Recently I was diagnosed with a new disease called eosinophilic esophagitis.
As I was listening to the doctor telling me about how it is a relatively new disease that has been on the rise over the last decade, I thought, are you kidding me? Who gets a new disease?
I wanted to share my experience with eosinophilic esophagitis (EoE) as I never know who might land on this post and have some advice to offer.
I also wanted this to be a post to be a reminder of the importance of listening to your body. Our body will usually tell us if something is not right, which was the case with me and my “new” disease.
Periodically over the last year or so I would get the uncomfortable sensation of food getting stuck in my throat.
I chalked it up to eating too fast and would kick myself for causing the problem.
But over the past six months or so, the episodes with difficulty swallowing increased.
On a number of times, I would be so uncomfortable and scared I would choke, I would actually go to the bathroom and regurgitate the food to get rid of the sensation and bring immediate relief. Lovely, huh?
90% of the time when it happened it would be just be me alone with my little girls during the day and I was petrified I would choke or pass out in front of them with no adult to help.
Two times it even happened while I was driving. Terrifying.
I was embarrassed to tell anyone this was happening because I blamed myself. Finally one night, it happened at dinner and I mentioned it to my husband after a trip to the bathroom.
It was a good reality check when he told me, “That is not normal.” I knew it wasn’t, but I needed to hear it.
I think I was in denial because I didn’t want to face the fact something might be really wrong. Of course, in the back of my head I was scared I had some sort of tumor which was causing the blockage.
I was almost scared to go to a doctor to find out.
But then I looked at my two little girls and thought, no matter what the outcome, I need to get this checked out because my body is telling me something is not right.
Long story short, I was referred to a gastroenterologist who recommend an upper GI endoscopy, where they put you under and use a scope to see inside the upper GI tract.
During this time, they also take a number of small biopsies to test for abnormalities.
When I came to after the procedure, the doctor was telling me that to the naked eye everything looked healthy.
Thank God. Thank God. Thank God.
I was relieved, but at the same time, almost disappointed he didn’t see what could be causing this. Then I felt really STUPID for putting myself through the endoscopy if it was something as silly as eating too fast.
A week later he called and told me the results of the biopsies were in and I had a high number of eosinophils cells in my esophagus which was likely the cause of the swallowing problems. A term called dysphagia.
Eosinophilic esophagitis is an inflammatory condition where the wall of the esophagus becomes filled with these cells that are not supposed to be there.
The inflammation is thought to be an allergic response to a food allergy or allergies.
I have never had any allergies that I have known of, so I was shocked. Then I had a lightbulb moment thinking about my daughter’s food allergies. I guess the little apple doesn’t fall far from the tree?
I was referred to an allergist that put me through a first round of a skin prick test to test for immediate reactions to all the most common food allergens.
Nada. No reaction.
But those tests are not extremely accurate, so my next up is a skin patch test where they actually tape allergens on your body and leave it for 48 hours to test for delayed reactions. Therefore I will be walking around with an egg and other goodies taped to my back come July 8th. Good times.
If that comes back negative, I don’t know what I will do.
I was hoping something jumped out on the skin prick test so I could say, “OK! It’s dairy!” And then, no more dairy for me. But food allergies can be more elusive.
I hate the feeling I am consuming something regularly that is harmful to my body.
Down the road, I can also try out elimination diets, etc. But I am a little overwhelmed and taking things one day at a time.
In the meantime, I am on a Flovent inhaler twice a day, where I do two puffs and swallow the medication instead of inhaling. The medication is supposed to kill the cells. I don’t like being on it, but I don’t like these angry cells being there more!
Again, if your body is telling you something, listen to it. I wish I had a long time ago.
If anyone would like to comment, I would certainly appreciate it more than you know.
Image source: Mayo Clinic.