My life living with EoE

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 ๐Ÿ™‚ and let me just say it sucks! It’s confusing and interferes with life at the worst times. I was diagnosed about six years ago.

May 17-23 is National Eosinophil Awareness Week, so I thought I would tell you a bit about what I have.

ribbon-edu-apfedMy 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 myself 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 with 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.

Eosinophilic esophagitis (EoE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. Basically, your body attacks itself. In my case, my esophagus is forming rings and closing itself.

Now I should also mention there were a few more 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 image 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 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 driverย 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. EoE is usually caused by 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 to Lansoprazole.

So here I was, having to learn to eat all over again. 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 short cuts, no going through the drive thru anymore. Nope, everything had to be made from scratch. I will admit it I HATED it 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. Another reason this disease is so annoying, doctors don’t even know what the correct course of treatment is. So I have been taking care of myself through food, and I’m getting better, I find it so much more easy to think and concentrate on work. 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 kinda of annoying.

Now I’m an internet junkie, and I have been reading and reading everything I can on EoE (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 across essential oils. Recently I have become a ‘member’ of Young Living and am using oils to supplement my lifestyle. I have been trying this for the past three months, and I have felt them give me another boost into feeling normal again. The last few months have been wonderful, but I did have a recent food impacting that has me worried that something has altered again, but I still am having more good days than bad days. I have more energy and some of my drive back.

Currently here is what I am doing to try and tame this disease:

  • Morning:
    • 2oz NingXia Red*
    • probiotic
  • Afternoon:
    • 2 JuvaTone Tablets*
    • 2 capsules of Rainbow Light Women Supplements
    • B-12
  • Evening: 1-2 drops of JuvaFlex EO rubbed on my liver*
  • Throughout the day
    • eating whole organic foods
    • making meals from scratch**
    • Trying to eat well-balanced meals with lots of veggies
    • Diffusing assorted 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.

*supplements from Young Living containing essential oils
**I have also discovered Wildtree which has organic allergy-friendly meal starters, so they have been giving me a few short cuts 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 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.

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 EoE 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.

 


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6 Comments

  1. […] getting a workout without feeling like it’s a workout. I have noticed a big difference in my EoE symptoms when I work out, so working out not only helps my figure but really helps my overall […]

  2. Brandi T on December 11, 2016 at 11:15 pm

    I have EOE. I have delt with the whole food getting stuck issue. It all started 6 years ago just found out last year that I have EOE. And found out this year I have food allergies and am still trying to figure out if I have more food allergies. How did they test you for the beef?

    • jen on December 15, 2016 at 4:00 pm

      I’ve had a few different allergy tests done. Some where from scratch tests and I have also done some with biometric testing done from a holistic nurse.

  3. Kyra on February 28, 2017 at 9:09 pm

    I was recently diagnosed with EOE after having stomach problems my whole life! It was a relief to understand what’s wrong but you’re right – a total pain! I’ve been eating a whole-food plant based diet. I have the same allergies as you. Soy, dairy, peanuts, corn, basically anything GMO, chicken & beef. Although I’ve found that eating grass fed meat is much better, because those cattle aren’t fed soy or wheat like the normal meat industry cattle. I wonder if that would make a difference for you! But I’m totally in the same boat. I’m sorry! I just met with a naturopathic dr today and will be trying some probiotics and enzymes to help heal my gut/digestive tract since 75% of your immune system is in your gut, it’s likely coming from a damaged digestive tract! If you haven’t looked into doing some digestive healing that might help :). I like Dr. Josh Axe website!

    • jen on February 28, 2017 at 10:45 pm

      Yes I have found grass fed beef is better! I’m also noticing that anything with pesticides on it makes me flare up. Hopefully the Naturopath can help you find some solutions,

      I like Dr Axe too… I’ve been switching between his probiotics and Young Living’s.

      I see you have a blog too so I am going to go check that out. Thanks for posting ๐Ÿ™‚

  4. Caroline Mburu on April 9, 2017 at 12:23 pm

    Phew I stumbled upon your blog and you described my experiences to a T. Thanks for sharing your journey. I too started using Essential it’s or this reason and I am thankful to say I stopped using ALL my anti-acids. PS I’m also not a medical professional, with that said I find Digize and Lemon oil helped me the most. I’ll add the probiotics too.

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