Home | Eosinophilic Esophagitis - Autoimmune Wellness Journey

Autoimmune Wellness Journey is a platform dedicated to sharing my journey of conquering Eosinophilic Esophagitis (EoE) and providing valuable information, research, tips, and suggestions about the condition and similar conditions. My mission is to offer resources to support others on a similar journey.

Where did it all start?

I first got the inspiration to start this website after a prolonged misunderstanding of a diagnosis I got around my 30th birthday. I had to go through a lot of trial and error and starts and stops but finally was able to figure out a good game plan to go forward with. I'm hoping this website can help others in a similar boat make the process a little more straight forward and a lot less painful than what I went through.

Summary:

The week before my 30th birthday I had to go to the hospital due to food impaction while trying to eat my dinner. It was a slightly traumatizing and very eye opening experience for me. At the time I was told I had GERD and was immediately put on some acid inhibiting drugs. Fast forward another year or so and I had a follow up with a new gastro doctor and they were summing things up as they understood it and said I had EoE that's causing my GERD. I had never heard "EoE" before but it was never explained to me the cause, just that it was GERD so I nodded my head and we went on with the appointment. After a while I decided to do a little more research on what exactly the medication was doing to my body and decided that with my medical history the side effects were probably not worth it. My symptoms had been under control for about 6 years at that time and my doctor gave me the go ahead to start weaning myself off with the help of famotidine so my body could start adjusting to producing acid again. It took some time, however, I got off the drugs and was doing well.

Another 4 months or so goes by and I decided I had been on a steroid based nasal spray for at least 15 years for my environmental allergies and that prolonged exposure to steroids probably wasn't the best for me. I did some research and found a non-steroid nasal spray that mitigated my symptoms and was happy to be at a place where I was not so reliant on drugs and their potential long term side effects.

About 1 month later I started noticing some tightness in my throat an increase in the amount of heartburn episodes. At the time didn't think much of it cuz these are all symptoms of GERD and so I just started keeping an eye on the amount of acidic foods I was consuming. About a month later, the diet adjustment hadn't done much and I found that I had free access to talk to a dietician through my benefits at work so I signed up for an appointment. During the appointment they were going over my medical history and I mentioned the gastro doctor said I had EoE causing my GERD but that I didn't really know what that meant. She hadn't heard of EoE so she said she'd send me some research after the call. When I received the email and read the first page my jaw dropped. Turns out EoE and GERD are two ENTIRELY different things that happen to have the same symptoms. Me being me, I went to work to figure this out. After a very extensive researching process discovering it was an allergy to something I was likely eating regularly, I met with multiple doctor and read everything I could find online. As I mentioned before, what I found was there is some data out there but most of it was limited to what EoE is and the medicinal treatments available. As I am a firm believer in combating the root cause instead of masking the symptoms as I had been doing when they thought it was just GERD, I decided the best method for me would be the elimination diet approach.

During this research phase, I found there are also countless other elimination diets out there so it tended to be very hard to just search "elimination diet". This leading me to the thought that it might be a good idea to have one spot for folks to go to find out more information, see my approach and how it went, and hopefully get inspired to try it themselves!

In the end I am just trying to live the best life I can with the cards I was dealt. I don't blame anyone, I am not bashing anything I've read, I am not saying the other options aren't viable for others, I am simply trying to identify what the triggers are for me and then alter my habits to avoid them, find substitutes, and live a symptom free life going forward!

*See disclaimer below

My Journey

My Research Info

High level - Game Plan

Phase one - Preparation

As you can imagine, completely eliminating the top 9 allergens from all foods, beverages, and even beauty products is a seemingly daunting process. However, it is a very important first step that is essential to make the next step possible.

Starting a food / symptom log 2-3 weeks prior to starting is a very good idea to get a better understanding of where you started. I was very aware I had symptoms, however, the extent of it wasn't as obvious until I started writing it down and highlighting how many times I was actually having them.

Reading ALL the labels for EVERYTHING is paramount. I cannot stress enough that ingredients are hidden in products you would think have no business in them. It is a very good idea to box up or tape off areas of the fridge and pantry that have all the allergen foods that you will not be able to consume. That way it is deminishing the possibility of grabbing something on autopilot that you can't have.

Phase two - Full elimination

This is an 8 week timeframe where you completely remove the top 8 allergens from your life (I sometimes call it 9 as most people do not associate coconut as a tree nut so I call it out as it's own line item). Is it easy? I'm not going to lie, no. Is it necessary to the process? Definitely! Does it get easier as you get used to it? Absolutely!

This step does make planning ahead VERY important. Eating at home will be the easiest, not to say that going out isn't an option, but it's incredibly limited. After the first couple times going out, I decided to create an Allergy "business card" that I would be able to hand to the wait staff so they could easily bring it back to the kitchen to make sure the chef had all the allergies and they didn't accidentally miss writing one down. The wait staff have seemed to have really positive feedback on the ease of doing it this way. It's not a bad idea to check out the menu in advance, choosing a few items that look like they may work and calling ahead to ensure there are no hidden allergens. This way you can really enjoy the experience instead of dealing with all the allergy stuff at the table.

During this stage, you are definitely going to want to keep that food / symptom log going. You will need to make sure your symptoms are getting less frequent and then stop completely before moving on to the next step.

Phase three - Reintroduction

At this stage your symptoms have stopped for ideally 1-2 weeks. This is when you can start, arguably the hardest part of the journey, though the most anticipated. You will reintroduce one of the categories back for a two week timeframe and monitor symptoms. If no additional symptoms occur, you move on to introducing the next category for the next two weeks, and so forth.

There will be categories where symptoms do arise and you will have to remove this and wait 2-3 weeks to mitigate symptoms again before trying the next category. Once all categories are completed, you have the option of either completely removing the categories that caused symptoms from your diet or take a more granular approach to the specific items in that category similar to how you did the broader category where you would choose one item in that group and track it for two weeks.

I tried reintroducing all tree nuts, peanuts, and coconut at one time. I ended up having symptoms right away but it was hard to figure out which was the trigger so I had to stop them all and will need to revisit down the line. When I went to the next category, fish and shellfish, I decided to pick one fish to try first for a few days and then one shellfish for the next few days and take it a lot slower due to having the issue with introducing too much at a time last time around.

Your doctor can give you more information on the best order in which you should reintroduce the allergens based on your unique experience, however, I have a cute infographic on the Resources page for reference for a likely order.