A 20-year-old student in Los Angeles has revealed she is unable to indulge in the city’s kale-ridden food menu — because of an immune condition.
Jenna Gestetner, 20, was diagnosed with Mast Cell Activation Syndrome (MCAS) in March 2021 after months of stomach cramps, bloating and nausea after eating.
She claims she is now restricted to just glucose water and eight foods: Turkey, fish, zucchini, cucumber, green beans, olive oil, salt, and limes.
Ms Gestetner says she is ‘disappointed’ and ‘upset’ that she can’t go to restaurants with friends — but the good news is grocery shopping takes just three minutes.
Jenna Gestetner, 20, a student in Los Angeles, can only eat eight foods because she suffers from the immune condition Mast Cell Activation Syndrome (MCAS)
She has had multiple allergic reactions over the years, including intense stomach cramps and nausea. She is pictured above in hospital undergoing tests which later confirmed the disease
MCAS is triggered by mast cells in the body, a type of white blood cell that is found throughout the body, including in the skin, lungs, intestines, and near blood vessels.
Patients with the condition see their cells misfire and start to attack innocuous substances that are mistaken for toxins.
Symptoms of the condition include hives, swelling, low blood pressure, difficulty breathing, and severe diarrhea after being exposed to an allergen.
Treatment initially focuses on antihistamines and aspirin to calm the immediate symptoms of an allergy.
But doctors will then work with patients to establish what is causing the allergic reaction and what they can and can’t consume.
The cause for the condition is unknown, but doctors say it is not likely to be related to any other disease or any clear cause.
Ms Gestetner says she needs to eat six meals a day because of her restrictive diet to ensure she gets enough nutrients
She is pictured above undergoing testing to establish what substances she is and is not allergic to
Ms Gestetner said she began suffering warning signs of MCAS when she was a child.
But the condition was only diagnosed in March 2021 after urine and blood tests.
She said: ‘I was always the kid that had issues and it always sounded like an excuse. Eventually, I just stopped telling people that anything was wrong.
‘My parents knew about my struggles, but they didn’t know all the details — when they found out that I got diagnosed, it shocked them.
She added: ‘I am very fortunate that my family supports me and helps me get the support I need.’
Before the diagnosis, she had tried consuming multiple different types of food but suffered reactions to them.
Asked about life now, she said it was a ‘mixed experience’.
Because of the diet, she must eat six times a day to ensure she gets enough nutrients.
She is also unable to try anything new at present, or visit restaurants with friends.
Ms Gestetener admitted that she keeps a cabinet full of snacks such as candy, popcorn, chips, sauces, and seasoning in her apartment, that she rolls out for friends when they come over.
She said: ‘Over the years, I have become way more used to the way I have to eat.
‘Food is social so I often feel left out when I am not able to eat with my friends but I have found my own ways of being included, whether that is bringing my own food or eating before I go out.’
Ms Gestetner is now aiming to stabilize her mast cells with medication so that she can start to enjoy more foods.
She is a full-time student at the University of Southern California, studying Arts, Technology and the Business of Innovation.
Explaining why she opened up about her condition, she said: ‘Diet is only one part of health and health is subjective.
‘I want to be able to make other people feel validated. There is so much online about being healthy, but what is good for one person isn’t always good for another.
‘Having a chronic illness doesn’t always mean you have a medical device or life-threatening allergic reactions; people have invisible illnesses that you wouldn’t know about from an outside perspective.
‘Those who have these challenges can still live a normal life – there are just extra things they have to consider when traveling or even leaving the house.
‘It’s about living your life to the fullest within the parameters of your own health. I’m just trying to find out what healthy means for me.’
Scientists initially believed MCAS was a rare condition, but with growing awareness more and more people are being diagnosed with the disease.
Estimates from a Canadian healthcare service suggest about 14 to 17 percent of people may have the condition.
What is Mast Cell Activation Disorder (MCAS)?
Mast cell activation disorder is the umbrella term for a spectrum of diseases caused by the inappropriate activation or build-up of mast cells in the body’s tissues.
Mast cells are produced in the bone marrow and are an important part of the immune system and help fight infection.
When mast cells detect an allergen, they release histamine and other chemicals into the bloodstream. Histamine makes the blood vessels expand and the surrounding skin itchy and swollen.
Mast cells sometimes mistake harmless substances, such as pollen, for infectious germs, and trigger the process of swelling.
This can cause the skin to become red, swollen and itchy, and it can also create a build-up of mucus in the airways, which become narrower.
People with the condition have an increased risk of having a severe and life-threatening allergic reaction called anaphylaxis.
Symptoms include itchy skin or a raised, red skin rash, feeling light-headed or faint and swelling of the throat, mouth and tongue which can lead to breathing difficulties.
Source: NHS Choices