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:
    • Young Living Master Formula (like a multi-vit)*
  • 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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19 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. Brooke on April 4, 2017 at 9:49 am

    Hello. My son has eoe. He is 18 months. Ppi for two weeks. It is helping him sleep better, but still in pain. Still haven’t found all of his reactive triggers. For instance yesterday he reacted to dairy free, soy free yogurt. I am desperate to get him off of medication and start healing his body. Can you give me some oil tips on where to start? I have used digize on him since 6 months to help the hard tummy at night. However we are still having major throat issues. He is losing weight likd crazy. If we don’t figure something out I am afraid they will put him on a tube.

    • Jen on May 1, 2017 at 11:00 am

      Hi Brooke, I will give you an email.

  5. 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.

    • Jen Rogers on June 20, 2017 at 8:59 am

      Hi I have a friend who has EOE, I am curious if you use Digize…internally or topically? She can’t eat anything with Citric acid.
      Thanks
      Jen

      • Jen on June 20, 2017 at 9:16 am

        I take DiGize internally… few drops in a capsule and then fill the reset of the capsule with grapeseed oil.

  6. Lori on July 28, 2017 at 3:40 pm

    Hi Jen. Just stumbled on your website. I was diagnosed with EOE in February. I’m seeing a naturapathic and taking many supplements and waiting for results of a food intolerance test. GI dr. pushes PPI’s which I tried and don’t want to stay on. I’ve seen an allergist for food sensitivities and tried an elimination diet which really didn’t help. I’ve lost so much weight, so I have an appt. with a registered dietician. My first question is when they say dairy and nuts does it also mean almond milk or coconut milk, if you know? And what about nonfat dry milk powder? Thanks!

    • Jen on July 28, 2017 at 4:35 pm

      Hi Lori,
      Sorry you are going though this! Just hang in there, it takes awhile to figure out your triggers but once they are figured out it gets better. Usually coconut milk is ok, but it depends on which kind of nut allergy it is though. Coconuts are considered tree nuts, but in general those allergic to nuts usually can have coconut, but again it depends on the person. If you have a Target by you check out Ripple milk. Believe it or not it’s made from peas but it tastes a lot like regular milk. I would try and stay away from Almond milk and soy milk. I have also found that going organic and staying away from process or foods with pesticides helps me.

      If you are on Facebook, check out my new group, https://www.facebook.com/groups/athomewithjen

      I’m going to be posting different tips and some meal plans that might help you out. Hope to see you in there and let me know how your journey goes.

  7. Mandy on September 1, 2017 at 9:31 am

    I’ve had trouble swallowing food for 9 years. An test 8 years ago showed nothing, but recently found out it was EoE after 2 more scopes, prompted by food being stuck for 2 hours. I’ve not done allergy testing yet and have no idea what triggers might be. My troubles seemed so random before that I could never pinpoint what might be causing it. Will that get easier? Will I be able to tell when certain foods/environments cause problems? What am I looking for? I’m also a YL member, but don’t know anything about Digize. Dr. has me on PPI for now, which I’m not excited about, but don’t feel like I know enough to quit taking it and make my own decision.

    • Jen on September 1, 2017 at 4:28 pm

      I think the allergy testing will greatly help you. Good luck on your journey and feel free to email if you want to chat.

  8. Alisha Brinton on September 14, 2017 at 12:07 am

    Hi there. I’ve suffered with EOE my whole life (I’m 33) & now 2 out of my 4 kids have it. I tested positive to EVERY grain, most vegetables & fruits, all nuts except pecans. Just for starters….it was devastating and miserable for years. I tried eating healthy, taking several different supplements that seamed like they would be promising but nothing helped at all. It wears you down so much. Finally I had a friend ask me “well what kind of water do you drink?” I was like huh? Tap water.. She gave me some information on ionized water and how when our bodies are acidic it becomes inflamed which is a breeding ground for disease.
    I was willing to try anything so she let me come to her house and fill my water jugs up—long story short, it helped my EOE about 80%! If I stopped drinking that water the allergies came back every time. I filled my water up for almost 5 years until I finally purchased a machine (you can get them for around $2k usually) I’m not saying this will work for everyone but it was truly a miracle for me & my kids. The machine is called a water ionizer. Don’t buy it from a sales rep, you will pay twice as much. Buy straight from the factory. (Learned that the hard way) The place I got mine from was alkaviva.com

    Good luck all—-maybe someday there will be a good treatment out there for this illness

    • Jen on September 18, 2017 at 9:40 am

      Interesting! We do have a Reverse Osmosis in our house, mainly because we have well water. I know this takes out the bad, but it also takes out some of the good. I’ll have to look into these systems. I’ve also been looking at Young Living’s HydroGize bottle, https://www.youngliving.com/en_US/products/hydrogize-water-bottle

  9. Eirka on October 2, 2017 at 9:48 am

    I was diagnosed last year with EOE and referred to an allergist. My food allergies came back negative so evidently no food allergies…although from reading online, it is said that some EOE allergies don’t show up on regular allergy tests since it is a delayed reaction vs. hives etc. I have had reflux since I was about 5 and I’m now 32. I am worried about being on high levels of medication due to the side effects and the fact that if I miss one day of medication my stomach immediately hurts and gives me issues. Thanks for your blog post. It helps to know we are not alone.

  10. Megan on October 17, 2017 at 6:34 am

    Hi Jen- Wow! Can I relate to this blog. I am 40 years old and still working to find all of my triggers for EoE. I have a scope scheduled for tomorrow. I am beginning to think that one of my triggers is pollen (right now ragweed is crazy high). I have done all the allergy testing, elimination diet and meds. I was good for about 2 months this summer but once fall hit, I have been beyond miserable. I was wondering if you use any YL oils on your neck? Does this help if so? I have copiaba that is supposed to be good for anti inflammatory uses. I am very new to essential oils. I am too scared to ingest any since I have so many allergies to pollen. Thoughts?

    • Jen on October 17, 2017 at 9:18 am

      Hi Megan! I hope your scope is going well. Yes, I used to have bad flare ups in Fall when high allergy season happens. I am happy to say that mine are nill to none this year! I have been working hard to heal my body and I think it’s working. Yes I have used oils on my neck and I also do take them internally… I pretty much use them everywhere ๐Ÿ™‚ It is VERY important that if you are taking them internally that they are oils that are made for that. i.e. Young Living has a vitality line that is marked specially for internal use. To help with the fall season I take a veggie capsule of Lemon, Lavender and peppermint. I diffuse copiaba, lavender and lemon for my dog (yes my dog has severe allergies too!). Everyone is a little different and your needs will change so its great to try different oils until you find the ones that help. I also use a iTivio scanner which helps me decide which oils may help me the best.

      Get with your upline to see if she has a scanner they also should have some resources for you. If they can’t help you then please contact me and I would be happy to help, jen@athomewithjen.com

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