When you're dealing with over 100 food allergies and can only safely eat 14 different foods, a simple dinner out transforms from a social pleasure into a high-stakes negotiation.
That's precisely the situation facing Melbourne woman Jenna Gestetner, whose Instagram video of ordering at a restaurant has sparked fierce debate across social media—and highlighted just how little many of us understand about severe medical conditions that affect dining.
MCAS is estimated to effect up to 5-10 per cent of the population! Yet despite affecting potentially hundreds of thousands of Australians, conditions like Mast Cell Activation Syndrome remain poorly understood by the general public.
In this article
The medical reality behind the restrictions
Jenna lives with a combination of serious medical conditions that severely restrict what she can safely consume. People with a mast cell activation syndrome (MCAS) experience repeated episodes of symptoms due to release of mast cell mediators. Symptoms are variable and can include hives, wheeze, gastrointestinal upset, low blood pressure, and anaphylaxis.
Her second condition, Postural Orthostatic Tachycardia Syndrome (POTS), is equally challenging.
Postural orthostatic tachycardia syndrome (POTS) is a health condition that causes dizziness and a fast heartbeat when you stand up, as well as a range of other symptoms. These conditions often occur together—one study of patients with EDS and POTS found 66 per cent had symptoms consistent with MCAS.
'Can I get the Dover Sole but with no mushroom and no lemon sauce? I just want it completely plain. No salt, no pepper, the only oil that could be used would be olive oil, but it has to be 100 per cent olive oil'
What makes these conditions particularly challenging is the diagnostic journey. Diagnosing MCAS can be challenging. Although international diagnostic guidelines exist, access to the specialised testing needed is limited in Australia. On average people see six doctors before diagnosis.
Understanding MCAS and POTS in Australia
MCAS treatment primarily focuses on management of symptoms caused by mast cell activation. Part of MCAS treatment involves identifying and avoiding various, individual triggers, such as dietary, environmental and stress-related factors.
For support, Australians can contact The Australasian Mastocytosis Society (TAMS) or the Australian POTS Foundation for specialist referrals and community support.
The social media storm
Jenna's dining experience, shared on Instagram, divided viewers into two distinct camps. Critics argued she should 'just eat at home' rather than burden restaurant staff with complex requests.
'Go home and cook your own meal. Being entirely too difficult,' wrote one commenter, while another worried about 'the stress from both waiters and chefs bending over backwards to figure out how to strip the dish down so it doesn't hurt her.'
Source: @jennaxhealth / Instagram.
However, many others defended her right to dine out. Restaurant workers chimed in to say they're accustomed to handling specific dietary requirements, and that Jenna deserved a 'good dining experience' despite her medical conditions. The most constructive suggestion that emerged was calling ahead to discuss requirements with kitchen staff.
What Australian restaurants are required to do
The reality is that Australian food service businesses do have legal obligations regarding allergies. All retail outlets in NSW are required to have a trained 'Food Safety Supervisor' on site; so at least one staff member is trained to address allergen questions.
A restaurant has a legal responsibility to ensure your safety, provided you've warned staff of your allergy. However, this doesn't mean every venue can safely accommodate every dietary restriction.
Australian dining rights and responsibilities
- Allergic diners should inform restaurant staff about their allergies, both for their own safety and for legal purposes
- Ideally parties with allergy suffers should call restaurants ahead to book and discuss the allergy. This will also prevent disappointment in case the restaurant can't accommodate the allergy
- Food allergy is very serious, causing illness and even death. Even very small amounts of an allergen in food can trigger a reaction
Practical strategies for safer dining
Australian allergy experts have developed comprehensive guidelines for dining out safely. Always tell food service staff about your food allergy when you order food or drinks. Use an Allergy & Anaphylaxis Australia Chef Card to communicate with serving and cooking staff about your allergy.
Source: @jennaxhealth / Instagram.
The choice of restaurant matters significantly. With their standardised food preparation processes and consistent menus across locations, chain restaurants and takeaways may be safer choices. The simpler the dish, the less chance of cross contamination and hidden food allergens. For example, ordering steak, steamed potato and vegetables with no dressing, sauce or gravy is a safer bet.
There are some venues to avoid entirely. Buffet and all-you-can-eat restaurants have a high risk of cross contamination.
Example Scenario
- Planning a safe meal out in Australia
- Before leaving home: Check the restaurant's website menu and call to discuss your allergies. Eat a small snack in case service is delayed. Pack your EpiPen and emergency medication.
- At the restaurant: Present your Allergy & Anaphylaxis Australia Chef Card to wait staff. Ask them to speak directly with kitchen staff. Choose simple dishes with fewer ingredients. If in doubt, don't eat it—if you feel tingling, swelling or burning it is safer not to eat the food. The touch test does not guarantee the food is safe, but it's an extra safety step you can take.
When things go wrong
Despite best efforts, reactions can still occur. If you do have an allergic reaction after disclosing your food allergy to restaurant staff, it is important to report your reaction so the restaurant processes can be investigated. This could help prevent another person from having anaphylaxis in the future. Once recovered, report the reaction to the health department.
Finding balance in the debate
The harsh social media response to Jenna's situation reflects a broader misunderstanding about invisible disabilities. While it's true that managing severe allergies requires extra care and communication, people with medical conditions shouldn't be relegated to eating only at home.
The solution lies in better communication and preparation from both sides. Restaurants benefit from staff training and clear allergy protocols, while diners with severe restrictions can make the process smoother by calling ahead and bringing detailed information about their needs.
Your food allergy should not stop you from enjoying yourself when eating out with friends and family. It takes some planning and communication, but it's worth the effort.
Did you know?
Did you know?
Allergic reactions and fatalities have occurred from people consuming food purchased in food service businesses, and from undeclared allergens in packaged foods. In Australia most recalls are due to undeclared allergens in packaged foods. This highlights why restaurant allergen management is not just good customer service—it's a serious safety issue.
Support networks and resources
Australians dealing with severe food allergies aren't alone. The Australasian Mastocytosis Society provides a network of education and support for patients living with mast cell activation disorders including systemic mastocytosis, cutaneous mastocytosis and mast cell activation syndrome (MCAS) and their carers.
For POTS specifically, visit the Australian POTS Foundation for more information, support and a list of health professionals with experience in treating POTS.
What This Means For You
The key message from medical experts is clear: these conditions are real, they're more common than many realise, and they require understanding from both the community and food service providers. Rather than debate whether people like Jenna should eat out at all, perhaps we should focus on how to make dining safer and more accessible for everyone.
What are your thoughts on dining out with severe allergies? Have you or someone you know faced similar challenges when eating out? Share your experiences and tips in the comments below—your insights could help others navigate these tricky waters.
Primary Source
https://www.skynews.com.au/lifestyl...s/news-story/083e87d50f6df6fc571f778997e81558
Mast Cell Activation Syndrome (MCAS) - PERTH ALLERGY CLINIC
Cited text: MCAS is estimated to effect up to 5-10 per cent of the population!
Excerpt: MCAS is estimated to effect up to 5-10 per cent of the population!
https://perthallergyclinic.com.au/mast-cell-activation-syndrome-mcas/
Mastocytosis—Australasian Society of Clinical Immunology and Allergy (ASCIA)
Cited text: People with a mast cell activation syndrome (MCAS) experience repeated episodes of symptoms due to release of mast cell mediators. Symptoms are variab...
Excerpt: People with a mast cell activation syndrome (MCAS) experience repeated episodes of symptoms due to release of mast cell mediators.
https://www.allergy.org.au/patients/allergy-testing/mastocytosis
Postural orthostatic tachycardia syndrome (POTS) - medical condition | healthdirect
Cited text: Postural orthostatic tachycardia syndrome (POTS) is a health condition that causes dizziness and a fast heartbeat when you stand up, as well as a rang...
Excerpt: Postural orthostatic tachycardia syndrome (POTS) is a health condition that causes dizziness and a fast heartbeat when you stand up, as well as a range of other symptoms.
https://www.healthdirect.gov.au/postural-orthostatic-tachycardia-syndrome-pots
Mast Cell Activation Syndrome
Cited text: One study of patients with EDS and POTS found 66 per cent had symptoms consistent with MCAS
Excerpt: one study of patients with EDS and POTS found 66 per cent had symptoms consistent with MCAS
https://www.ehlersdanlosaus.com/mast-cell
Mast Cell Activation Syndrome (MCAS) - Australian POTS Foundation » Australian POTS Foundation
Cited text: Diagnosing MCAS can be challenging. Although international diagnostic guidelines exist, access to the specialised testing needed is limited in Austral...
Excerpt: Diagnosing MCAS can be challenging. Although international diagnostic guidelines exist, access to the specialised testing needed is limited in Australia.
https://potsfoundation.org.au/mast-cell-activation-syndrome/
Home Page—Australian POTS Foundation » Australian POTS Foundation
Cited text: On average people see Six doctors before diagnosis.
Excerpt: On average people see six doctors before diagnosis.
https://potsfoundation.org.au/
Treatment—The Australasian Mastocytosis Society
Cited text: MCAS treatment primarily focuses on management of symptoms caused by mast cell activation (MCA) 22. Part of MCAS treatment involves identifying and av...
Excerpt: MCAS treatment primarily focuses on management of symptoms caused by mast cell activation.
https://mastocytosis.org.au/mast-cells-explained/treatment/
Webinar: Eating out with food allergies—Allergy & Anaphylaxis Australia
Cited text: All retail outlets in NSW are required to have a trained ‘Food Safety Supervisor’ on site; so at least one staff member is trained to address allergen...
Excerpt: All retail outlets in NSW are required to have a trained 'Food Safety Supervisor' on site; so at least one staff member is trained to address allergen questions.
https://allergyfacts.org.au/webinar/webinar-eating-out-with-food-allergies/
Food Allergies and Eating Out: What are your Rights? | Shine Lawyers
Cited text: A restaurant has a legal responsibility to ensure your safety, provided you’ve warned staff of your allergy.
Excerpt: A restaurant has a legal responsibility to ensure your safety, provided you've warned staff of your allergy.
https://www.shine.com.au/resources/...allergies-and-eating-out-what-are-your-rights
Food Allergies and Eating Out: What are your Rights? | Shine Lawyers
Cited text: Allergic diners should inform restaurant staff about their allergies, both for their own safety and for legal purposes.
Excerpt: Allergic diners should inform restaurant staff about their allergies, both for their own safety and for legal purposes
https://www.shine.com.au/resources/...allergies-and-eating-out-what-are-your-rights
Food Allergies and Eating Out: What are your Rights? | Shine Lawyers
Cited text: Ideally parties with allergy suffers should call restaurants ahead to book and discuss the allergy. This will also prevent disappointment in case the ...
Excerpt: Ideally parties with allergy suffers should call restaurants ahead to book and discuss the allergy.
https://www.shine.com.au/resources/...allergies-and-eating-out-what-are-your-rights
Allergen information for food businesses | SA Health
Cited text: ... Food allergy is very serious, causing illness and even death.
Excerpt: Food allergy is very serious, causing illness and even death. Even very small amounts of an allergen in food can trigger a reaction
https://www.sahealth.sa.gov.au/wps/...sues/allergen+information+for+food+businesses
Allergen information for food businesses | SA Health
Cited text: Even very small amounts of an allergen in food can trigger a reaction.
Excerpt: Food allergy is very serious, causing illness and even death. Even very small amounts of an allergen in food can trigger a reaction
https://www.sahealth.sa.gov.au/wps/...sues/allergen+information+for+food+businesses
Eating out with food allergies—Food Allergy Aware
Cited text: Always tell food service staff about your food allergy when you order food or drinks.Use an Allergy & Anaphylaxis Australia Chef Card to communicate w...
Excerpt: Always tell food service staff about your food allergy when you order food or drinks.
https://foodallergyaware.org.au/everyone/eating-out
Eating Out with A Food Allergy—ALLERGY 250K
Cited text: With their standardised food preparation processes and consistent menus across locations, chain restaurants and takeaways may be safer choices.
Excerpt: With their standardised food preparation processes and consistent menus across locations, chain restaurants and takeaways may be safer choices.
https://allergy250kteens.org.au/eating-out-with-a-food-allergy/
Eating Out with A Food Allergy—ALLERGY 250K
Cited text: The simpler the dish, the less chance of cross contamination and hidden food allergens. For example, ordering steak, steamed potato and vegetables wit...
Excerpt: The simpler the dish, the less chance of cross contamination and hidden food allergens.
https://allergy250kteens.org.au/eating-out-with-a-food-allergy/
Eating Out with A Food Allergy—ALLERGY 250K
Cited text: All food allergies Buffet and all-you-can-eat restaurants have a high risk of cross contamination.
Excerpt: Buffet and all-you-can-eat restaurants have a high risk of cross contamination.
https://allergy250kteens.org.au/eating-out-with-a-food-allergy/
Eating out with a food allergy—Young Adults
Cited text: If you feel tingling, swelling or burning it is safer not to eat the food. The touch test does not guarantee the food is safe, but it’s an extra safet...
Excerpt: if you feel tingling, swelling or burning it is safer not to eat the food. The touch test does not guarantee the food is safe, but it's an extra safety step you can take
https://allergy250kya.org.au/eating-out-with-a-food-allergy/
Eating out with a food allergy—Young Adults
Cited text: If you do have an allergic reaction after disclosing your food allergy to restaurant staff, it is important to report your reaction so the restaurant ...
Excerpt: If you do have an allergic reaction after disclosing your food allergy to restaurant staff, it is important to report your reaction so the restaurant processes can be investigated.
https://allergy250kya.org.au/eating-out-with-a-food-allergy/
Eating out with a food allergy—Young Adults
Cited text: Your food allergy should not stop you from enjoying yourself when eating out with friends and family. It takes some planning and communication, but it...
Excerpt: Your food allergy should not stop you from enjoying yourself when eating out with friends and family.
https://allergy250kya.org.au/eating-out-with-a-food-allergy/
Allergen information for food businesses | SA Health
Cited text: Allergic reactions and fatalities have occurred from people consuming food purchased in food service businesses, and from undeclared allergens in pack...
Excerpt: Allergic reactions and fatalities have occurred from people consuming food purchased in food service businesses, and from undeclared allergens in packaged foods.
https://www.sahealth.sa.gov.au/wps/...sues/allergen+information+for+food+businesses
Home—The Australasian Mastocytosis Society
Cited text: We provide a network of education and support for patients living with mast cell activation disorders including systemic mastocytosis, cutaneous masto...
Excerpt: The Australasian Mastocytosis Society provides a network of education and support for patients living with mast cell activation disorders including systemic mastocytosis, cutaneous mastocytosis and mast cell activation syndrome (MCAS) and…
Postural orthostatic tachycardia syndrome (POTS) - medical condition | healthdirect
Cited text: People with POTS may have a reduced quality of life, experiencing: ... Visit the Australian POTS Foundation for more information, support and a list o...
Excerpt: visit the Australian POTS Foundation for more information, support and a list of health professionals with experience in treating POTS.
https://www.healthdirect.gov.au/postural-orthostatic-tachycardia-syndrome-pots
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