Australian Support Network for Eosinophilic oEsophagitis and related disorders
ausEE Inc. was founded in November 2009 and has become the first Australian support network for people living with an eosinophilic gastrointestinal disorder.
Eosinophilic gastrointestinal disorders (EGID) occur when eosinophils, a type of white blood cell, are found in above normal amounts in various parts of the body, they are often associated with allergies. Symptoms vary greatly, but can include: nausea, vomiting, diarrhoea, abdominal or chest pain, reflux that does not respond to usual treatment, difficulty swallowing, failure to thrive, poor appetite and food impaction. Eosinophilic oEsophagitis is the most common EGID, the current estimated prevalence is 1–4 cases per 10,000 individuals. Endoscopy and biopsy is the ONLY way to confirm the diagnosis of an EGID.
ausEE Inc. is a registered Australian charity dedicated to providing support and information to anyone diagnosed with or caring for someone with an Eosinophilic Gastrointestinal Disorder (EGID) including Eosinophilic oEsophagitis (EE or EoE), Eosinophilic Gastritis, Eosinophilic Enteritis, Eosinophilic Colitis and Eosinophilic Gastroenteritis.
They are committed to raising public awareness and supporting the medical community for further research into eosinophilic (pronounced ee-oh-sin-oh-fill-ick) disorders in Australia.
The non-profit organisation‘s website www.ausee.org provides information on the disorders, links to medical articles and other relevant resources including communication forums for members who join the site (free membership).
All medical information on their site has been reviewed for accuracy by their Medical Advisory Board.
For more information, please visit ausEE Inc. website www.ausee.org
Imagine being allergic to food, not just one food but most or all food.
Mum forms support network for daughter’s rare disorder
A Sunshine Coast mother, Sarah Gray, has formed the first Australian support network for people living with Eosinophilic oEsophagitis (EE or EoE), (pronounced ee-oh-sin-ohfill-ick) the disorder her 6 year old daughter Bella suffers from.
EE is characterized by elevated levels of eosinophils in the oesophagus (the tube that connects the mouth to the stomach). Eosinophils are a type of white blood cell which can grow in an uncontrolled manner and attack the gastrointestinal system. Symptoms can be (but are not limited to) nausea, vom-iting, diarrhoea, abdominal pain, reflux, trouble sleeping, failure to thrive, difficulty swallowing and food impactions.
EE is just one of a group of diseases called Eosinophilic Gastrointestinal Disorders (EGID) that are of-ten associated with allergies. The current estimated prevalence of EE is 1–4 cases per 10,000 individu-als. These disorders can only be diagnosed by an endoscopy and biopsy; a diagnosis cannot be made on symptoms alone. The most common medication used is steroids, along with dietary management, to control inflammation and suppress the eosinophils; there is NO CURE. To determine the treatment plan these children may undergo several endoscopies a year.
For most of her life, Bella has been relying on a special elemental formula to get the nutrition she needs as she is allergic to most foods. As this formula is unpleasant in taste, many children with EE require a feeding tube to meet their daily nutritional requirements; fortunately Bella is able to tolerate this formula orally. She is also able to eat certain foods such as rice and potato, but only in small amounts. Due to her significant allergies when she eats other foods, her body reacts, causing nausea, abdominal pain, reflux, eczema and hives. Some children with EE are solely dependent on the elemental formula and are unable to tolerate any foods at all.
From when Bella was first diagnosed over 5 years ago, we have struggled to find other parents dealing with the same issues and have often felt isolated. There are support organisations operating in the US, Canada and UK but until now there has been no support for Australian‘s living with these disorders‖ said Sarah.
The aim of ausEE is to provide support and information to anyone diagnosed with or caring for some-one with an Eosinophilic Gastrointestinal Disorder (EGID) including Eosinophilic oEsophagitis (EE or EoE), Eosinophilic Gastritis, Eosinophilic Enteritis, Eosinophilic Colitis and Eosinophilic Gastroenteritis.
We are also dedicated to raising public awareness for Eosinophilic disorders in Australia as there is so little information available about the disease that patients often suffer for a number of years before a diagnosis is made. The non-profit organisation‘s website www.ausee.org provides information on the disorders, links to medical articles and other relevant resources including communication forums for members who join the site (free membership).
The diagnosis of an eosinophilic disorder is life-altering, in addition to the serious physical signs and symptoms; it is a challenge to live in a society that focuses on food. Bella Gray knows only too well how difficult it can be.
By providing support, information and awareness, we hope ausEE can make a difference to the lives of kids and adults living with these disorders‖ said Sarah.
For more information, please visit ausEE website www.ausee.org http://www.allergy.org.au/content/view/168/1/
EGID – Eosinophilic Gastrointestinal Disorder (EGID)
Eosinophilic gastrointestinal disorders (EGID) occur when eosinophils (pronounced ee-oh-sin-oh-fills), a type of white blood cell, are found in above-normal amounts within the gastrointestinal tract.
Eosinophils are important in your body‘s defence against parasitic infections (e.g. worms). However, they are also involved in allergy. In some individuals, eosinophils accumulate in the gut in response to food and/or airborne allergens and can cause inflammation and tissue damage.
The abnormal amounts of eosinophils can occur in the:
- oesophagus (eosinophilic oesophagitis)
- stomach (eosinophilic gastritis)
- small intestine (eosinophilic enteritis)
- large intestine (eosinophilic colitis)
- throughout the gastronintestinal tract (eosinophilic gastroenteritis).
Eosinophilic Oesophagitis (EE)
Eosinophilic oEsophagitis (EE) is the most common type of Eosinophilic Gastronintestinal Disorder (EGID).
The cause of EE in some individuals appears to be due to an allergy to food(s) and/or aero-allergens. Males are more commonly affected than females. The current estimated prevalence of EE is 1-4 cases per 10,000 individuals and rising. People with EE commonly have other allergic diseases such as asthma or eczema. EE affects people of all ages, gender and ethnic backgrounds.
- Feeding difficulty (such as needing to puree foods, being slow to chew foods, avoidance of certain foods)
- Poor appetite
- Dysphagia (difficulty in swallowing foods and/or requiring a drink after eating)
- Nausea, persistent vomiting and retching
- Reflux that does not respond to anti-acid medication
- Abdominal or chest pain
- Failure to thrive (failure to put on or loss of weight)
- Food impaction
- Difficulty sleeping.
In other types of eosinophilic gastrointestinal disorders, symptoms depend on which part of the gut is affected (e.g. diarrhoea and bloody stools if the small or large intestine is involved).
In addition to (not in lieu of) the above, some people also experience pain in their lower limbs (legs, ankles & feet), ear infections, asthma, croup, migraines, mysterious fevers, and more frequent colds when they are reacting to a food. Behavioural changes have also been reported in some children.
- Endoscopy and biopsy is the ONLY way to confirm the diagnosis of EGID and EE. It cannot be diagnosed based upon symptoms alone.
- Endoscopy – a gastroenterologist performs an endoscopy by using an endoscope (tube with a light & camera at the end) to look at the GI tract and take small biopsies, usually from the upper oesophagus, lower oesophagus, stomach and dueodenum. The oesophagus may look visually normal, but when the tissue is examined under a microscope, an abnormal accumulation of eosinophils can be detected resulting in diagnosis. It is also possible that the endoscopist could visu-ally detect rings or furrowing, thickened folds and white plagues.
- Biopsy – the biopsies taken are later reviewed by a pathologist. A high number of eosinophils (counted per high power field under the microscope) suggest the diagnosis of EGID. Eosinophils can normally be found in small numbers in all areas of the GI tract except the oesophagus. GERD/GORD (acid reflux disease) is associated with low number of eosinophils in the oesopha-gus. With eosinophilic oesophagitis, the number of eosinophils seen is much higher and remains elevated despite treatment with acid reflux medication.
There is no cure for EGID and EE, but the goal of treatment is to eliminate the eosinophils in the effected area, thereby alleviating symptoms.
- An Elimination diet is one common treatment option. It is important to speak with a qualified Allergist/Gastroenterologist, and have a Dietitian experienced in food allergy before undertaking an elimination diet. The elimination diet is tailored to the individual. Some individuals may be able to identity specific food(s) that trigger symptoms, but others cannot. More than one food may be involved. Some doctors may suggest the patient remove the top 8 food allergens implicated in EE (milk, egg, soy, wheat, peanut, tree nut, shellfish and fish). Another option may be removing food(s) the patient has tested positive to via skin prick testing, specific food IgE testing and/or atopy patch testing.
- An Elemental diet consists of only a special medical food called an elemental formula, which contains amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. They provide all the nutrition a person needs if enough is taken. Some individuals need a feeding tube to ensure they are getting enough of the formula or to give the oesophagus a rest. The patient is placed on the formula alone for a number of weeks, and will then have a repeat endoscopy to see if there has been improvement. If the condition has improved, then foods are slowly introduced back into the diet and a repeat endoscopy is often performed to ensure ongoing control with food reintroduction.
- Medication can be used alone and/or along with dietary management. The most common medi-cation used is a corticosteroid spray used in asthma. However, the spray is not inhaled but swallowed, so that the oesophagus is coated with the medication. Acid reflux medications may also be used. The doctor will determine which, if any, medications are appropriate for each individual.
Parent‘s Story – Henry‘s Story
Henry was born (full term) on 19 September 2008. From day 2 he cried (or actually screamed) all day and all night. When I told the doctors in the hospital they would say “Babies Cry”. I knew babies cried, but I also knew that babies didn’t scream all the time unless something was bothering them.
Of course I got all the usual advice about wind and colic and tried every wind remedy known to man. When we got home it continued day and night of screaming. We went to the local midwife, children’s cottage, GP’s Paeds, and they all said it was behavioural. I researched all that I could and found that sometimes dairy can irritate them through the breast milk, so I stopped dairy and he stopped screaming during the day, but it continued through the night.
He would wake anywhere from 15 minutes to 1 hour and then it would take 15 minutes to 4 hours to get him to go back to sleep. His bowel movements would also eat through his bum causing blisters and bleeding. He would claw at his chest day and night and draw blood from scratching so much. It was the saddest thing as a parent to watch your child in this much agony and not be able to do anything about it. We then visited a second paed who put him on Losec. No change.
They thought we should go to Tresillian. We went to Tresillian who kept us for 9 days (usually you only go for 4). I had to listen to my child scream and scream for 4 days straight. I was on the verge of a nervous breakdown. It was so painful listening to him cry. After 4 days, Tresillian said I just needed to do anything to get him to go to sleep (he was only sleeping for an average of 6 hours per 24). We left and tried their techniques for 1 month which only made things worse (if that was possible). We went back to the paed in desperation as at this point (8 months) I was only getting 0 – 2 hours of sleep a night and he admitted us to the hospital and took Henry off breast milk and put him on Neocate. Henry didn’t want Neocate so he went on a hunger strike for 4 days and of course slept very well. The doctors thought that they discovered that it was my breast milk that was poisoning him. Once he started drinking the Neocate and eating, everything went back to normal and he was up every 15 minutes to 2 hours. I then begged for a sleep study which we got at a local Hospital. They recorded him waking 30 times an hour and that’s when doctors finally took notice.
Henry was diagnosed as having severe GERD and was on triple the dose of Losec plus Zantac. It helped slightly as now he slept for 2 -3 hours at a time. The Sleep Paed said that he should go to a gastro paed which we agreed. She was under the impression that we wouldn’t find anything if we did a scope, but luckily she did so anyways. A few days later they told us that Henry had been diagnosed with EE. He’s been MUCH better since the diagnosis, but it still a battle every day with him. We went off foods for three months and the EE had improved drastically (by the 3rd scope) but its still there. We are currently doing food trials, and he is tolerating 4 foods (pumpkin, pear, green beans and carrot). His main nutrition comes from an elemental formula which luckily he drinks enough of through his bottle. I’m hoping our story can help others so that they know they are not alone and have support! Together we can help find a cure!!!
Mercedez, Vice-President, ausEE Inc.
After an EGID diagnosis is confirmed, it is typically recommended for allergy testing to be carried out by an allergist or trained and experienced medical practitioner. Skin prick testing is the most common form of allergy testing.
Skin prick testing or scratch test is where a diluted extract of the food/allergen is placed on the skin of the forearm. This portion of the skin is then pricked/scratched with a needle and observed for swelling or redness. A positive scratch test indicates that the patient has the ÍgE ‘mediated response that is specific for the food/allergen being tested. The severity of the response is based on the size of the swelling.
Atopy patch testing looks at delayed “or non-IgE‘ mediated reactions. Small amounts of pure food are placed onto small discs which are then taped to the back. The patches are removed af-ter 48 hours and the results are read at 72 hours. Positive results include indurations or papules reactions.
RAST testing measures the presence of food-specific IgE antibodies in the blood of patients, blood is drawn and sent to a lab for testing to determine predictive values” for certain foods. RAST may not be as helpful for identifying foods that cause EGID reactions.
It is advised that the patient should not be taking antihistamines or oral steroids for 48 hours before undergoing skin prick or atopy patch testing.
In EGID patients it is not uncommon for allergy test results to be negative. This means 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 can cause inflammation to the esophagus. In these instances it is useful to keep a Food Diary to assist in identifying the offending food.
“A child who orally feeds puts on weight at twice the rate as a tube-fed child.”
Kids and adults who need elemental formula may have a difficult time drinking enough of it. To maintain proper nutrition, some require tube feeding to allow the formula to go directly into the stomach.
Tube feeding, also called enteral nutrition, is a way food can get into your body if you are unable to eat or unable to eat enough. Food in liquid form is given through a tube into the stomach or small intestine.
Tubes can be placed in different places along your gastrointestinal tract:
- A nasogastric tube is a tube that is put up the nose and down into the stomach.
- A gastrostomy, sometimes called a PEG, (percutaneous endoscopic gastrostomy) is placed in the stomach during a procedure. Some PEG‘s have a tube always hanging out, and some replacement PEGs are flat (profile, or buttons‘).
- A feeding jejunostomy is placed in the middle part of the small intestine, called the jejunum, during surgery.
This information has been sourced from Queensland Health; you can download more information from their resource Tube Feeding at Home – http://www.health.qld.gov.au/nutrition/resources/etf_tfah.pdf
Where to get assistance
General enquiries: firstname.lastname@example.org
Sarah Gray, President & Founder: email@example.com
Mercedez Hinchcliff, Vice-President: firstname.lastname@example.org
Postal address: ausEE Inc., PO Box 9303, Pacific Paradise Qld 4564
No fuss feeding and swallowing centre
PO Box 659
Toowong DC Qld 4066
Tube Fed Kids
A social networking site for families and friends of tube fed children (past or present). This site serves as a good tool to share information and stories, help with tube feeding issues and most of all help with tube weaning issues. The transition from Tube Feeding to oral consumption is a long road for most children and their families
Australian Breastfeeding Association
Information, support, discounted electric breast pump hire and a linked phone or email help line. ‘Breast feeding your premature infant’ booklet is available through their Mother’s Direct Shop.
Ph: 1800 MUM 2 MUM (1800 686 2 686) – 24hrs
Australian Lactation Consultants Association
National professional association for Australian International Board Certified Lactation Consultants.
Below is a link which will enable you to find a private lactation consultant near you.