Daily Struggles from Living with EoE, Eosinophilic Esophagitis

As a child, life was good. I never had any major issues aside from the occasional cold, ear or throat infection. My life was a normal and happy one dealing with all things kids usually deal with like bullies at school, homework, boy crushes, and just being a normal kid. I had no allergies to anything and my diet consisted of pretty much everything I could get my hands on. I was 100% happy and healthy.

Many years went by and it was time for me to have a child of my own! I gave birth to a healthy baby girl! She was a very happy and healthy precious little girl! A couple of years after she was born, I start noticing some changes in myself. I noticed I started getting acid reflux more often after certain foods, my stomach started hurting more often, and sometimes I had a bit of difficulty swallowing food. It wasn’t with any certain food, it was all food in general. It only happened every so often, so I honestly didn’t think much of it. I figured it was just the joys of getting older so I just started accepting that my teenage eating habits would have to take a back seat.

Another year or so passed by with the same issues of some acid reflux, stomach aches, and some difficulties swallowing. I managed just fine so I didn’t worry too much about it and continued going through life like normal.

I was sitting at the lunch table at my old job back around 2004 with the rest of my coworkers eating some take out when all of a sudden, it hit me. The grilled chicken I was eating managed to lodge itself in my throat. Thinking this was like all the other prior episodes I’ve had, I excused myself for a moment and went to the restroom. The water I was drinking wasn’t helping push it down like it normally does so I attempted to unlodge it by coughing and trying to gag it back out.

Big mistake! The chicken was now completely stuck and blocking my airway! Panic set in. Not being able to breathe, I sprinted back to the lunch room and motioned for help. My boss at the time immediately ran over and successfully performed the Heimlich maneuver. I was breathing again and the chicken was out. I was finally able to breathe a sigh of relief along with embarrassment after what felt like forever.

Since that first choking episode back in 2004, I continued having several more life-threatening episodes, approximately 7 more times, between 2004 and 2013. Yup, that’s right. I went about 8 years not seeking any medical attention. The last 3 choking episodes happened all within the same year. I’m an idiot. What prompted me to finally go to the doctor and get checked out was the last incident during Christmas time when I choked on the most delicious filet mignon I’ve ever had. Of course, I couldn’t enjoy it. My cousin ended up doing the Heimlich maneuver right in front of the whole family. Let’s just say the rest of my family was now extremely concerned and insisted I go to the doctor once and for all.

So that’s what I did. I was referred to a very good gastroenterologist that ended up sending me to get an endoscopy to see if there were any issues in my esophagus. The procedure was surprisingly fast and painless. I was put under and woke up without feeling any pain or discomfort. Just a slightly scratchy throat. My doctor then explained to me that during the procedure, he did, in fact, find that there was some sort of obstruction in my throat that was making it very difficult to swallow. This was the cause of the numerous choking episodes I’ve had over the years. He was able to clear the obstruction while getting a sample for biopsy.

The word “biopsy” alone had me extremely nervous. Any time I’ve heard that word, it was always followed with the “c” word. Cancer. My doctor assured me there was nothing to worry about right now and that he would be in touch within a few days with the results.

Immediately after having the endoscopy done, I felt instant relief in my throat. I was told I could go ahead and eat something if I felt comfortable enough, so of course, I did. The first thing I ate afterward was the most delicious Dunkin Donuts munchkins! I remember it as if it were just yesterday. As soon as I took the first bite, it slid down my throat so effortlessly! I didn’t have to reach over for anything to drink in order to push it down! I almost started crying a bit due to the overwhelming amount of emotions that flooded me. You have no idea how good it felt to be able to eat without thinking I’m going to choke. Life was good again!

A few days went by and I was eating like a champ! Not a single worry in the world of any choking in my future. I honestly, and ignorantly, thought I was all better and nothing was going to happen. That’s when my doctor’s office called and asked me if I could stop by to go over the results of the biopsy. Now I know that when they make you go to the office to discuss the results, it’s never a good thing. Otherwise, they would have told you over the phone that the results came in clean and I’m all good to go. I made the next available appointment and then let panic set in as I waited to get the results. Was I dying? Did I have an incurable disease? What’s going to happen now?

My first question to the doctor was “Am I daying doc? Give it to me straight!” He laughed and told me no, I wasn’t dying and I can relax now. He explained to me that based on the results, it appears that I have this rare disease called Eosinophilic Esophagitis, also known as EoE.  What?! What on earth is that and how the heck did I get something that sounded so strange! I’ve always been 100% healthy!

Eosinophilic Esophagitis, EoE, is a chronic allergic/immune condition that causes inflammation of the esophagus. Apparently, it’s a rare disease that has been becoming more known within the last few decades. When I met with my doctor, he admitted to me that it’s still a fairly new disease that a lot of doctors are stating they have no knowledge of just yet. This was not very comforting to hear. While he did explain everything to me, I had to do some of my own research to validate everything he said.

So here’s what I’ve learned. In laymen terms, EoE is basically an allergic swallowing disorder. When you eat something that you are allergic to, a type of white blood cell called eosinophil starts popping up in your esophagus. This then causes inflammation. Although the main trigger is food, it can still be triggered by pollen or other airborne allergens as well.

Another disease that is often associated with EoE is Gastroesophageal reflux diseases, also known as GERD. Some doctors actually misdiagnosis patients thinking they have GERD instead of EoE. In my case, I have both. My stomach is producing acid that is being pushed back up my esophagus. Most times I don’t even know it’s happening. When I do notice, I usually just think I’m having a minor acid reflux episode from eating something that may have been a bit too spicy or something.

Because of this GERD disease, my esophagus has excessive damage to it which doesn’t work well with the inflammation when a food allergy is triggered. To paint you a better picture, an esophagus is supposed to be smooth all the way down allowing food to just slid right on down into the stomach. Mine looks like a railroad track all around.

So we’ve established that some sort of food allergy is causing these issues. After sitting down with my doctor that day to discuss this rare disease, I was referred to an allergist. I was given a series of allergy skin scratch tests where various allergens are poked onto your skin. In this case, rows upon rows of different allergens were poked onto my back. Within a few moments, any pokes that showed reactions meant you had an allergy to that certain thing. So what did I react to?

So it turns out the only thing I reacted to was eggs. Wonderful. Do you know how many things consist of eggs that I have eaten over and over again? Pretty much everything. This was a huge lifestyle change that was ahead of me.

Let me clarify this a bit for you. Although I’m allergic to eggs, I don’t have an immediate reaction to it. This is what made it so difficult to figure out why I was having so many difficulties over time eating. So in other words, eating something that has eggs right now will only affect me over time. So thankfully, I don’t have to be rushed to the ER if I eat something with eggs. That’s the only good thing I can think of about this allergy.

The EoE diagnosis has been given. The food allergy has been discovered. Now what? How is EoE treated? Is it curable? Will it go away? What am I going to do now to fix all the damage that has been caused over the years to my throat? I’m sad to report that currently there is no cure for EoE. Unfortunately, since it’s a fairly new disease, there aren’t any FDA approved treatments either. But that didn’t stop my doctor from prescribing some sort of treatment to help control it.

The first prescription he gave me was to control the GERD. It’s an acid reflux medication called Omeprazole. This medication is supposed to decrease the amount of acid in your stomach along with help decrease heartburn and difficulty swallowing. It’s also supposed to help heal the damage caused to the stomach and esophagus from all the acid build up.

The second prescription that I was given was Flovent (Fluticasone). An inhaled steroid that was given to me in the form of an inhaler. It’s the same medication given to individuals with asthma. Rather than inhaling it though, I was instructed to swallow it after pumping it through the inhaler. This medication is supposed to prevent and reduce swelling.

While I was skeptical about using a steroid, I did what I had to do and began treatment immediately. During the time that I was taking both these medications, I experienced successful results. My acid reflux was under control and I wasn’t forcing food down with liquid as much anymore. As a matter of fact, I was eating almost perfectly. I didn’t have a single choking attack since starting the treatment nor did I have any of the side effects that apparently come along with each. I would say both medications were on point!

Some time went by and the Hubby and I decided to try for a baby. Unfortunately, this meant I had to stop using the medication I was prescribed. I wasn’t too concerned since everything was pretty much controlled at this point. I figured after having the baby and breastfeeding, I would just start right back up.

Well, I did have a beautiful baby boy who is now 2 and a half years old. The breastfeeding days are long gone and I’m free to take whatever medications I need again. The problem now is I no longer have any health insurance since I am not working anymore. After having my son, I, unfortunately, lost my job and haven’t been able to get back into the workforce, so medical insurance is a luxury at this point.

Today, I’m living with EoE and not taking any medication for it. Unfortunately, since being off the medication, I have had several choking episodes again. My hubby has saved my life twice now this year using the Heimlich maneuver. I can’t begin to describe how emotional and scary it gets when it happens.  I try my very best to stay away from anything that has eggs, but sometimes it ends up happening. My only hope is that I’ll be able to get health insurance sometime soon and go back to the doctor to get back on the medication. Until then, I’m stuck with dealing with daily eating struggles.

Eating is my biggest challenge. No matter what I’m eating, I must have a glass of water on hand to push down every single bite I take. As soon as I bite into something and attempt to swallow it, it instantly just sits there in my throat. I’m not exaggerating here. 100%, every single bite. Not all bites turn into choking episodes, thankfully, but it can easily escalate to that in a split second. This is when I reach for my drink. I have to take small sips because too much water floods my throat and ends up coming right back up. This also provides a greater risk of the obstruction to move and block my airway.

Most times I usually go through at least 2-3 glasses of water in order to be able to finish my meal. A lot of times, carbonated drinks help a lot better such as Perrier Water. I personally don’t care for the taste, but it gets the job done without drinking a lot of sugar-filled sodas.  As a result of drinking so much while I eat, I end up getting a bit of a stomach ache. On the bright side, I also get fuller a lot faster which in turn results in eating smaller portions. But this also leads me to get hungrier again a lot sooner.

A lot of times, when the water doesn’t help and I don’t feel the food starting to move down, I begin to panic. And what happens when panic sets in? Usually, your muscles tighten up and you get ready to react, depending on what you are panicking about. In my case, my throat starts to tighten up. This is the beginning of a choking episode for me. My face becomes flushed, my body tenses up, and then it hits me like a ton of bricks. I stop breathing. My first instinct is to rush to the sink and try to unlodge it myself. The next step the handy Heimlich maneuver.

Choking episodes are a very emotional and traumatic experience for me. Usually, when it happens, I lose my appetite and experience anxiety and stress for the next hour. But what if I’m alone? Well, I better successfully unlodge that food by gaging it up before I pass out! I can’t tell you how many times I freak out when I’m eating alone. Or worse, when I’m in front of my children, who can’t do anything to help.

Some days, I can actually feel pain at the bottom of my esophagus right at the opening of my stomach. A few years ago, I had a horrible episode where I couldn’t eat or drink anything because it felt like I was eating knives. It lasted about 24 hours before I was able to eat anything again. Thankfully, that hasn’t happened again, but I do fear it may be in the future for me once again if I continue leaving my condition untreated.

Since finding out I am allergic to eggs, I’ve had to eliminate many things from my diet. So many delicious baked goods are no longer approved! Birthday Cake. Cookies. Brownies. The horror! I have a major sweet tooth, so this is especially difficult for me! Although, I have been able to find some sweets that don’t contain eggs in them. Did you know that Nabisco Chips Ahoy doesn’t contain eggs!! I was pleasantly surprised! 

Breakfast tends to be pretty bland for me since I was always used to have eggs. Now, I cook breakfast for everybody else with all these amazing looking omelets and I’m stuck eating either cereal, oatmeal, toast, or egg free pancakes. I try to stay away from pancakes so I don’t get any fatter though!

No more breaded food! Anything breaded is more likely dipped in beaten eggs in order to get the bread crumbs to really stick on there. Of course, there are other alternatives to use for breading food, but when you go to a family function or a restaurant, most likely they have breaded food with eggs.

While there are many options these days for those with food allergies, it still gets difficult at times when you just want to go get something you know you used to love so much. I love salads and a lot, if not most, dressings contain eggs. Ranch dressing was always one of my main go-to salad dressings! Not any more!

My case is nowhere near as bad as a lot of cases I’ve come across online. This disease is more popular amongst children, sadly. I read of a case where a 6-year-old was diagnosed with this disease and had to be fed through a feeding tube for most of her life because everything she ate pretty much triggered a food allergy episode. It was impossible for her to eat anything at all. Her family learned to live with it and adjusted their lives to be able to make her as comfortable as possible, but no matter how I look at it, it’s always going to be difficult for her.

So how can you tell if someone you love or even yourself has signs of EoE?

The symptoms are mostly the same in both adults and children. If you experience any of these symptoms, don’t be like me. Go see a doctor right away!

  • Difficulty swallowing
  • Food impaction (Food getting stuck causing choking, which is a life-threatening emergency)
  • Chest and upper abdominal pain
  • Vomiting (mostly in children)
  • Failure to thrive (mostly in children)

It’s important to understand that these symptoms are the same symptoms that occur with GERD. This is why most doctors will diagnose GERD over EoE. If this is the case and you aren’t getting any better with the GERD medications, seek additional medical attention and bring up the possibilities of EoE.

While my case was limited to only eggs, thankfully, there are many other food allergies that can trigger this condition. The main ones found have been dairy, eggs, soy, and wheat. If you suspect you may be allergic to anything, get yourself to an allergist as soon as possible to get an allergy test done. It’s better to be safe than sorry.

While food allergies seem to be the main culprit for EoE, environmental allergies have also been found to trigger it as well. Those with asthma, eczema, atopic dermatitis or allergic rhinitis are also at risk of having EoE.

If you’re able to, try to look back at your family genes. Genetics play a big role in EoE and is certainly a good reason to check out your family medical history if you can.

The purpose of this article is to raise awareness about EoE and help others identify it sooner rather than later. Especially in children. So many doctors misdiagnose this disease since it is a fairly new disease without any FDA approved treatments.

Join me in raising awareness for this difficult and rare disease! Share this article with as many people as you can and make sure you pay attention to yourself and your loved ones. Don’t be as ignorant and stubborn as I was and seek medical attention as soon as you think something is wrong. If something doesn’t seem right or is out of the ordinary for you or anybody you know, put pride and stubbornness aside and get checked out!

How many of you know how to perform the Heimlich maneuver? You’d be surprised how many people have no idea how to do it. When I met my husband and explained to him my problem with eating, he admitted to me he had no clue how to save my life in case I ever choked. It’s always a good idea to educate yourself on first aid. Especially with kids in the house.

Stop and think for a moment. Do you know what to do if your child or somebody is choking? Did you know that what you need to do for an adult shouldn’t be done for a child? I cannot stress enough the importance of knowing first aid and CPR. You never know who you’re going to save. Sign up today with the American Health Care Academy and register to get CPR and First Aid Certified all online! You don’t even need to go to a classroom to get it done! It’s all online.

To find out more about National Eosinophil Awareness Week, visit the APFED, American Partnership for Eosinophilic Disorders, website. During this week, patients, caregivers, professionals, friends, and family will be setting up efforts to teach others about eosinophil-associated diseases and how so many lives around the world are being affected by these diseases.

If you want to help raise awareness but don’t know how then go check out this day to day guide that gives you an idea of different things you can do during National Eosinophil Awareness Week (NEAW).

Here’s a brief breakdown of the day to day guide.

Sunday, May 19th, 2019

Blast your social media pages with known facts about any associated diseases, such as EoE. Share your story or that of a loved one. contact your local media about it to get your story shared.

Monday, May 20th, 2019

Make a donation to APFED and encourage others to do the same. Join the APFED #EndEos #WithLove campaign on Facebook! I will be creating a fundraiser as well and will provide the link as soon as I’ve done so.

Tuesday, May 21st, 2019

Join the NEAW community on Facebook and post your NEAW activities. Coordinate or plan a fundraiser or find a local fundraiser to be a part of.

Wednesday, May 22nd, 2019

Change your facebook profile photo to show you love someone with EAD by following this link and use the “search” box to find “NEAW Frame 2018.” Wear a magenta colored t-shirt to school or work and encourage your friends and colleagues to do the same.

Thursday, May 23rd, 2019

Download one of these NEAW images and share them on your social media pages. Wear a magenta colored shirt to school or work again. Share the APFED’s fact sheet with as many people as you can.

Friday, May 24th, 2019

Those of you who have dealt with any of these diseases, reach out to those who have been supportive and thank them.

Saturday, May 25th, 2019

Invite friends and family to take on the Eat Like Us for a Day Challenge. Ask others to change their diet for the day to eat the same way as others suffering from these diseases.

Thank you all for stopping by and listening to some of my personal and emotional struggles dealing with EoE. I truly hope you join me during NEAW to help spread awareness and bring more knowledge into the world about these diseases!

Don’t forget to check me out and follow me on social media @TheTinkerBug, on Instagram, Twitter, Facebook, and Pinterest. I always follow back!

Be sure to sign up to my newsletter to get notifications on my latest blog posts. 

 If you’ve enjoyed this article, feel free to Pin it with the image below and help raise awareness!

16 thoughts on “Daily Struggles from Living with EoE, Eosinophilic Esophagitis

  1. I really hope that you are able to find work and health insurance soon! It’s terrible to hear that you are suffering when your condition appears to be relatively easily managed with a couple of simple medications 🙁

    1. Thank you! Slowly but surely, I’ll find a way. Where there’s a will, there’s a way. 😉 Just need to start making some more money! This is a start for now. Thank you again for your comment!

  2. Another great informative post. I had no idea what EOE was until I read this post. Also, I’m sorry that you struggled for 8 years before seeing a doctor. Don’t feel too bad. I went about the same time before seeking treatment for anxiety and I often look back and wonder why I didn’t seek help sooner. Thank you for sharing this information with ut.

    1. Thank you so much! Hopefully, I can get out some more informative posts as I grow my blog!! Thank you for your support! 😉

  3. Wow, I never heard of this until reading your post! (I know you’ve heard that over and over again). I could see how living this would be really hard.
    I’m glad you received treatment, though and figured out that eggs are a trigger. I hope you continue to receive treatment and healing –and our health industry could certainly use some improving. Prayers to you and your family.

    1. Thank you for your prayers! The health industry is in need of a major reboot in my opinion! Thank you for stopping by and commenting!

  4. My nephew has EoE! There isn’t much he can have. It is actually easier to remember the things he can have over the things he can’t have. He is 9 now and was diagnosed when he was 3.5 and it is easier for him now to know to stay away from the trigger foods.

    1. Poor thing!! I’ve heard and read that it’s usually worse and more common in children. What a horrible thing he has to go through! I feel his pain, although he seems to have a worse case than me.

      Thank you for stopping by and commenting! Be sure to spread the word!

  5. Such an informative post! What really stuck with me is when you mentioned being scared of eating alone. It’s really amazing what we take for granted. Enjoying a nice meal, especially with loved ones, is one of them. I can only imagine what it most be like to have to carefully eat every bite of my meal in fear of choking. It’s sad that you’re having trouble with insurance. It often seems like money is more important than saving lives.

    1. I’m glad I could give you some insight! It truly is amazing how many things we take for granted these days. Don’t even get me started with insurance! At the end of the day, pharmaceutical and insurance companies are truly only out to get rich on unsuspecting people. It’s so sad!

      Thanks for stopping by and commenting!

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