Bella Gray literally can’t tolerate most foods – but the 17-year-old who was once so afraid of food that she had to receive nutrition through an intravenous tube has now found a way to live with her allergies and enjoy a full life .
Concerns first arose when Bella stopped growing four months after her birth in 2003.
A series of consultations with doctors and pediatricians initially did not explain why she did not gain weight.
At 18 months, after an endoscopy, Bella was diagnosed with eosinophilic esophagitis (EoE), an inflammatory condition of the esophagus.
The rare disease was life-altering, and every aspect of the Sunshine Coast youngster’s diet became suspicious.
Bella Gray was born with eosinophilic esophagtis (EOE) but has learned to cope with her challenging living conditions
When she was a young girl, Bella was fed through a tube, which was not easy
Her mother, Sarah Gray, said it was a relief when her daughter was diagnosed with EoE so they knew what they were dealing with, but dealing with the consequences was a major challenge.
“Because she is also allergic to eggs, fish, chicken and dairy, has asthma and has eczema, life is not easy for Bella,” she explained to Daily Mail Australia.
Some foods can cause chest pain and nausea, and there are also problems with Bella swallowing her food.
“Any episode of anaphylaxis is life-threatening, so we have to be vigilant every day.”
As Bella grew, so did her challenges.
She soon developed a fear of eating, which forced her to be tube fed as a young girl, which in turn made it difficult for her to stay in school.
“I felt different from the other kids and was a little bullied,” said Bella.
“ Seeing other kids eating lollipops and ice cream and knowing I couldn’t … I felt different, even though I wasn’t a fan of that food.
‘I found that quite difficult to deal with, everyone just wants to be a part of it … I had to focus on what I was eating every meal break.
“In the end it was all too much, I was always exhausted so we decided I would finish school early.”
Planning Bella’s current diet is a painstaking process. She now likes soup, as well as rice and pasta dishes with beans and lentils.
“I’m terrified of fruit,” she said.
‘It’s complicated because I also have ARFID (avoidant and restrictive food intake) due to trauma, so it gets frustrating at times, which is why I try to stay positive.
‘I’m also a proud vegan, so some of the foods people think I’m missing out on I wouldn’t want to eat anyway.’
Currently, there is no specific test that can indicate triggers for EoE, despite the increasing number of patients.
About one in 2,000 people is diagnosed with the disease – five times as many as one in 10,000 people when Bella was born.
Bella is also a proud vegan, with her favorite meals, soup as well as rice and pasta dishes
Queensland teen Bella developed a fear of eating at a young age and is ‘terrified of fruit’
Ms. Gray founded the nonprofit ausEE to provide support to the estimated 12,000 Australians currently living with EoE and also to raise awareness about the condition and other eosinophilic gastrointestinal disorders (EGIDs).
“We don’t have government support – I’ve been a volunteer running the charity for over a decade, but we’re not considered a priority area when it comes to funding,” she said.
Funding is needed to address important issues, including standards of care guidelines and diagnostic pathways. If left untreated, EoE can cause scarring, strictures, and strictures of the esophagus, putting people at risk for food impact (food gets stuck in the esophagus).
For people with this life-changing diagnosis, it is difficult for them to get the support they need as eligibility varies widely. There is a lack of knowledge of this complex condition and more support and understanding is crucial. ‘
What is Eosinophilic Esophagitis?
* Eosinophilic esophagitis (EOE) is a chronic, allergic, inflammatory disease of the esophagus (the tube that connects the mouth to the stomach)
* It occurs when a type of white blood cell called the eosinophil builds up in the esophagus
* The chronic disease can be managed through diet and / or medical treatment
* Prevalence is increasing by an estimated 1 in 2,000 affected people
* The Six Food Elimination Diet (SFED) is the most commonly used dietary treatment in patients with EoE. This diet typically tests the exclusion of milk, wheat, eggs, nuts, fish and soy
* Has the potential to significantly reduce psychological functioning, including increasing depression and anxiety