People of all ages and gender can be diagnosed with eosinophilic gastrointestinal disorders, no two diagnosis stories are the same, nor is their journey.
You are invited to Share Your Story to be included on this page.
Bella began to fail to thrive at 4 months old, before solids were introduced. She was breastfed for 13 months, with me removing milk from my diet when she was about 7 months as we knew from then that she couldn't tolerate dairy as she would get an immediate rash when we trialled formulas - including the hypo-allergenic peptijunior.
During this time we saw several doctors and paediatricians all with different opinions and no answers as to why she wasn't growing. Finally, at 18 months she was referred to a gastroenterologist for an endoscopy and she was diagnosed with eosinophilic oesophagitis - which we had never heard of! We were given a prescription for Neocate and it has been a huge learning curve ever since! Bella never showed obvious signs of reflux or pain, but we have worked out since that she just didn't know any other way of feeling, as she is vocal now when she gets her tummy aches and "bubbles" in her throat.
Bella is also anaphylaxis to egg, fish and dairy and suffers from asthma and eczema. She has several other food allergies including wheat, corn and soy, which are all avoided in her elimination diet. Her main source of nutrition is from Neocate Advance which she drinks orally from her favourite sippy cup - the hard bit is getting her to drink enough of it! Bella is now 6 years old and she has a 4 year old sister, Olivia who does not have EoE and who has outgrown the food allergies she had as a baby. Olivia now only suffers from intolerance to rice.
I have founded this support network after many years of feeling isolated and frustrated by the lack of information and support available in Australia for these often unheard of disorders. We aim to change that by reaching out to the medical community and other families living with these disorders, because together, we are not alone...
Sarah, President & Founder, ausEE Inc. ; November 2009
In December 2010 the decision was made for Bella to have a gastrostomy feeding tube inserted to assist her to gain much needed weight. You can follow this journey by reading Bella’s TT Blog. Her tube was removed in March 2015 and she went back to drinking her elemental formula.
You can purchase 'Meet Arabella'; a children's book based on Bella's diagnosis with EoE from our Gift Shop.
Looking back, I can see that my son's pain started the day after he was born. Henry was born full-term in 2008 and was our first child. He screamed all day and all night. Constantly.
Only being a few days old, the consensus was that he had colic, was hungry and had wind and was all normal for a newborn. I honestly looked at this child screaming and thought this can't be normal, but what did I know being a first time mother?
After we took Henry home, the screaming continued. I was assured by many that he was healthy and growing so that nothing could be wrong with him. It persevered. Day in and day out of eardrum piercing screams. I was so tired - he wouldn't sleep - he only wanted to eat and then cry.
6 weeks into his life, I felt like a shattered woman. Completely sleep deprived and without any answers as to why my beautiful little angel was so unhappy. Still, at this point, no one was really worried as he continued to grow...especially since he breastfed every 2 hours day and night. I was showed settling techniques from wrapping to rocking to letting him cry. Nothing seemed right and nothing worked. And by the way, no, not every baby likes to be wrapped...
3 months into his life our paediatrician put him on an reflux medicine as he had a suspicion that Henry had "silent reflux". This did nothing. We increased the dose. Nothing. We tried a new reflux medicine. Nothing. Finally we decided to take dairy out of my diet and Henry started to have some peace during the day, but the screaming at night continued with a vengeance. At this point I was lucky to get 2 hours of sleep a night...and it was only going to get worse. But our paed could see that this was in some way related to food. So we trialled many things with little success, but in the end its what led us down the right path.
At 6 months, we introduced solids. We were told by so many that maybe he just needed to eat. New symptoms arose, Henry had begun to claw at his chest and his poo began to eat through his skin causing burns and blood on his bottom. We frequently had to dress his wounds on his chest from his claw marks. Seeing our child like this was absolutely heartbreaking, we just didn't know what to do, except not give up.
In order to make sure that it was not behavioural, we went to sleep training school and if possible it just made things worse for Henry and the entire family.
8 months into his life and everything was at its breaking point. Our paed could see that I was getting close to no longer being able to look after my child due to severe sleep deprivation and admitted us to hospital for a week. The intention was for Henry to be weaned off breast milk, and for the nurses to care for Henry at night while I slept. Because the formula tastes awful, Henry stopped eating for 4 days and was in danger of having a feeding tube inserted. During these 4 days, Henry slept better and we thought we had figured out that it was something in my milk.
After we got home, and he started eating and drinking, the screaming and scratching continued and a once hopeful couple that we were, felt completely despaired. We continued to try reflux medicines and see all sorts of doctors from homeopaths to specialists etc., tried everything under the sun and still nothing. Still screaming all night.
I think the true turning point for us (as all parents have this moment of light) was when we completed a sleep study. The hospital recorded Henry waking an average of 30 times an hour. We immediately were referred to a gastroenterologist paediatrician who ordered the endoscope and finally at one year of age, Henry was diagnosed with eosinophilic oEsophagitis. This was the end of a long journey, but the beginning of a much longer one.
This was a completely new path for us. Not one without pain, but one with some answers and a lot of hope that someday someone will find an answer to this dreadful disease and our children who suffer will no longer feel sick, simply from eating.
Mercedez, Vice-President, ausEE Inc. ; November 2009
Visit our Gift Shop to purchase a copy of 'Being Henry' a children's book about living with EoE.
Henry has made a lot of progress since he was first diagnosed! Read Henry's updated story, shared in 2019 here.
Hey everyone! My name is Jemima and I was diagnosed with EoE in about 2013. To me, having EoE doesn't really effect my life, apart from not participating in food activities at school.
I am best friends with Bella, but we live in different states (I live in Melbourne and Bella lives in Queensland) - so we always FaceTime! We are seeing each other at the end of this year, so we are both really excited :) I also text one of my best friends Bridget, who also has EoE - even though we haven't met in real life yet, but I really hope we do soon! I love playing soccer - as goalie, and I also love craft and making things with my awesome mum, and cooking allergy friendly foods for my friends and family with her too. I also love music, and my dad and I hope to start a home recording studio! I just turned 13, and this year I started high school. I have two cats and a dog (my cats names are Tiger and Yoyo and my dogs name is Pippi) who are adorable!
EoE is a pain, but it doesn't stop you from doing the things you love :) So if you were just diagnosed or you are stressed about having EoE - don't worry! You can always talk to people like me or Bella if you are aged 10 to 20 years old through an awesome website called LiveWire (www.livewire.org.au). I am on it :) See you later!
Jemima (age 13) ; June 2017
Hi to all at ausEE. I just wanted to share a good-news story with you. I know this condition brings with it a lot of pain and heartache to families and, especially when first diagnosed, it can sometimes be really hard to be positive about the future. I know it certainly was for me. ausEE is such a wonderful organisation and for many people is where we gain valuable knowledge, tips, advice, and support. It has been a while since I've been a part of that community but I haven't forgotten how much help it was. I wanted to share our story in the hope that it will help others see that there can be positive outcomes, even when you sometimes feel like there is no end in sight.
Toby was first diagnosed with EGE and GORD at 8 weeks of age via endoscopy. He was placed on an elemental formula and we were sent on our way. As I'm sure most of you understand, it was difficult to find our feet and get ourselves in touch with a team of professionals to help us deal with this new diagnosis but eventually we established a great network to support us. Our biggest and best source of help came from our paediatric allergist/immunologist and a wonderful dietitian. In those early days Toby could not even tolerate elemental formula at full strength. We had to experiment with different brands and various levels of dilution until we found something tolerable. As he got older it became time to try solids. Filled with hope we started trialling small amounts of various hypoallergenic options. Much to our despair he could not tolerate a single food. Pear would make him scream in pain and make his bowels bleed. So would rice. So would everything. Still, we persisted with the agonising food trials. A day or two on a new food... Fail... 4 - 6 weeks off to allow the gut to heal. Repeat.
Throughout this process our allergist had us trialling various drugs until Toby was put on one that seemed to work for him. Slowly we started to notice he was tolerating a few foods. Then more. We were ecstatic! By the time Toby was two years old he was formula-free and able enjoy a good diet, albeit dairy, corn, wheat, fish, and nut free. Over the last 18 months we have pushed ahead with introducing new things, re-trialling previous un-safe foods and slowly weaning off his medication. I am happy to report that now, at 3 1/2 years of age, Toby is completely medication-free and happily eats whatever he likes with the exception of being cow's milk protein intolerant. He is happy and healthy, making friends, annoying his big sister, is cheeky to everyone he meets, gives the best cuddles ever, and is generally just loving life. The road to get here wasn't easy but it was soooo worth it! I know many people can't share such a great story and I don't want to take anything away from what they are going through. However, we were continually told there is not enough evidence to know whether a child can outgrow this condition or not. I just want to show the other side and say - yes, it is possible!
*Name has been changed.
Written by *Toby's Mother ; August 2016
Aunty Sal is fabulous. Aunty Sal is my sister in law. She lives next door which we setup as shortish term plan while her son was a baby....almost four years down the track I feel like I would cry for a month if she decided to move away. We love living next door to her and watching her son grow and sharing our day to day lives.
What makes her extra special is the way she cares for our younger son Sammy. He has EOE, EG, GORD, asthma, eczema, hiatus hernia, allergies including anaphylaxis. Sammy has a speech delay and is very easily fatigued. He has seriously disturbed sleep every night. We call him John West because he rejects so many foods.. We also call him our little fruitarian.
We don't let many people look after our Sammy. His medications, illness and allergies make it too stressful for us.... and to be honest there aren't many people we trust or that many volunteers. But Sal looks after him regularly - part of every weekend and two afternoons each week. Often when he is sick she takes him on her own days off so we can work. She has done cooking classes in allergy free cooking and has made her house free of his multiple allergens so he can be always be safe there. She's done epipen training and is so diligent about his care and safety.
And of course, Sammy loves his Aunty Sal. They have been close since he was born. Even before we lived so close they had a special connection. She is a fun Aunty who makes gardens, paints, draws, reads, takes him to the theatre and is interested in EVERY bit of his news.
Sammy says Aunty Sal is his best friend, a lot of fun and a little bit naughty.
Kylie ; March 2014
A few weeks ago, my oesophagus 'shut' for 22 hours. You don't realize just how much saliva your body makes until you have to spit it into a cup because you cannot swallow it. There's more to it than just the antisocial side of it, though. After a while of spitting into a cup, my body starts to heave, like it wants to reject whatever is in my stomach. It is impossible to vomit with a closed up oesophagus but the violent contractions of the stomach are extremely similar to being in labour, and they just won't stop.
Muscle relaxants, steroids, anti-nausea drugs, ... I don't know what else they put into my vein, but nothing worked. Eventually they put Valium into me and I passed out. My heart beat became irregular and BP dropped so much, they put me in ICU. When I woke up, I still couldn't swallow. A couple of hours later, it opened all by itself, and I drank a litre of water. I felt dehydrated.
This has happened to me twice to this extent. It has been going on for about 15 years, but only stayed shut for up to 3 hours in the past. Barium swallows, gastroscopies and biopsies and now I have a name for it, Eosinophilic Oesophagitis ...apparently!
I'm 45 years old and I don't go anywhere because I'm too scared to eat. I'm on a liquid diet until I see a gastroenterologist (have to wait over 2 months for an appointment). I have lost 6 kg so far...
Lola ; March 2014
I am a mum hoping that my story might help prevent other parents going through the heartache that we have over the last few years. My son is called Alasdair and he is 3 years old. He can ONLY tolerate a special baby formula called Nutramigen AA and nothing else. No meats, fruits or vegetables, not even tap water. This is due to a recently diagnosed, rare disease, called Eosinophilic Esophagitis.
Alasdair is the most amazing, happy, playful toddler you could hope to meet, you would have no idea he had anything wrong with him if you met him! So long as he sticks to having the special formula as his only diet he lives a completely normal and happy life :-)
Rachel ; November 2013
Our son Arya was diagnosed with Eosinophilic Esophagitis (EOE) at 11months of age.
What is EOE? When you eat most foods, eosinophils in the stomach begin to attack the esophagus and create scarring which is so painful that the child is not able to eat at all.
In order to grow, kids need a special formula called Neocate that provides all the nutrients their body needs. The only problem is that it tastes revolting and large volumes need to be consumed in order to gain the calories. Therefore, kids with EOE usually live with a naso gastric tube (like Arya) or a g-tube that is inserted through the stomach (could be the future for Arya).
The only way to diagnose/monitor the condition is to have regular endoscopies.
This is a relatively new condition and an increasing number of children are being diagnosed every day, especially in developed countries.
Meeta ; August 2013
From the 2nd day Vincent was born I knew something was wrong. Being our second child I knew a baby should not scream constantly and refuse to drink as well as barely sleep & gain any weight.
We were getting anywhere from a 15-30 mins of a catnap then poor Vincent would wake screaming again. This went on for months, we went to 4 different paediatricians and tried countless medications and Different things and Nothing worked. So after 3 months we were admitted to hospital, little did I know our stay would be for a month and a half.
We all struggled to feed Vincent and had many specialists & dietitian’s come and go and have their say. Vincent's weight continued to drop and at one point was just under the 3rd % line dropping off the graph all together. The hospital were quick to insert a nasogastric tube and start feeding him, but at 3 months old all he could tolerate was around 30mls, so forcing 90mls into Vincent every 3 hours wasn't working. We ended up on continuous feeds for 22 hours a day and that started to work.
Doctors did many blood tests, urine tests, barium swallow tests, X-rays and scans and couldn't find anything wrong with him. So we were then referred to our Gastroenterologist. The Gastro was quick to do a gastroscopy and a flexible sigmoidoscopy and took biopsies from all around the anus, stomach and oesophagus. I had a phone call 3 days later with our results. I had never heard of the word Eosinophilic before but I was quick to learn everything about it and learnt very quickly how to say to it. Vincent was diagnosed with the Eosinophilic disease in his small intestine, stomach and rectum. All of these places were being viciously attacked and our poor little boy was always screaming in pain. With this disease the white blood cells - the eosinophils think that anything entering the body is a foreign object and it’s quick to attack it, causing allergic reactions or intolerances. In some cases like Vincent , they can even react to environments and certain smells or chemicals etc . Vincent was also diagnosed with allergic rhinitis, protein enteropathy, and eczema.
In the short 5 months of Vincent's life he has been in and out of hospital for other sicknesses too, he catches viruses very easily, he has had 2 lots of bronchiolitis, clostridium difficle - stomach infection and many colds. I'm very proud of our little man with how strong he has been. He still endures a lot of pain and is still reacting with his formula but we have treatments we are trying to help reduce his symptoms. We're hoping something will work soon or someone one day will come up with a cure. Vincent has just had surgery to get his bard button (feeding tube directly into his stomach) so we can ditch the nasogastric tube and he can try and be a normal 5 month old. Our little Vincent is our little angel. Just wish we could take away all his pain.
Jesika ; December 2012
I never had this problem nor knew where it came from. I used to choke on food every now and then but not know why. I used to think maybe I just didn’t chew properly until one night I choked really bad and had to be hospitalised, after waking up I seemed fine but had a fear of eating. I lost about 15kgs and the doctors said it’s enough and sent me to a specialist. I waited and waited and the doctor finally came, he checked me and said to me I have Eosinophilic Oesophagitis, he gave me medicated and it fixed it.
One year later it came back, tried the medication again but it did not work, went back to the specialist and they put me to sleep, put a camera down my throat and tried to fix it, when I woke up they told me they have to stretch my throat to fix the problem, so I agreed and said yes to proceed, mind you I have had my throat stretched 3 times now and they won’t stretch it anymore. I don’t know what else to do neither do they; but I’m trying my best to keep strong.
Mirwais ; September 2012
Hi my name is Maree, I have an 18yr old daughter Tara, she has had a long journey with EE. At 1 month of age she was diagnosed with chronic reflux and failure to thrive, and treated with reflux medications, then after many hospital admissions and weight loss, this went on until Tara was nearly 6mths, until we changed hospitals, she had a nissen fundoplication, to stop her vomiting and hopefully put on some weight, she also had several pyloroplastys, which combined seemed to stop the vomiting, she still had chronic reflux, but not as much vomiting, she had many endoscopies, biopsies, medical procedures over the following months which finally showed EE.
She had many allergy tests, every one you could think of and still no outcomes on what she was allergic to, we spent many months in hospital test after tests, she had many food elimination diets, living on pears for 6 months introducing her to new foods each week, she was nasal tube fed for 12 months only living on a formula called Neocate advance, her symptoms went away for a few months and then came back again with a high reading of EE.
Over the years she still had so much reflux medications, biopsies and hospital visits, she missed many years from school. At the age of 16 she was again admitted back into hospital with an 8 month trial of Neocate advance, she had a feeding tube put into her stomach, to make life easier for her, with many tests she was diagnosed with a nutcracker oesophagitis, a cork screwing oesophagitis, the specialists still couldn’t find anything that she was allergic to, then at 17 she was transferred to John Hunter adult hospital, and we were told Tara’s EE is an immune EE. We then moved to the Gold Coast, and have new specialists in Brisbane, we have been told that Tara’s condition is very rare, that he doesn’t know of anyone in Australia with this condition and now her immune system is causing her chronic EE, (not a food allergy) with the nutcracker and cork screwing oesophagitis is a follow on from the chronic EE.
Tara is currently on chemo medications, high doses of morphine and phenergan and many anti acids/reflux medications, she is still on 16 hours of Neocate advance feeds, she is 49 kilos, and such a beautiful young lady, she has had such a long struggle with EE. We have had years of Tara crying with pain and sleepless nights, and now we have being told that Tara’s bone marrow is affected, she has more operations to have and still a long journey with immune EE, medications and hospital visits.
Maree ; March 2011
Erin is number 8 child in a family of 9 children. She is a beautiful happy little girl who has already dealt with many other medical problems. She had kidney surgery at 4 days of age and at 12 months of age; she was diagnosed with HPE at age 6 months, CAH at 3yrs and had eye surgery a few yrs ago for a turn in her eye.
Erin is 11 years old and was diagnosed with EE in Dec 2009. We travelled a long road to finally get to the EE diagnosis. Erin has been on losec since she was very young and had severe eczema as a baby and young child. She started developing severe attacks of stomach cramps and vomiting which got progressively worse over the last few years. Each attack brought with it the possibility of hospitalisation because of the CAH and Erin was hospitalised on average 3 times a year. We have zofran on hand at all times to try and stop vomiting but sometimes it just doesn’t work.
Our paediatrician decided it was time to get to the bottom of the recurrent attacks and Erin underwent every imaginable scan and the only thing that showed up was a slightly enlarged bile duct. We were sent to a gastro specialist who was horrified that she was on losec and took her off it immediately. He booked a scope for two months time and when he came out he showed us a photo of how damaged Erin’s oesophagus was and put Erin back on losec and repeated the scope again in three months. Same result. He sent us to have a wire placed that measures the acid but it could not be placed as Erin’s nose anatomy is not normal. So the losec was doubled to 40mg a day and Erin was rescoped in three months. Same result and the gastro said he was now sure it was EE and when the biopsy results came back high eosinophils, and a higher number of eosinophils at the top of the oesophagus compared to the bottom, EE was confirmed. The gastro wanted to start Erin immediately on the cortisone that sticks to the oesophagus but I refused as it would affect the balance of her hormones as she takes cortisone for the CAH. I insisted we follow the elimination diet and the gastro booked us to see an immunologist. Needless to say we never saw that immunologist I got sick of waiting and saw a private one. By this time Erin had been on the elimination diet for 5 months and the immunologist asked the gastro to perform another scope. That was only just over a week ago and Erin’s scope was clear. I can’t tell you how elated I was to hear the good news instead of the "no change" I had got used to hearing. We got the biopsy results yesterday and the mucosa (I think) has damaged cells but there a zero eosinophils present in any of the biopsy results.
The diet has been hard and I made mistakes in the first month or so, but I got better as time went on. We also decided to take all chemicals out of Erin’s diet. A family member started me researching the chemicals in our diets a while ago; I originally read a lot about the chemicals in our diets because I have an auto immune disease, ankylosing spondylitis. This family member’s son is autistic and the naturopath took her son off all chemicals. We took Erin off fluoride, artificial colours and flavours and artificial sweeteners. We used a natural shampoo and conditioner and soap. I will never know if doing any of this made a difference but I’m sure it didn’t do any harm. We now start a new diet. We are reintroducing one food at a time. We just tried soy, starting two days ago and for the first time in nearly 6 months we had to give Erin zofran to try to stop her vomiting and she was doubled over with stomach cramps and had a headache. In case it was a coincidence I will give her a break and try soy again. Erin has been so good and accepted the changes, she complains now occasionally but enjoys not being sick all the time.
Kerry ; July 2010
Reading Henry's story is such a brutal reminder of the difficult days of undiagnosed EE. My son too screamed from birth - one of the nurses put an unhappy face on his crib just to rub it in!! (All the other babies had smiley ones!!) Tom failed to thrive, and I saw so many doctors in those early weeks, who all reassured me that babies took time to settle in...I was just an overly anxious new mum... at 5 weeks, in desperation after having such difficult times I took him to the ER department at the local hospital and he was operated on for Pyloric Stenosis... this was supposed to fix the problem, but it didn't. He went on to scream with discomfort at feeds - he would be so hungry, but would arch his back and scream in pain, pulling on and off the breast. I had constant Mastitis from never having the breast fully drained.
Yet again, the doctors felt this was more my problem than his and so after months of no sleep and screaming we were told to go to the sleep clinic to "learn " how to control cry my baby. I think I lasted there 2 nights then bailed out as I couldn't bear to let them continue with their program on a baby who to me was obviously severely unwell. Months turned to years of poor health and no sleep.
My son’s reactions became more aggressive and frightening as he grew and began solids with no one really able to tell us what was going on. His immunity was incredibly low and so he seemed to be forever fighting bad health. I had been very selective in the foods I introduced from the start as my mum has a history of bowel problems, and salicylates are a big trigger to her. Those early years, Tom survived mostly on a diet of paw paw, avocado and rice! He was on losec and other inhibitors for years with no success and would have such severe reactions from welts and hives all over his body to breathing difficulty. By the time he was 5 he had been on every type of ambulance travel possible- even being air sea rescued from a holiday house back to the Mater Hospital to stabilize his airways due to severe, unexpected reactions. I have a diary of all the hospitalizations during those years and wonder how my husband and I survived the stress. At one stage, while we were back in hospital for a prolonged stay, (it had become like a second home) my visiting sister-in-law (an intensive care nurse) told me that they had put Tom and I in a room that had a video recorder taping our every move! He was so ill they thought I had to be doing something to him!!So again I felt that no one understood the condition Tom had! The big turn around for Tom was finding a fantastic homeopath. Because Tom was so allergic, often the antibiotics they would give him for infections would cause a secondary reaction, making him even sicker. So we found the natural remedies were much easier for him to tolerate and have helped build his immunity up. He still suffers from stomach pain, and tummy "dumping" from time to time, but has become stronger and so doesn't have as many violent reactions to foods or environment.
He is also on Flixotide - taken as a swallowed steroid and this seems to keep the oesophagus from closing over totally. This started about 3 years ago when he was finally given a diagnosis of EE. In the past it had been called reflux / celiac/ brittle asthmatic ... So to be given a name that encompasses ALL of his symptoms was such a relief!! We had his first choking incident last year which was very confronting and terrifying. He was given an injection of steroids to relax the oesophagus and that allowed the food to pass eventually. I could write pages and pages of the dramas and terrifying times of Tom!! Bu I do sincerely believe that kids who do it tougher than most in those early years, grow into the most spectacular young people... Tom will be 15 years old in a few months and every day I count my blessings that he has grown into such a beautiful young man. He has the most amazing empathy and understanding nature. And makes more happy noise these days!!
Annie ; January 2010
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Page last modified: 22 October, 2017