Our Journey with EoE
Well, where to start..
It was a few years ago when we noticed our son was complaining his stomach hurt, so I just figured it was milk upsetting his stomach. Milk upsets my stomach also so we were thinking a lactose issue. We switched him over to almond milk, easy.
Over the next few years I never really noticed much complaining or any pain until around the beginning of 2019, that’s when the pain really started. The pain was becoming so consistent and started coming with really bad headaches, like to the point he was folded over in pain. I could never tell if it was food bothering him or what since it would come at totally random times. So we eventually went to the doctor, they sent us off for abdominal X-rays to check for constipation and got put on a medicine to help with that.
After a few weeks he was STILL in pain, so we were back at the doctor. We had no idea what to look for, the doctors were even a little stumped because well headaches, stomachaches and leg pains were his ONLY symptoms. At this point I was using our trust dear friend Google and searching for everything possible. In the mean time they wanted to do blood work, that all came back normal. When I turned to our trust friend Google, that’s when Celiac Disease popped up! He actually seemed to have a lot of the same symptoms. So off to the Dr. we went again and this time they sent us to a Gastrointestinal Doctor.
You know how it takes forever to get into a specialist sometimes, well we waited a few months. Oh and it ended up being longer because he randomly had 3 weeks of no pain! It was totally weird and unexplainable. We finally got into the GI and he did his things, told us he wanted to schedule an endoscopy to rule out a few things.
Finally November 2019 rolled around, let me remind you that this all started in the beginning of the year. We finally had an endoscopy scheduled after being a mystery diagnosis for so long. We had hope the Dr was going to find something and give us a diagnosis! So, November 11 came and he had the endoscopy done, Dr came out and said everything looked good and we will get results in 1-2 weeks.
Ugh.. seriously waiting that long seemed like a life time. I was checking the app every single day hoping there was an update. Finally after almost 2 weeks I got a call.
He has an allergy to dairy and Eosinophilic esophagitis (EoE).
Okay, awesome now what the heck is that and what do I do. Well first we eliminated ALL dairy per Dr’s orders and got put on a medicine. Guys, I never realized how much stuff has dairy in it! Now to figure out what EoE is, turns out it’s an allergic inflammatory disease of the esophagus. First, I found an amazing Facebook group for kids with EoE because I needed all the help and info I could get. I am thankful for ALL of the information resources on the internet these days because it would have been a lot harder to gather all the info as quick.
It has only been 3 months since his diagnosis but he is doing so much better since eliminating dairy. He needs another endoscopy very soon to see if his numbers have gone down or if we need to head to an allergist.
*This post does not provide medical help, it is our journey.