What is EoE you may ask, well the official name is Eosinophilic esophagitis and don’t ask me to pronounce it because I can’t. I usually have my sister say it for me 🙂 and let me just say it sucks! It’s confusing and interferes with life at the worst times. I was diagnosed about nine years ago.
May 17-23 is National Eosinophil Awareness Week, so I thought I would tell you a bit about what I have.
My journey started with food getting stuck in my throat. It would cause this painful discomfort as I try to swallow food, it happened from time to time, but I blew it off because it was more discomfort than life-threatening. I figured it was just heartburn or something. Well, one day my husband and I were at this fancy fundraiser having a nice dinner, and I had this sensation that I was choking, but oddly I could still breath. I went to the bathroom and tried to throw up or swallow the piece of steak that was stuck, and it just wouldn’t budge. About after 15 mins (well ok it may have only been 5-10) I was able to toss it up but wow what a way to kill my makeup for the night, my eyes were watering and I was sweating so bad trying to figure out what was going on. So not fun when you are wearing a nice ball gown! So the following Monday I made a doctor appointment, it was a GP doc, so he quickly turned me over to a GI doc. After an appointment and endoscopy/biopsy, they determined I had EoE and GERD… kindly the doc wrote down what I had because even after he said it 2 times I still wasn’t sure what the heck he was saying…I wanted to ask him what EoE stood for.
What is Eosinophilic esophagitis (EoE)?
According to the American College of Allergy, Asthma & Immunology, Eosinophilic esophagitis, or EoE, is “an allergic inflammatory disease and typically chronic disorder that affects from one to four of every 10,000 people in the United States. It is a recently recognized disease with increasing diagnoses, resulting in part from growing awareness of the condition.” Basically, your body attacks itself. In my case, my esophagus is forming rings and closing itself. The fact that it has only recently been recognized added to my problems, as not a lot of doctors are used to seeing people with this condition. It was even more stressful that I didn’t know what was really going on for a while.
Now I should also mention there were a few more eosinophilic esophagitis symptoms developing up to this point too. I always just chalked them up to being a working mom of 2 kids (one with special needs) and knew I wasn’t eating the best I could along with some life stress mixed in. I was fatigued, I woke up many mornings feeling nauseous, I had more than average bouts of diarrhea and I was having a hard time getting along with life in general. I remember one work trip where I had to excuse myself from our morning team meeting to go throw up, I can’t even imagine what my client thought of me. I’m pretty sure she thought I was out drinking and parting all night, yea that was an embarrassing time of my life. At the time, I didn’t know I had EoE so I couldn’t even explain why I was this way. On a different occasion we went out for my sister’s birthday, and I offered to be the designed driver. Well thankfully sis didn’t drink much because I was so sick I couldn’t drive home and she even had to pull over on the expressway so I could up-chuck the popcorn I had eaten. How ironic right, the designed driver is the one that has to throw up on the side of the road… we still joke around that story from time to time.
After I had received news of the EoE diagnosis, I was referred to an allergist. One of the main eosinophilic esophagitis causes is food allergies, so now it was time to try and figure out what those were. So the results came back… allergic to wheat, soy, beef, dairy, and sesame. WAIT what??? I have been eating these items all my life, and NOW I was allergic to them (I was 36 when I found this out). It wasn’t making sense to me. But as I have learned this disease doesn’t make much sense. I was sent home with a few pamphlets, an epi-pen, inhaler and a prescription for Lansoprazole. I realized then that I had to pretty much start figuring out my own EoE diet to minimize my symptoms.
Check out the Webinar I did with Natural Nurse Robyn about the 4 steps you can take to heal Auto-Immune here.
So here I was, having to learn to eat all over again. I had no real guide for an EoE diet plan. I challenge you to find many foods in a grocery store without wheat, soy or dairy. The only way you can is by choosing whole foods, and that is what I had to do. There are no more meal shortcuts, no going through the drive-thru anymore. Nope, everything had to be made from scratch. I will admit it I HATED living with eosinophilic esophagitis at first, everything was so foreign and frustrating to me. I was learning all these new ‘alternative’ flours that I have never heard of in my life. But the learning has paid off. My health has improved and I feel so much better than I did a few years ago. I used to get colds almost every week during the winter season and this past winter I think I only had 1 bout of the sniffles.
I have stopped taking the Lansoprazole. 1) it’s expensive; 2) It’s not fixing the problem just temporary fixing it; 3) I really don’t like to be dependent on medicine, plus that medication has side effects too. I had one doctor tell me it’s ok to be on that for life, another said you should only be on it 2-3 years or it will destroy your stomach. When I hear conflicting information like that from two different doctors, I know there’s a lot to learn about that medication, just like there’s a lot to learn about EoE. I didn’t want to risk destroying my stomach, no matter how remote the possibility. Another reason this disease is so annoying, doctors don’t even know what the correct course of eosinophilic esophagitis treatment is. So I have been taking care of myself with my very own EoE diet recipes, and I’m getting better, I find it so much more easy to think and concentrate on work with what I’ve come to know for myself as my EoE diet. I still have good and bad days, and sometimes this disease is very hard to figure out cause it changes!!! I took another allergy test about a year and a half ago, and it revealed that I should also stay away from tree nuts and eggs. I know I need to go again, but I have been putting it off. In order to tell if anything is truly working you need to have a scope done and then more allergy testing, after 4 years of this cycle it gets kind of annoying.
Now I’m an internet junkie, and I have been reading and reading everything I can on EoE, particularly EoE in adults (and there isn’t much!). Trying to find out why it happens and why is it becoming more and more popular. Honestly, I think it’s the same reason there is more cancer in this world, more autism, more ADHD, more celiac and that would be what is in our food supply. I think all these pesticides and chemicals we have been living with over the past decades are causing us harm. I believe that is why I am feeling better because I am using a whole food organic diet to help my body heal itself. I’m getting rid of the toxins, and my body can function better.
**NOTE: This is my conclusion after all the reading I have done and my experience. I am not a doctor or a scientist so take it as you will.**
My research has also brought me to essential oils. Recently I have become a ‘member’ of Young Living (now leader) and am using oils to supplement my lifestyle. I have been trying this for the past two years, and I have felt them give me another boost into feeling normal again. I have more energy and some of my drive back.
Currently here is what I am doing to try and tame this disease:
- Throughout the day
- eating whole organic foods
- making meals from scratch**
- Trying to eat well-balanced meals with lots of veggies
- Diffusing Essential oils to uplift my moods
- Exercising – Trying to make it to Zumba at least 3 times, plus I have a dance class once a week.
Yes, many of my supplements are from Young Living and they contain essential oils. When I was researching different supplement companies this company’s standards really stood out and I feel I can trust what they put in their products. Some companies are pretty scary with the fillers they use. Check out Young Living’s Seed to Seal process here.
**I have also discovered Wildtree which has organic allergy-friendly meal starters, so they have been giving me a few shortcuts again. Their freezer workshops are such a time saver!
I’ve also learned to try and change up my schedule when I have a flare-up (when my EoE symptoms act up). I have learned to try and take it easier, to do activities that aren’t as stressful. I do think stress is a big trigger of my flare-ups, and now that I know that it’s EoE causing these problems instead of something I used to just dismiss as being tired or being a busy Mom, I respect what I’m dealing with and handle it more carefully.
If you have recently been diagnosed, I am so sorry. This disease is a huge pain in the ass! BUT it’s not the end of the world, it can be managed, the key is to figure out what works for you. Everyone is different, and that is what makes it hard to find what will tame your system. Have you been living with eosinophilic esophagitis? Please post any tricks that you have been using in the comments, I’m always for other ways I can help my health.
For more information on EoE, please see APFED.
To help with a cure please make a donation to Cured Foundation.