If you are stopping by this page, it’s because you or a family member either have an Eosinophilic disorder or you are wanting to learn more about this disease. Either way, we hope we can help you understand, relate, and cope.
If you want to read an official definition of EoE, you can read it here!
If you need help explaining this diagnosis to your child, watch this video with him/her!
I could type all day long about this disease, what it has done to our family, how we’ve coped, etc. But I have no idea what it actually feels like. During this process, we have developed a friendship with an amazing young woman who has been living with EoE for most of her life. I want her to tell her story because she can help you understand what your children are actually going through–or if you are the one with the EGID, maybe you will find a connection!
Danielle’s story is one of change, maintenance, and for me, hope. She is a well-spoken, determined former Division 1 college athlete living with EoE. She makes me believe that our boys, despite living with an EGID, can accomplish their dreams!
I hope you will take the time to read Danielle’s overview of EoE, and continue to follow her monthly series!
Danielle’s EoE Journey
So, you or a loved one has just been diagnosed with Eosinophilic Esophagitis. It’s pretty confusing, right? I mean between the scary stories on Google and all the doctor lingo that probably should be a language of its own, things can get complicated pretty quickly. So, I’m here to break it down for you, give you a new perspective, and hopefully calm you down a little bit in the process.
First off, let me tell you a little bit about me. My name is Danielle Travis, and I have EOE. I’ve had food issues my entire life, with my first memory being throwing up a Chick-Fil-A sandwich at age 4. From then on things only got worse and by age 14, I was desperate for answers. That’s when I was first introduced into the world of EOE. Like you, I was completely overwhelmed. Words were being thrown at me a million miles an hour- scopes, PPI’s, g tubes, j tubes, elemental diet, elimination diet, eosinophils, etc. My parents and I had no idea where to start.
Hint Hint: this is a good place to start.
If you are new to the world of EOE, then this site is a great place to learn the facts and understand what you’re going into. Or maybe you’re an experienced mom, who has 2 kids with EOE, and you could spell Eosinophilic Esophagitis backwards in your sleep, but yet you don’t know how your kids feel. This is also going to be a resourceful tool for you simply because I am that kid who has EOE, and I do remember how I felt at age 4, 8, 12, and so on. I have a better understanding of what your children are going through and how they are feeling than the middle-aged doctor who is scoping them every 2-4 months.
So let me start off with a little bit of that doctor lingo I was talking about earlier. Everyone has a white blood cell in his or her body called an “eosinophil.” Eosinophils do a lot of good. The problem arises when they are found in someone’s throat. When eosinophils are found in the throat, they attack certain foods because they think that that food is a danger to the body. There are no exact foods that trigger EOE in everyone- each person has his own foods that bother him.
To be diagnosed with EOE, you have to go through an endoscope. An endoscope, commonly referred to as a scope, is an outpatient procedure where a doctor puts you to sleep, looks down your throat with a small little camera, and scrapes pieces of your GI tract (biopsies). While it is a minor procedure, it is still criticized because of the invasiveness, expensiveness, and the fact that you have to be out under each time.
Right now, there is no cure for EOE, but, there are ways to lessen the effects of it. There are 3 main solutions:
- Elimination Diet
- Elemental Diet
I’ll explain each one.
Now, I’m not talking about taking some shakes and next thing you know your kid is going to be super hulk. Not those kinds of steroids. The kind I’m talking about basically coat your throat and let you eat more of what you want. The pros of it are that you can still eat what you want and you don’t really have to change your diet as much. The cons of it are that they do have a tendency to wear off after a while, and so it’s really like a Band-Aid for a bigger problem. Some people like them and have had great success. Other don’t. It’s all about finding what works for you.
**The steroid option is a decision you must make with your doctor, taking into consideration the long term effects of use.
The 2nd solution is something called an elimination diet. This is a diet in which you basically take out the 8 common allergy food groups, plus any other foods that you know set you off (from personal history or allergy testing).
The pros of this are that while you still have to eliminate some foods, you still get to eat a lot of other foods (in some cases–in others, much less food can be eaten). The cons of this are that it may not work and you may have to go on to the 3rd solution, which is the Elemental Diet.
The elemental diet is by far the hardest and most strenuous solution out of all three; but it’s also the one that has a 99% success rate. Bittersweet, eh? Most people do the elimination diet before they do the elemental diet. But this is what happens- you take out all foods for 3 months, and survive completely by formula. And when I mean all food, I mean, ALL food. I went on the elemental diet when I was 16, and by the end of the 3 months, I missed chewing. The pros of this diet are that it really works; it completely clears your throat of all eosinophils. The cons of this diet are that it’s extremely difficult to go cold turkey and not eat anything. While you do have to consider physical things such as hunger, there are other things you need to consider too like, “Will I be okay sitting at dinner with my friends and sipping through a straw?” “Can I go to my own birthday party and be okay with not eating my cake?” While these may seem like very depressing thoughts to think about, I can personally assure you that by the end of the 3 months, you will no longer be in pain from eating foods. And that is a beautiful thing.
I could go on and on about EOE. Living with it for 5 years now, I understand a lot more about it than I did, and I have a lot more thoughts about it. So as to not fill up the entire site with only the introduction, I will be writing a piece once a month that not only gives you probably the realest truths and hard facts about EOE, but gives you the insider’s perspective- all the ups and downs, blessings in disguise, and the secret world of EOE.
If you have any personal questions, I encourage you to either email McKenna Hydrick (founder of the site) or email me directly at: firstname.lastname@example.org
If you’d like to read other blogs about EoE, here are some we like: