EoE – a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus.
Yes how can anybody love a disease that causes so much stress on a daily basis. Well, this is our reality, this is what we have to deal with daily and we believe that education is key. This is such a great video to give you all the information you might need (EoE)
So we often get the question – so what is really wrong with Little M? She doesn’t look sick? Are you sure there is something wrong, she is so active? Some days I would go into detail to try to explain, other days I will just say she’s got an auto immune problem. It is such a difficult thing to answer as hardly anybody has heard about EoE – Eosinophilic esophagitis. Many people respond by saying don’t worry if she gets older she will outgrow it or my kids was also like that.
Symptoms of EoE may vary from one individual to the next and may differ depending on age. Our problem started when we introduced solid to Little M. We wanted to give her the best food possible so I made all her baby food from scratch. We only seasoned it with salt and sometimes some cinnamon or herbs. This was a blessing in disguise as it kept her health for longer. At first we though Little M had some or other tummy bug as she had a runny tummy and vomiting for about 7 weeks. Dr’s tested each time but it was all clear. She also didn’t pick up any weight and this was our biggest concern. Infants and toddlers often refuse their food or have trouble growing properly. When we were finally admitted to hospital they discovered she suffered from food impaction and this was one of the biggest clue to the gastroenterologist.
Allergy testing was not considered at first as she didn’t have any typical reactions associated with food allergies. The constant rash or fever was always brushed off because of her high infection count. Out of desperation our Gastroenterologist decided to do an allergy test and we were shocked about the results. She had so many allergies (food and environment) that we ended up seeing an allergy specialist to help us cope. Sadly a few weeks later we were hospitalized again and that’s when our specialist suggested a scope. She mentioned to us that she suspected EoE, but I never heard of it and wasn’t even interested in reading up about it.
She was booked for her endoscopy and after about 3 hours in theatre and 28 biopsy samples later, it was confirmed – Little M had EoE. I was so confused and had no idea what this would mean for us as a family. We soon realized that in South Africa there is not a lot of support for EoE and we had nobody to talk to. I have subsequently found some online support (EoE support) but it is still very hard some days as we do not understand everything.
Little M was placed on an elimination diet and the prescribed budesonide slurry for 6 months. After about 6 weeks we decided to stop the treatment as she had a constant candida infection due to the sugar used for the slurry. For us, the only viable solution was to control her diet and the environment. During 2016, she seemed to grow stronger and healthier with almost no set backs. In July 2016, we all changed our lifestyle to our low carb lifestyle and she started picking up weight.
Last week we had to take her back for her annual check up with her Gastroenterologist and allergy specialist – we felt so positive and was sure that we will get great news. Sadly, her allergies are just not clearing and it seems that each year the list just keeps on growing. The gastroenterologist suspected that her EoE also got worse and she prepared us for the worse – luckily Little M had no constrictions as suspected. This was the best news ever. We are still waiting for the histology results and I will update this as soon as we receive the results. Sadly, the gastroscopy showed sign of GERD and inflammation of her stomach lining. Little M will now be on Nexium for the next 30 days with the hope to relief the acid reflux.
So what causes EoE? The short answer is – they don’t know yet. It is believed that it is typically caused by an immune response to specific foods e.g. food and environmental allergies. Researchers have identified a number of genes that play a role in EoE, including a recently discovered gene, calpain14 (CAPN14), that is expressed primarily in the esophagus, so lets hope this will give specialist new information to diagnose, monitor and treat EoE.
Education is key and we are learning something new daily about her condition and how to ensure she grows up as a strong and healthy person. If you have any experience with EoE or any advise, please share with us as we would love to meet more people going through the same challenges we are.