Come with me as I fly halfway across the globe to New Zealand.
In my quest to see what it is like to live around the world with celiac disease, I interviewed Sarah Albom from New Zealand. I found Sarah through an article I read on Coeliac New Zealand. She also made a documentary “Don’t Pass the Bread” about celiac disease for Coeliac New Zealand. It was very well done, and as I watch it, I once again realize that no matter where we live we are all affected by celiac in similar ways. No matter how we spell it or what we call it in our native language.
Sarah was diagnosed when she was 18 years old. “I went to my doctor with complaints of fatigue and dizziness. She found that my iron levels were low. I began taking iron supplements, but my fatigue persisted.” When she returned to her doctor, they tested her for coeliac disease. “I'm lucky she thought to test for it, as I knew almost nothing about it before she mentioned it to me during our appointment.”
Sarah has an aunt and cousin with celiac disease. She believes her mom may have it as well but she had to go on a gluten-free diet before she was tested for celiac. She believes that other older family members may have had it as well due to chronic stomach problems. However, it was less well known at that time and they were never tested.
What do you find to be the hardest part of living with Celiac?
As it is common for those with celiac, Sarah feels that the social impact of celiac disease is the most difficult. “After all, food is a vital part of social culture. I explore this concept in my documentary that I made two years ago.”
Sarah also gave a recent example of traveling to another city for a workshop. She had to navigate eating out with colleagues. She was trying to persuade them to eat at a restaurant that she researched ahead of time and thought would be safest for her. She did end up convincing her colleagues to eat there but like many of us felt embarrassed about having to advocate for herself.
Are there any positives that you feel came from your diagnosis?
“While the disease itself is frustrating to live with, I am very glad I got diagnosed. It meant that I was able to start healing my gut and feeling healthy again. I went to the doctor initially with fatigue issues, but it was only once I started eating gluten-free that I realised I had been feeling very sick for a long time.” Since most of us go years before we are properly diagnosed it is often hard to remember what it felt like to feel well.
Do you know anyone else with celiac?
“Aotearoa New Zealand has a large and welcoming community of people with coeliacs. I have been privileged to interact and work with other coeliacs through the country's national organisation, Coeliac New Zealand. There is also a very active Facebook community, which is great for non-medical opinions, venting, and suggestions about good restaurants.”
Eating out in New Zealand
How knowledgeable is the food industry in New Zealand regarding celiac disease?
“A mixture of gluten-free advocacy and the overall increasing numbers of people who eat gluten-free in Aotearoa New Zealand has led to far more understanding of coeliacs in the food industry, but it is still not perfect. Many workers in the food industry are still not informed about safely preparing food free from gluten.”
Are the menus clearly marked for allergens and gluten-free food?
“There are good restaurant options here, but coeliacs still should be careful when eating out in Aotearoa New Zealand. There are a small number of coeliac-safe restaurants throughout the country, particularly in our major cities. For example, some restaurants have chosen to go through the accreditation process from our national organisation, Coeliac New Zealand, and be trained in how to safely prepare food.” Similar to the United States there are many restaurants that specify what foods on the menu are gluten-free, vegetarian, or vegan but then essentially say to eat at your own risk. Sarah gets frustrated when she goes to a new restaurant that states they are gluten-free but when she gets there it’s clear that they don’t take celiac seriously and therefore can’t eat there.
It is Sarah's recommendation to eat at restaurants that have been accredited by Coeliac New Zealand. Similar to the United States it’s also good to ask the celiac community on social media. However, it’s important to make sure reviews are up to date and also ask questions at the restaurant.
Do restaurants usually have something you can eat safely?
“The average restaurant in Aotearoa New Zealand is not a safe place for coeliacs to eat. The coeliac community on Facebook usually discusses bringing spare food when you travel as a backup, such as protein bars or other snacks. When I go out with friends during the day, I normally just drink tea or coffee. I also research local restaurants that are safe and suggest that my friends and I eat at these locations. You can find gluten-free restaurants, you just have to research them in advance!”
What is the easiest/hardest about eating out?
“Eating out usually involves a decent amount of research. It's hard to just decide to go get an impromptu meal with friends. You need to know safe places to go. Even when I go to a restaurant I have previously eaten at, I always confirm with the waiter that the kitchen knows how to safely prepare coeliac food.” The loss of spontaneity is something I hear often from my followers. This is one of the hardest aspects of having celiac disease.
How common are Celiac/gluten-free dietary restrictions in New Zealand?
“Gluten-free food is becoming more common in Aotearoa New Zealand, partly because of diet trends and partly because of the increasing number of coeliac diagnoses and awareness of the disease. Approximately now 1 in 70 to 1 in 100 people here are diagnosed with coeliacs.”
Buying Gluten-Free food
Is it easy for you to find gluten-free options at the grocery store?
“The food industry in Aotearoa New Zealand is becoming much more aware of coeliacs and the importance of strict gluten-free diets. There is plenty of food at the store with coeliac-safe logos, which means that the food has been tested to have less than 3 parts per million of gluten. Most big stores also have 'allergen-free' aisles, which encompass gluten-free, dairy-free, nut-free, and organic options. However, from what I can tell, Aotearoa New Zealand has a much larger selection than some countries. I think we have a great range of options, but definitely could improve with our processed selection.”
*In the United States our gluten-free food must be less than 20 parts per million. New Zealand is much lower at 3 parts per million.
Are foods clearly marked gluten-free?
“Ingredients lists must mention in bolded writing if there are any major allergens, such as gluten, dairy, or nuts. It is worth noting that these lists are in a small font on the back. Some products may also have big stickers that say the food is gluten-free, but this requires the brand to pay to have their food tested for traces so not all companies do this. Many brands have chosen to start adding to their ingredients lists whether the product was made in a factory that also processes gluten, which allows coeliacs to decide if they want to take the cross-contamination risk.”
What would you say is your biggest struggle eating gluten-free in New Zealand?
"My biggest struggle with eating gluten-free in Aotearoa New Zealand is constantly checking ingredient labels. Brands do not need to give much, if any, warning for when they change their recipes, and sometimes I forget to check it.”
Is eating gluten-free more expensive in New Zealand?
“Gluten-free food is definitely more expensive in Aotearoa New Zealand. Eating naturally gluten-free can help with the budget, but anything that is explicitly gluten-free (pasta, flour, bread) can cost two to six times as much as its gluten counterpart.
Currently, the gluten-free flour I buy costs NZ$4.80, versus NZ$1.25 for the same quantity of generic brand gluten flour from the same store. Similarly, the loaf of gluten bread my former flatmate bought cost NZ$2.00, while gluten-free brands are more likely to cost at least NZ$8.00.
These foods also may not taste as good - most gluten-free pasta noodles become mushy, and I regularly see coeliacs lamenting about the poor state of our gluten-free bread.”
Sarah explains how difficult it can be for a student with celiac disease to try to afford gluten-free products.
Does the government help with the expense of gluten-free food?
“I believe that citizens can request ongoing financial aid to buy gluten-free groceries. However, the application process is extremely long and arduous, and not everyone is accepted. To gain financial aid, you must first buy all of the food that is more expensive and submit the receipt to show that your finances are impacted by your diet. Then, the government will cover the price difference between your gluten-free purchase and the average cost of the gluten-based counterpart. I have never tried to get this financial aid, as the initial application was too daunting for me.”
Do you have to worry about gluten in your over-the-counter or prescribed medication?
"There are some concerns about gluten in medication. For example, the government-approved brand for prescribed paracetamol (the most common pain relief medication) changes regularly and I need to ask the pharmacist and/or brand each time if it is made with gluten.”
Paracetamol is the same as Tylenol in the United States. Sarah explains that if she is unsure if it is gluten-free she can ask the pharmacist for assistance.
I'm so thankful that I was able to find Sarah through her work with Coeliac New Zealand and that she was willing to let me interview her. I hope to visit New Zealand in the future.