I am 36 years old and live in Darwin, Australia. I was diagnosed with Eosinophilic Oesophagitis (EoE) about 12 months ago after a long, frustrating journey trying to find out why I was so unwell. EoE is a chronic allergic/immune mediated inflammatory disorder of the oesophagus.
I attributed initial symptoms of chronic heart burn on pregnancy and coffee. More mild impactions I thought were caused from eating too fast. I experienced a whole range of symptoms, which in isolation, seemed minor. Ongoing exhaustion could almost be expected, given I was trying to balance work, university and life with young children. Daily diarrhoea was initially blamed on my stressful job. Ongoing anaemia (despite iron supplements and iron infusions) was blamed on my vegetarian diet. I repeatedly explained to doctors that I was following the plan set by a dietitian however felt that this was dismissed. The mouth sores I frequently developed were also blamed on my vegetarian diet.
I had daily diarrhoea for between 3 to 4 years. I had various blood and stool tests however this did not reveal anything of concern. I had allergy testing, which was also negative (skin prick testing is not reliable for identifying EoE triggers). Doctors then suggested that the ongoing diarrhoea might be a psychological problem. One general practitioner (GP) actually instructed me to lie on my bed and practice mindfulness to try and stop myself from having another bowel movement. I insisted on a referral to a gastroenterologist. I had further blood tests (including coeliac serology) which were also negative.
I was put on a wait list for a colonoscopy, however as my blood tests were negative, I was not considered a priority.
Jane Doe - Another Company, LLC
Symptoms worsened. My hair was falling out at the front, giving me an odd-shaped receding hair line. I was dropping things and had constant brain fog, which was impacting work and study. I had multiple impactions with various foods and medications. I had frightening episodes where I experienced strange pins and needles in my upper body and head, with waves of nausea. I was referred for a brain MRI, which was fine, and multiple ECGs, which were also fine. As I was diagnosed with Raynauds Disease in childhood I was referred to a rheumatologist. Various tests for autoimmune disorders were also negative.
I relocated from a regional town back to Darwin in November 2019. I went to see a new dietitian and remember trying to hold back tears as I showed him my pathology results. I was exhausted and had mouth sores and low iron levels again. I explained that I could not understand why, as I was doing all that I had been told to do. I explained my testing history and the various unexplained symptoms I had been experiencing. He asked, "Are you sure you don't have Coeliac Disease?" He explained that the previous blood tests I had with the GP and the gastroenterologist would always be negative if I had not been consuming at least 10g of gluten each day for at least six weeks prior to testing. As someone who did not have gluten every day, my blood tests would always be negative, even if I was Coeliac. No other health worker had explained this to me. We did an experiment where I went off gluten for a two-week period. Some symptoms improved significantly. On the dietitian's recommendation I had genetic testing and discovered that I have the Coeliac gene. I will be forever grateful to this dietitian, who has changed my life. I feel that I was only taken seriously by doctors once I had the results of the genetic testing. By this stage the first gastroenterologist had left and was unable to transfer me on the hospital waiting list. I was advised I would need to start back at the beginning on a waiting list in Darwin. I decided to be seen in the private system and a GP referred me to a new gastroenterologist, who was able to see me immediately. I was booked in for a colonoscopy and gastroscopy and had to do a 6-week gluten challenge prior to the procedure date. This was an extremely difficult time- I had to consume at least 4 pieces of bread each day to ensure that there would be reliable test results. I was incredibly sick and had a lot of time off work. Testing found that I do not have Coeliac Disease but have EoE.
During the height of COVID (in the NT) I was prescribed a proton pump inhibitor and a steroid, which I took for a short time. This was due to the concern of needing to keep me out of hospital as much as could be prevented. However, it was always my preference to try to manage this disease without medication if possible. I did the 6-food elimination diet, ensuring that eggs, wheat, soy, cow’s milk, nuts and seafood was not consumed. I had another endoscopy but unfortunately still had active disease. Under the guidance of the gastroenterologist and the clinic's dietitian, I then started the RPAH elimination diet (in addition to avoiding the top 6 common allergens). It was only when consuming a low chemical diet that I finally felt well and symptoms resolved. The subsequent biopsy of my oesophagus was clear.
In the last 12 months I have had 6 gastroscopies. Testing has found that I have multiple food allergies. Food challenges through the dietitian has found that I also have intolerances to multiple food chemicals and additives.
I supplement with elemental formula to ensure I have adequate nutrition. Unfortunately, this is extremely expensive as adults are not covered on the PBS. My last month of elemental formula cost over $500.
Jane Doe - Another Company, LLC
Managing the disorder at home is fine. I eat a limited amount of safe foods and make most things from scratch. Eating out and social events can be difficult. Initially I felt obligated to eat when family or friends would make me a meal that avoided one or two allergens but included another. I did not want to be rude and initially thought “just a little won't hurt!” I quickly realised that this is not worth being sick for days afterwards. I often feel bad when out with family and friends, as I cannot eat at most restaurants locally. I always read menus online beforehand. At Christmas I brought my own food to prevent cross contamination. It has been a long journey, but I am so grateful to feel well and to finally have answers.
Story shared by Liana; February 2021