I scraped ~10,000 posts on this sub to see if my weirder EoE symptoms show up for other people too — top 30 below
Hi all — fellow EoE patient (diagnosed late 2025). I have a few symptoms I associate with my EoE that don't show up much in the clinical literature, and I kept wondering whether other people here experience them too. So I pulled ~10,000 posts from r/EosinophilicE, ran them through an LLM-based extraction pipeline, and clustered everything into ~60 canonical symptoms. The extractor wasn't given a checklist — it pulled whatever phrasing each author used ("food gets stuck," "throat feels tight," "something lodged") and grouped them based on what was found.
Top 30 symptoms across 4,361 symptomatic posts (2,811 distinct authors):
| canonical | % of authors w/ symtomatic post | example_phrases |
|---|---|---|
| dysphagia | 41.3% | difficulty swallowing; dysphagia; trouble swallowing |
| food impaction | 37.1% | food impaction; food getting stuck; food getting stuck in throat |
| acid reflux / heartburn | 22.9% | heartburn; acid reflux; reflux |
| throat tightness | 17.6% | throat tightness; chest tightness; throat tightening |
| vomiting | 15.9% | vomiting; vomiting food; throwing up |
| chest pain | 15.7% | chest pain; chest pains; chest discomfort |
| stomach pain | 13.3% | stomach pain; abdominal pain; stomach aches |
| choking | 12.1% | choking on food; choking; choking episodes |
| difficulty eating | 10.7% | difficulty eating; unable to eat solid food; unable to eat |
| weight loss | 9.9% | weight loss; significant weight loss; underweight |
| sore throat | 9.6% | sore throat; throat pain; throat irritation |
| nausea | 9.1% | nausea; chronic nausea; nausea after eating |
| globus sensation | 8.7% | globus sensation; lump in throat; globus |
| regurgitation | 8.5% | regurgitation; regurgitating; regurgitating food |
| burping | 8.0% | burping; belching; constant burping |
| shortness of breath | 7.6% | shortness of breath; difficulty breathing; trouble breathing |
| pain (general) | 6.7% | pain; severe pain; constant pain |
| fatigue | 6.4% | fatigue; exhaustion; extreme fatigue |
| flare-up | 6.4% | flare ups; flare up; bad flare up |
| esophageal pain | 6.0% | esophageal pain; esophagus pain; pain in esophagus |
| mucus/phlegm | 5.5% | mucus in throat; phlegm; excess mucus |
| coughing | 5.4% | coughing; dry cough; cough |
| esophageal inflammation/swelling | 5.3% | swollen esophagus; esophageal inflammation; swelling |
| burning sensation | 4.6% | throat burning; burning; burning sensation |
| itching | 4.2% | itchy throat; hives; tongue tingling |
| esophageal spasms | 4.2% | esophageal spasms; throat spasms; esophageal spasm |
| bloating | 4.1% | bloating; early satiety; bloated |
| pill getting stuck | 3.7% | pills getting stuck; pills getting stuck in throat; pill getting stuck in throat |
| diarrhea | 3.7% | diarrhea; blood in stool; diarrhoea |
| throat clearing | 3.3% | throat clearing; post nasal drip; constant throat clearing |
A few caveats worth being upfront about:
- The mapping from raw phrases to canonical symptom groups involves judgment calls. Whether "throat tightness" and "chest tightness" belong together, whether "heartburn" lives with "acid reflux" or with "burning sensation" — none of these are obvious. The full mapping is in the repo and is hand-editable; I'd genuinely welcome pushback on it.
- Reddit posts skew toward people having a hard time. Someone whose EoE is well-controlled doesn't post much. So this isn't a prevalence estimate — it's a picture of what gets talked about here.
- One author can post many times. The full CSV reports both per-post and per-author counts so you can see how much that matters. (Spoiler: it doesn't change the ranking much.)
Honestly, my biggest takeaway from doing this was just personal — most of the symptoms I thought were unusual show up plenty in other people's posts. Code, full per-symptom CSV with example phrases, and methodology: github.com/cjensen506/reddit-eoe