Maybe you or someone you know have experienced this too?
I chose to share this because when I started googling blogs/articles or anything related to this I didn’t find many others that were in the middle of the road severity and it’s nice to know you’re not the only one. Thanks to health insurance, I chose to seek out medical help and management tools, because after 5 years of symptoms and having scary choking episodes in foreign countries I wanted to know if I could manage it instead of making it my normal.
So, why were you eating weird meals and foods for most of 2018—insert -> The Elimination Diet
Why the heck would you go on a (medically monitored) Elimination Diet?
To uncover what the culprit may be that is causing inflammation in the esophagus and has slowly led to rings, furrows, and a stricture (narrowing) of the esophagus. Essentially, episodes of choking (food impaction or pill impaction)
What happens when FOOD IS STUCK? Think REALLY Uncomfortable stretching inside your throat. I like to think it’s a similar effect to gauging your ear, but in a couple minutes instead of months.
So, the food feels like it is mostly down your throat AND THEN, uh oh…nope, there’s a large amount of pressure and I usually can’t swallow my own saliva, but I am able to breathe. I’ll know it’s gone down when I’ve burped and whatever air was trapped is released.
Sometimes, I only need to relax for a few minutes and the food will go down. I try to laugh or engage more in the conversations to pass the time until it moves along. OTHER TIMES, I cough a lot, spit saliva into my napkin, or excuse myself to the bathroom and involuntarily vomit saliva and eventually dislodge a piece of food the size of your pinky fingernail (or smaller). Or, head to the emergency room because if it lasts longer than a couple hours it’s advised you receive medical attention.
Fast Facts: 1 out of every 2,000 people lives with Eosinosphilic Esophagitis (EOE) with varying levels of severity. EOE is more common in men than women and it’s often hereditary (It runs in our family!). Children and adults are equally as likely to have EOE, or adults may have been living with it for years and not realized it was abnormal. Those with EOE often have multiple allergies and are sometimes put on steroids to bring down the inflammation of the esophagus and/or a liquid diet (Elemental Formula) that will allow the individual to eat a normal diet after XX number of weeks. This is the spark notes version, but it gives you some background.
How is it diagnosed?
Biopsies from your esophagus are taken during an outpatient endoscopy procedure.
A person can have severe acid reflux for years that will leave scar tissue in your esophagus that can cause narrowing and leave eosinophils in your esophagus (the tall-tale sign something is amiss). The average person has 0 eosinophils in their esophagus, any number over 15 is abnormal. If your swallowing returns to normal after taking an acid reducer (PPI) you’re one of the lucky ones.
So, back to the elimination diet. How does it work? In this case, my Gastroenterologist and Registered Dietitian worked as a team and we came up with a plan that would allow me to have the minimum number of endoscopies (which also minimized the amount of times I received anesthesia, because who wants to do that more than necessary??).
Over the course of 7 months I eliminated and reintroduced: Wheat, Dairy, Eggs, Nuts, and Soy. I personally refused to eliminate seafood and peanuts because, my symptom severity was moderate, seafood is a major source of my protein, and it’s also the lowest likely culprit.
I met with my dietitian twice and could e-mail any follow-up questions as needed, but I really only connected with my GI Doc pre-procedure and via emails.
It worked for us and I cancelled any office appointments that didn’t feel necessary because the information from my labs aligned with my changing symptoms.
Aside from eating a LOT of potato chips during this time (because they are allergen safe, cheap, easy to transport, and worked as a filler food when I was still hungry between meals)
- My eosinophil levels dropped to 0 with the first round of elimination.
- My levels spiked again with reintroduction of dairy and wheat
- My levels drastically reduced with the final elimination of wheat
- My acid reflux totally disappeared when I removed the 5 major allergens
- “Sticking” and minor food impaction episodes disappeared entirely
- I was still drinking coffee and felt ok(usually a major acid reflux culprit)
- I was still drinking cocktails 1-2 times a week and felt ok
- I discovered almost all replacement cheeses are terrible (but, they work for pizza cravings) Not truly a finding, but a very strong opinion 😀
The second to last scope: We reintroduced wheat and dairy and my eosinophil levels SPIKED again. So, for the next 8 weeks I removed dairy (dairy is the most often culprit)
The final scope: We discovered WHEAT (not the just the gluten) spiked the eosinophils and inflammation in my throat.
I’m back to a totally normal diet with the exception of gluten/wheat. I still have yet to try swallowing a normal sized Advil because my stricture has not been fully dilated to the average esophagus size (an 11mm instead of a 20mm). All in good time…
While having a bite or two of wheat occasionally won’t hurt me (as far as we know), it’s the prolonged effects that can lead to more narrowing and more dilations that I’m working to avoid.
Soapbox Moment: So, sorry, I will be asking for that GF bun or lettuce wrap because I’d prefer to pay a bit more in everyday food items than be put under anesthesia on a nearly annual basis. Because, the every other year esophagus stretch protocol feels like TOO MANY when others have found 100% success in changing their diet. So, fingers crossed this adjustment is effective for the long-term and we can space out any dilations by many years by altering my diet.
TLDR; If you have more than occasional dysphagia problems or chronic acid reflux I’d encourage you to do some investigation because this is not as uncommon as you’d think! Or, if you happen to just have chronic acid reflux problems maybe figure out a way to minimize your symptoms because I wouldn’t wish a narrowed esophagus on anyone. EVERYONE SHOULD BE ABLE TO EAT ALL THE CAKE THEY WANT!
(Also, this is incomplete, it’s only a peek into my experience. Talk to a doc, do your own research, find medication/ management tools that work for you and your body.)
Other interesting bits:
EOE may be linked to a missing protein in cells lining the esophagus