I guess it’s about time to stop being so cryptic about “my disorder” and “certain challenges that I face.” Here it is: I have a disorder called, “Eosinophilic Esophagitis.” (What in the world is that?!) Okay, I’ll tell you–and I’ll tell you with my story. (This is taken from another note I posted on FB from a while back).
For as long as I can remember, allergic issues (psoriasis, asthma, and eczema) have been a part of my life. As I grew older, I started having classic hay fever and seasonal allergies as well. When I was a teenager, I started having horrible pains in my chest and a constant feeling of burning in my stomach and chest. I went to the doctor who promptly told me it must be excess stomach acid, and basically to deal with it; I was told to drink milk whenever I had that burning sensation so the milk could help neutralize the acid. I dealt with the issues like this until after I was married. I noticed, however, that milk really was not helping, and in fact, that I always felt worse after I drank a glass. I went to the doctor again, who diagnosed with me GERD (gastroesophageal reflux disease). He prescribed a pill akin to Nexium and told me I would soon feel better.
I didn’t feel better. In fact, after the birth of my 2nd child, things went further downhill. Instead of just feeling the burning sensation, I started randomly vomiting, the pain in my chest and throat became unbearable as if I had strep throat all the way down my esophagus 24/7, and food started getting stuck in my throat if I didn’t chew it really really well. I also started having trouble breathing almost every evening, especially after eating things like pasta with sauce and cheese, and I had a really hard time sleeping because i felt I couldn’t breath or because the pain was so bad. I went back to the doctor who scheduled an endoscopy to see if the acid had caused damage to my esophagus that might need extra or different medication.
July 31st, 2007 was the day I got the official diagnosis. The doctor told me that I had 30-40 rings down my esophagus which was indicative of Eosinohilic Esophagus, or EoE. I had never heard of the disorder and truly had no idea what that meant for me and my family. Whenever I had received a medical diagnosis before, I was promptly given instructions and usually some type of medication so I could feel better quickly. I soon realized, though, that with this being such a rare and unrecognized disorder, none of my doctors knew what to do with me. I tried getting the rings “dilated,” I tried swallowing steroids, and I tried to just deal with it. Finally, on a visit to my allergist’s office, I saw a poster up about an eosinophilic disorder support group and went the first time I was able to. The mother of a daughter with one of these disorders was the head of the group and helped me locate doctors who knew a lot more about these disorders than any I had encountered and I got on my journey of really trying to figure this stuff out.
Now I feel I finally understand the basics of the disorder. Eosinophils
are white blood cells that normally come out to fight against parasites, but in a person with one of these EGID’s they come out to fight against food or other swallowed allergens and end up causing damage and pain wherever they come in large numbers through the digestive tract.
Treatments I have tried: Drinking a completely hypoallergenic formula mixed with a gatorade as my sole source of nutrition to try and get the inflammation down, adding foods back in and then getting an endoscopy to see when the eosinophils come back, swallowing steroids, various medications, and many combinations of these treatments.
Since that day, I have found out that both allergens in the air and food allergens contribute to my disorder, although I am still unsure as to exactly what is causing my issues. I am currently “trialing” foods–adding one food back in at a time to see where I have reactions. I know for sure that my eosinophils go up when I have milk products and peanuts and tree nuts, but I also know there are other things I haven’t figured out yet. Since I trialed milk about a year and a half ago, I have also added stomach inflammation to the mix (instead of just my esophagus) and we are still trying to figure out why that is happening.
These disorders are hard to live with. The hardest part for me is when I am following my treatment plan so well– not eating anything I shouldn’t, taking all my medications, etc.– and I then I still have a bad day with pain, nausea, food getting stuck. . . Emotionally, it is really hard to live with. Then, on those days I think, “well, then why I am even sacrificing all of this stuff if I’m going to be in pain anyway”, then I go eat something like pizza (which is probably one of the worst things for me) and the next day, I can’t do anything at all because the pain is so much worse. The road to feeling better with these disorders is full of ups and downs and twists and turns and sometimes can get very discouraging.
Here’s the kicker: After reading this, you may think that I have it hard. However, I have actually a pretty mild form of an EGID. These disorders are actually more common in children, and there are many, many children who cannot eat ANY NORMAL FOODS. There are many who have to get all their nutrition from this amino-acid based formulas through feeding tubes. There are many who get a birthday cake made of cardboard or ice because they can’t eat even an “allergen-free” cake. I have met several of these kids and they are amazing and huge examples to me.
I am not writing this for sympathy or to sound pathetic–I am writing just so you can get to know me a little bit better and maybe, if you know someone with these symptoms, you might offer that they get checked. Everyone has their trials, and this is just one of mine. In a strange way, though, I am grateful for it. I have seen many miracles and blessings because of this and have gained many new friends.
I am so grateful to everyone who continues to be such a support to me as I try to figure this stuff out. And to all who have read this, if you hear or know of someone who has similar symptoms, please encourage them to get an endoscopy with biopsies to find out what is going on. These disorders can take so long to diagnose, and if they’re not diagnosed, they can’t get treated.
Thanks for listening!