeting space and free promotion. It has since moved on to meeting at gluten-free cafes around Singapore. With an active Facebook group since 2013, there is a new website, GlutenFree.sg, which features a restaurant directory, and relevant medical and gluten-free related information. “I believe it is extremely important for people to be part of a community that understands their struggles. In addition to receiving help from others who have similar experiences, it is healing to be able to give help to others who need support,” says Karen, who explains that – for families like her own – eating gluten-free is more than just a passing food fad.
“For the majority of people in our support group, a gluten-free diet is a medical necessity rather than a reference,” she says. “Living gluten-free is not optional. You can’t just take a break for the weekend, if you wish to travel or attend a social event. The gluten-free diet goes where ever you go, and requires attention to detail and advance planning at every meal.”
That being said, she credits the gluten-free trend for the increasing demand for GF products and services. “There is a wider variety of imported products and more restaurants are including gluten-free menu options,” she says. (Click here for tasty gluten-free eateries on the island.)
As for Cate, she’s even found fun ways to manage her disease, such as getting into gluten-free baking. “You can bake everything – you just have to replace certain flours with gluten-free versions,” she says.
And, despite her young age, she has a surprisingly mature outlook on her condition, and wants to send this message to other kids who are dealing with Celiac disease or gluten intolerance: “The first few weeks suck, because you watch other kids eat things that you can’t. But, it will get better. It will just take time.”
The Singapore Celiac & Gluten Intolerance Support Group meets each month for free coffee mornings. These gatherings are a great opportunity to connect, face to face, with people who understand what it is like to live gluten-free. Check the site’s “Support Group” tab for meeting dates.
By Andrea McKenna Brankin, The Finder Kids Vol. 27 / Images: 123RF.com, respective shops and businesses, GlutenFree.SG
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