Here's my random meme I've made to cope with having to take my stupid meds. Tbh tho it genuinely has helped me to think of it this way.

Tiktok: @philhatesgluten

just met someone else with eoe irl for the first time

it’s a strange sense of understanding with each other

i love all of you with rare diseases out there, we have each other <33

my tissue is scarring and becoming unusable as we speak, i want to kill myself

i want to live despite my immune system's attempt to kill me

my immune system is trying its best to protect me despite being sorely misguided. it has been traumatized by the toxins that living in the 21st century has put into my body and is reacting the only way it knows how. i have empathy for it and often feel the same visceral, overprotective reactions in reaction to violence and poison directed at those whom i love. i understand it. so i will work with it even if that means sacrifice, and i will live.

Another day, another doctor’s appt. Today I had a fasting blood test and see my GP to discuss how my pots and get a referral to a new allergist. Later have an appt with GI to go over what my EoE diagnosis means long term.

Here's the study if anyone is interested:

Dellon ES, Gonsalves N, Abonia JP, et al. International Consensus Recommendations for Eosinophilic Gastrointestinal Disease Nomenclature. Clin Gastroenterol Hepatol. 2022;20(11):2474-2484.e3. doi:10.1016/j.cgh.2022.02.017

Hey I’ve just been diagnosed with two different autoimmune diseases, hypothyroidism and e.o.e., so now on top of my severe egg allergy I have to cut out a ton of other foods. So if anyone has any recipes or ideas for quick snacks I’d appreciate it. I’m down to really only eating ground beef, chicken, veggies, and fruit.

Hehehe just had an upper endoscopy and dilation done today. Here's the commemorative picture I made (aka something I made before it and vowed to post if I survived).

The recalled Cream Cheese Stuffed Plain Mini Bagels with UPC 89903900283 and Cream Cheese Stuffed Everything Mini Bagels with UPC 89903900286 are packaged in cardboard cartons labeled with ‘Feel Good Foods’ on the front panel and the bagel flavor listed below. The recall includes all Best By dates, ranging from 5/29/24 to 9/17/25 which is on the bottom of carton. Please see photos of carton labeling as product may contain two styles of labeling due to package re-design.

only if you’re comfy ofc — but would you explain what it was like to get diagnosed with eoe? I have a different eos disorder, but until i asked them to test me for my illness, my doctors consistently ignored my high eos counts and blamed it on allergies… lowkey just wanna know if all doctors are that shitty or if it’s just mine lol

i don’t mind at all !!!

we actually accidentally found my eoe

i’d been tested for allergies multiple times bc i get allergy-like symptoms (don’t know why exactly bc no mcas or allergy presentations other than eoe) but every test has always been negative and idk if we ever looked at my eosinophils in my blood

i was experiencing general gi symptoms that we assumed were gastroparesis but my doctor wanted me to have an upper endoscopy and colonoscopy to rule out anything else !

during that endoscopy/colonoscopy, everything was fine except my doc found the eosinophils and biopsied to confirm. he immediately gave me the diagnosis day of.

my family and i had never heard of eoe at all and my doctor was not looking for it so it came as a surprise but it was a good catch as i’ve most likely had this for years (if not my whole life) and now we can treat it before i get permanent strictures in my throat !

AYO? DUPIXENT???

What's up my good EoE folks?! I'm trying to get on Dupixent right now (insurance is holding it up of course) and I'm wondering if any of you wonderful folks have tried it for EoE or have any experience with it at all?

keeping your chin high while working to save houses and in the face of a chronic fatal disease is hard work. emily and I both are facing it. its the biggest hardest thing we've ever done. the future of the manor is very much at stake, lovely readers, but like I have always said. family united is strong and home is where family is. doesnt mean we dont fight the good fight and one thing we all are is good fighters. im going to live. so is the manor. im so confident im planting a garden.

why? how? because i must always stand my anxiety in the wind and call it the liar it is. confidence is my weapon. the golden years are going to be our hardest but they're going to find that together we are made of hardened steel.

Have you struggled with eosinophilic esophagitis?

The fear of not having a direct allergic reaction?

The fear of feeling your throat closing? And being unable to swallow?

The fear of having something stuck in your esophagus?

I first got it in 2021, and I still don’t know what is the cause, not closer than I was two years ago. I tried PPIs, Flovent, Jorveza and the only one I can’t is Dupixent because when I took it for eczema back in 2019 it gave me the worst eye side effects that my doctor told me to stop it completely. Funny thing, it’s the only medicine that could potentially help with both of my autoimmune diseases!

Six food elimination helped, but I can’t live a life without these 6 major foods, I really hope it’s soy and not dairy. I’m starting my first single elimination with Dairy and testing soon.

If you live in Europe, Africa or the Middle East, and have EoE please tell me what is your allergen if you found it? I suspect wheat and dairy are majority only in the US.

I want to talk about chronic illness for a second. I have a condition called EoE, or eosinophilic esophagitis. It causes various symptoms including stomach pain, acid reflux, heartburn, nausea, vomiting, inflammation of the esophagus, food impactions, and more.

I was diagnosed at five years old. When I was in kindergarten I missed over forty days of school, the vast majority of those absences were due to either having to go in for treatments/tests for my condition or experiencing severe enough symptoms of my conditions that I was unable to attend school. This pattern continued for several years. For the entirety of elementary school, I missed at least twenty days of school every single year.

I eventually figured out how to properly manage my condition through diet changes and medication. I still often experience symptoms due to cross contamination, being misinformed about the ingredients of a dish, or me being careless with my diet, and I am still unable to eat various foods.

Despite this, it could’ve been a lot worse. If my mother hadn’t been so proactive about my healthcare and fought back against doctors saying that I was perfectly fine from a young age, I could have gotten to a point where I choked to death, developed a food impaction and required surgery to remove it, or had my esophagus swell to the point where I required a feeding tube.

And guess what? Because of her diligence and concern for my health, my mother has been, at multiple instances, labeled as crazy or dangerous to me in some way. For trying to get me treated for a condition that I have. Which I have been diagnosed with by medical professionals and which is easily verified. We have had CPS called on us because I was being “starved” (I was put on a hypoallergenic diet which consisted mainly of nutritional drinks, which, while nasty, were, as the name suggests, providing me with adequate nutrients and I was carefully monitored by doctors during this period to make sure that I was doing fine).

I absolutely hate the American healthcare system as it is today. Why do doctors think it’s okay to dismiss patients concerns out of hand like this? Why is it so difficult to obtain a diagnosis or treatment for anything less common than the flu? Why do we let thousands of people, if not more, slip through the cracks of our shoddy medical system every year and just let their health continue to worsen when they could be receiving treatment for their conditions? Why are doctors so reluctant to diagnose and so eager to label people as either crazy or drug-seeking for thinking they (or their child) are sick?

Not to even mention the cost, the months to years long wait times for an appointment if you want to see a specialist, and the fact that a lot of specialties will have, if you’re lucky, a small a handful of doctors in that field in your state, so you are probably driving multiple hours to go to them.

I still can’t get the new treatment for my condition which would improve my quality of life and greatly lessen my symptoms because I can’t get an appointment at the one clinic in my state that’s able to prescribe it. Which is four hours away and has been booked up for the last year and a half.

Sorry for the rant, I’m just pissed.