Living with EOE and IBS: My Journey of Discovering the Link, Embracing Change, and Building Health and Resilience

1. Growing Up with Asthma and Early Health Influences

I’ve lived with asthma & daily medication for it my entire life (I'm a 1973 vintage). As a child, I remember regular blood tests, maybe every six months, to check our health levels and see if we needed medication adjustments. My older sister had asthma too, and our mum, when she could afford it, would reward us for our ‘braveness’ with a scented rubbers shaped like lipsticks or clocks—too amazing to use, so we collected them instead!

Note: Asthma is a chronic respiratory condition that inflames and narrows the airways, making breathing difficult. (Learn more on WebMD here)

Growing up, Mum was what you’d call a real health enthusiast. She was strict about what we put in our bodies, making sure we ate fresh, whole foods and kept processed junk to a minimum. There was no regular salt or caffeine in the house, and if we were hungry, she’d tell us to grab an apple from the fridge or pick an orange from the tree. She taught us early on to be mindful about what we put in our mouths, always encouraging us to eat/drink well for the sake of our bodies. Mum gave up dairy milk many years ago for soy. I gave up dairy start 2023, 'Oat Milky' if the non dairy 'milk' or my choice. (It has that creamy taste!)

She even had her own ways to help us cope with discomfort. During blood tests, she’d have us count the holes in the industrial-style ceiling tiles as a distraction. Neither of us enjoyed it, but as the younger sibling and middle child, I always pretended to be brave. Fifty years later, I’m still ‘being brave,’ though now I lie down (So not to fall down) during blood tests because of my low blood pressure!

These days, my asthma is well-managed with a daily preventer and a Ventolin inhaler for emergencies, blood tests are rare. I’ve had a few bouts of pneumonia and some close calls over the years, but I credit modern medicine for keeping me alive.

Note: IBS, or Irritable Bowel Syndrome, is a gastrointestinal disorder that causes symptoms like abdominal pain, bloating, and irregular bowel movements. (Find out more on WebMD here)

2. The Onset of IBS and Early Triggers

In my 20s, I started experiencing severe IBS attacks. At first, I blamed various foods—bacon, capsicum, even sugar, which I crave due to ADHD (Diagnosed only in 2023) and binge-eating tendencies. By my mid 30s, I realised lactose was a major trigger. Avoiding it helped, though I believed I could handle it if it was cooked in foods.

My IBS is the mixed type, which is a unique struggle. Constipation forms a blockage, gas builds up, and the result is excruciating pain that lasts anywhere from 20 to 60 minutes, sometimes causing vomiting or near-fainting. This experience is disruptive, often happening at the most inconvenient times. Finding some trigger foods helped, but my gut issues continued.

Note: EOE stands for Eosinophilic Esophagitis, a chronic allergic condition affecting the esophagus. (WEB MD Explain well- Click here)

3. Discovering EOE: The Missing Piece

Fast forward to 2021. For 18 months, I’d been dealing with lingering cold symptoms, low-grade fevers, and a husky voice. (This I quite enjoyed!). My sinus scans showed nothing, and I’d already had sinus surgery. Even reflux meds didn’t help.

During a regular colonoscopy (my mum passed away from cancer in 2019), in 2022 I had my first endoscopy, which revealed I had EOE—Eosinophilic Esophagitis, something I’d never heard of. Finally, I had an answer! EOE, a condition first discovered in the 90s, is common in people with allergies.

Turns out, all those times I choked on food weren’t because I’d taken a large bite but because my esophagus was narrowing. EOE causes this, and it can lead to emergency room visits when food gets stuck—though, thankfully, it doesn’t block breathing.

4. Adjusting My Diet and Lifestyle for EOE

EOE is like asthma for the esophagus—a delayed reaction to food. Treatment involves an elimination diet where you avoid certain foods like wheat, nuts, eggs, dairy, soy, and fish, then reintroduce them one at a time to pinpoint triggers. Two years later, I’m still avoiding wheat, dairy, and eggs, and I steer clear of nuts and soy whenever possible, while eating fish only rarely.

It’s challenging but doable. Working from home makes it manageable, and I’ve found substitutions for most things. I miss bread but occasionally indulge in gluten & soy free, vegan, specialty loaves, which aren’t quite the same but satisfy the craving. Dining out is tricky, but I can usually find options marked ‘gluten-free’ and ‘vegan,’ adding meat when needed.

While in Bali recently, I found that restaurants were more accommodating than those in Australia—a nice discovery. Usually, I go through tissues while traveling, but this time, I only needed one! The thought of getting sick on holiday kept me focused on my diet.

5. Realizing the Health Benefits of My New Diet

After my 2022 trip to Bali, I installed a toilet bidet at home. After my 2024 trip, I joked to my son that I didn’t need the bidet anymore—my diet had turned my gut health around. Now, I only have a few IBS attacks a year, whereas I used to experience several each week.

I’ve noticed improvements in my asthma and other health issues. I’m using fewer tissues, I don’t choke on food, I sleep better, I spent less time in the toilet, and my sinuses have improved. Do I miss certain foods? Yes, but my mum always taught me that what we eat matters, so I’ve learned to be disciplined. I already live with fibromyalgia, scoliosis pain, & neck & back pain from old injuries, so I’m all for reducing pain & discomfort wherever I can. Plus, I’m not wasting my life in the bathroom anymore & using less loo paper & water! (An environmental win!)

I even found an allergy-friendly chocolate bar, (I never thought I could 'give up' chocolate!) and keeping weight down is easier when there are fewer treats I can eat. Reading allergy guidelines has become a new (unintentional) hobby, and I’ve worked out that McDonald’s hash browns and Hungry Jack’s chips are safe for me. (A great back up plan when out & about!)

6. Reflections on Health, Family, and Moving Forward

Not everyone is willing to adjust their diet, and research is underway for a weekly injection that could make food restrictions unnecessary. At one point, I thought I’d take it just to enjoy regular food again. But now, I realise I prefer to tweak my diet to feel better. If the injection becomes available, I’d probably save it for the occasional treat.

This journey has helped me reconnect with the values my mum instilled in me. I’m grateful for the lessons she taught about nutrition and discipline, and I feel equipped to make choices that support my health long-term.

7. Wrap-Up: Practical Advice for Living with EOE and IBS

If you’re navigating EOE, IBS, (Or chronic colds, & reflux that won't budge = EOE), or similar health challenges, know you’re not alone. I’m more than happy to offer practical advice, as I understand the journey of adjusting your diet while balancing other conditions.

The effort has been worth it. Eating right has brought my lungs, voice box, throat, stomach, and sinuses to their healthiest state. While I may miss certain foods, I’ve grown to appreciate whole ingredients—the kind that fill the fridge and pantry and make my teen say, "There’s nothing to eat."

Living with EOE and IBS doesn’t mean missing out; it’s about nourishing your body in ways that help you feel your best. -Ang x