Profile of an Allergy Parent: Sarah Gray (ausEE Inc.)

Sarah Gray is the mom to 2 young girls—her eldest daughter, Bella, has multiple food allergies and lives with a condition called Eosinophilic Esophagitis (EoE). Bella is allergic to milk (dairy), eggs, fish and chicken, and avoids soy and peanuts (previously also corn and wheat) due to being suspected triggers of her EoE.

AllergyBites: Can you describe the first time you realized Bella had a food allergy?

Sarah Gray: As a first time Mum to my beautiful baby Bella, I never suspected a thing. In 2003, when Bella was just 4 months old, a child health nurse check-up revealed she was not gaining weight so we visited our doctor and she was diagnosed as “failure to thrive.” We tried a dairy-based baby formula to complement my breastfeeding—but she immediately broke out in a rash. A long journey followed that led to her being diagnosed with the rare allergic disease eosinophilic esophagitis (EoE) in 2005, after which she was prescribed an elemental formula (a hypoallergenic infant formula with an amino acid base). The following year, Bella had her first severe allergic reaction, so we had to come to terms with the fact that she was also at risk of anaphylaxis and began carrying an EpiPen

AB: How is EoE diagnosed?

SG: That rash was just the start of our journey, but at the time, more focus was put on why she was failing to thrive. Several specialists and many tests later, they suspected she might have Celiac disease so she was referred to a gastroenterologist for an endoscopy at 18 months old. The endoscopy and biopsy revealed that it was not Celiac disease, but EoE. It was only after she was diagnosed with EoE that she was referred to an allergist for skin prick testing.

AB: Do food allergies and EoE typically go hand in hand? Is management of these conditions (e.g., food avoidance) essentially the same thing, or are there any notable differences?

SG: EoE is an allergic disease but it is not the same as IgE mediated food allergies. Bella just happens to have both, which is not uncommon. People with EoE often have other allergic diseases, and in Bella’s case, she also lives with eczema, asthma and rhinitis.

In EoE, it is not uncommon for allergy tests to be negative (meaning that a food can be consumed with no obvious reaction to it), but over a period of days to weeks, the eosinophils triggered by the food causes the inflammation to the esophagus. This was the case for Bella with wheat, corn, soy and peanut.

We’ve experienced lots of food trials to try to find her EoE triggers, and as we’ve been on this road for several years, we also introduce them back to see if the medication she is currently on is working. It’s a very complicated and long process to find your EoE triggers as they can also be environmental.

The main goal was to have Bella’s symptoms reduced as she was living daily with stomach pains, reflux, trouble swallowing, and consequently, food avoidance. We were only able to add corn back into her diet 18 months ago, and wheat in the last 9 months. She will be having an endoscopy this year to confirm that wheat is not triggering her EoE (which appears to be currently well controlled with diet and medication—but this can only be confirmed by endoscopy and biopsy).

Her IgE food allergies are treated separately, and they are identified by positive skin prick test results and subsequent allergic reactions. They too have changed over the years, as she only developed her chicken allergy at age 10. It is milk, egg, fish and chicken that she needs to fully avoid (and be wary of cross contamination). These foods are the reason why she needs to carry an EpiPen.

AB: Has Bella ever experienced an anaphylactic reaction? If yes, what happened?

SG: At age 3, she had her first severe allergic reaction after touching traces of egg on the kitchen bench that I had just wiped down. At around age 7, she had another severe (airborne) reaction, this time to the smell of cooking fish I had prepared at home for the rest of the family. (Until that point, we did not know she had a severe fish allergy.) Her most recent reaction was in December 2016—this was her first anaphylactic reaction during which her EpiPen was administered. She had accidentally eaten the wrong gingerbread I had baked (it contained milk). She was at her Nana’s house, and I was in the city with her sister watching The Nutcracker ballet. It was extremely hard not being there for her.

AB: After the diagnosis, what did your grieving process look like? Do you feel that you’re in the “acceptance” phase now?

SG: To be honest, I was initially in denial as she was diagnosed when I was heavily pregnant with my second daughter, Olivia. I thought she might outgrow EoE as so little information was available then. Once I realized that this wasn’t going to happen, I threw myself into finding out anything and everything I could about EoE and sharing it with others to help their journey. I shed many a tear those first few years, crying myself to sleep most nights, just feeling so helpless. I’m lucky I had my husband Jason by my side and a supportive family—my Mum and Dad have always been a fantastic help.

AB: What are your biggest challenges as the mom of a food-allergic kid?

SG: In our family, the biggest challenge has been (and still is) managing the mental health impact it has had on Bella particularly. But it affects everyone in the family and I’m really aware of the impact it has also had on Olivia—I always try to make special time for her. We enjoy visiting cafes together and eating whatever we want as that isn’t something we’ve been able to do much of with Bella. Bella and I also enjoy special time together… we both love shopping!

AB: How has your child dealt with their food allergies?

SG: Bella has always been very sensible about managing her food allergies and accepts her food restrictions. Having experienced allergic reactions from when she was young, she does have a fair bit of fear around eating so the advantage of that is she would never touch other people’s food. (But the disadvantages of the fear are very much an issue too.) Now that she’s a teenager, she is finally remembering to take her medications herself each day (took 13 years of me reminding her!), and she’s usually pretty good with keeping her EpiPen on her (but I do still have to check she doesn’t forget it).

AB: How often did you eat out before the food allergy diagnosis? How often have you eaten out since?

SG: Bella was diagnosed at a very young age, so it’s just always been part of our life. Her food restrictions were a lot greater when she was younger (due to her EoE not being as controlled as it is now), so we always packed her own food or her elemental formula everywhere we went. From age 7 to age 11, most of her nutrition was through a feeding tube in her stomach so her diet was very limited. We mostly still pack her own food even now that we have managed to introduce some food back into her diet and her feeding tube has been removed.

AB: Where are your go-to SAFE eating spots in Australia?

SG: Bella has always enjoyed eating McDonald’s fries. In recent years, we have explored more options, and she loves Grill’d chips. Earlier this month, we went to a vegan market and she got to eat her very first donut! I also run a Facebook page called Australian Allergy Friendly Finds, where I share allergy-friendly products, foods, restaurants or recipes that have made living with food allergies a little easier for us… and I hope might, in turn, help others.

AB: Can you tell me why McDonald’s makes you feel safe?

SG: The staff wear fresh gloves when asked to as we always declare Bella’s allergies when placing the order. They also are consistent wherever we are in Australia. And McDonald’s has a detailed list of ingredients and allergens for all their menu items on their website. Unlike McDonald’s in the US, the fries in Australia do not contain milk and wheat.

AB: What are some fun facts about your food-allergic kiddo?

SG: Bella was a very passionate cheerleader, having competed for 4 years in the sport. This year, she has decided to have a break as the pressure has become too much for her health. She is focusing all her energy on her school work and on her new Pomeranian puppy, called Princess.

AB: Tell me about ausEE Inc.

SG: In 2009, after a few years of feeling isolated and frustrated by the lack of information and support available for people living with eosinophilic oesophagitis in Australia, I founded ausEE Inc., a charity for eosinophilic disorders. I’m very dedicated to my volunteer work for the charity and also have a part time job, so life is pretty full on! At ausEE Inc., we provide support and information to anyone diagnosed with or caring for someone with an Eosinophilic Gastrointestinal Disorder (EGID), including Eosinophilic oEsophagitis (EoE). We are committed to raising public awareness and supporting the medical community for further research into eosinophilic disorders in Australia. If you’d like to support a great cause, or find out more about what we are doing for people with EGID in Australia and the research we have funded so far, please visit our website.

Sarah at AGW Conference

AB: And what’s the goal of the Top 8 Challenge?

SG: Each year during Australia’s National EOS Awareness Week, on August 8th, ausEE Inc. hosts Top 8 Challenge Day to raise funds for research into eosinophilic disorders. For one meal, or for the whole day, we ask people to refrain from eating any of the top 8 common allergenic foods (milk, egg, wheat, soy, peanut, tree nuts, shellfish and fish) and gain an insight into the life of someone living with an eosinophilic disorder and multiple food allergies. This initiative helps to spread awareness and raise vital funds for our cause. In 2017, we raised over $10,000 for our Medical Research Fund from both the Top 8 Challenge and member fundraising for National EOS Awareness Week.

AB: Final question – Why did you decide to team up with AllergyBites?

SG: I heard about AllergyBites from a friend in the allergy community and immediately thought: “What a fantastic idea!” I wanted to be included so that we can reach out to a wider audience who may not have heard about us or know that we have published 3 books for children with EoE.

(Psst! Buy 1 children’s book, get 1 free with your AllergyBites discount card.)