Sue's Blog

Difficulty swallowing - Eosinophilic oesophagitis (EoE)

BLOGEoE

Some food intolerant people have difficulty swallowing (dysphagia) and often blame the texture of foods. People also report oesophageal spasm which hospitals may blame on “vagus nerve issues” and treat with antispasmodic drugs.

But a more serious allergic condition is a diagnosis of “asthma of the oesophagus” or eosinophilic oesophagitis (EoE).

Dysphagia may respond to diet:

"For several years I had trouble swallowing food. Nothing is anatomically wrong, so my doctors all assumed it was an anxiety symptom, even though I didn't feel anxious about anything other than having difficulty swallowing food ... I started the failsafe diet in August last year on the advice of my dietician ... now I have no trouble swallowing food. It wasn't a sudden change, but at some point it just started gradually improving and now it's completely normal" - Tammie

But given that that the Network is concerned with food intolerance, not food allergy, it is not surprising that the RPAH food intolerance protocol is not always effective for EoE. What is important, if you have these symptoms, is to find a qualified team who regularly treat EoE, so they can distinguish dysphagia from EoE as they understand that untreated EoE can lead to irreversible scarring of the food pipe. See the first five reports below. There are two RPAH dietitians on our list under NSW.

The Network database holds a few EoE reports, while the Sue Dengate facebook group has many more. Here are some diagnosed EoE reports from the facebook group:

Reader reports

“RPAH work with this looking at top allergens as well as food chemicals- they are the only ones who look at both. Mostly it is looking at taking out allergens after a baseline scope looking for improvement then scopes after allergens reintroduced one by one. Usually a team management approach with Medical Allergist working with Dietitian” – from a dietitia

“At the RPAH Allergy Unit we have seen hundreds of patients with EoE who have had success on the RPAH elimination diet & challenge protocol. This is done under the supervision of an immunologist and dietitian, with close monitoring” – from a dietitian

“My 11 yr old has this and I highly recommend the RPAH elimination diet in consultation with a dietitian, a GP with a chronic health plan, a GI, an immunologist and even a psychologist. This one takes a team to figure out, patience and the support of groups like this” – Cassie

“My son was diagnosed over 7 years ago. The AUSEE website and support groups https://www.ausee.org/ have been a lifesaver for us over the years. For some people there's an easy solution, for others like our son, it's highly complex. We have tried every kind of therapy, diet modification etc. Getting a qualified team who regularly treat EOE and know what they're talking about is the first challenge. The second is trying to stay sane when family and friends don't get what you're dealing with because it's not visible or simple to understand” – Emma

“My 12 year old son was diagnosed about 5 years ago. Diagnosis came about due to failure to grow, reflux, asthma & teeth decay (caused by reflux). Thankfully we have been working with children’s hospital in Brisbane for all of that time and a local dietician to get the EoE under control. He has been having scopes every few months but due to great improvements in the biopsies after removing fish & dairy from his diet & adding in a steroid spray to line/repair the oesophagus & omeprazole he has been virtually symptom free for a year” – Fiona

“Unfortunately the diet didn't help my EoE, the pulmicort with baby pears helped”
– Anne

“Our 12 year son old was diagnosed with this ... initially put on amine elimination only, but has been on full RPAH elimination diet plus the top 6 allergens for EOE ... but his symptoms have steadily increased week by week rather than improve. He experiences constant nausea plus regular sharp stabbing pains” – Arrabella

“My husband has it. After 20 years of suffering, we discovered egg to be his cause ... providing he now avoids egg it’s relatively good” - Joy

“My husband has EoE and seems like dairy is his main trigger. We use oat milk safely” – Sue

“My son is 8 diagnosed 3 years ago ... my biggest advice would be that you can manage this through diet” – Sarah

“My son has EoE and allergic to 30 foods. When we found out these foods where making it worse we eliminated the 30 foods and he has been symptom free” – Wendy

“Yep, diagnosed in February. I first did the elimination of the top 6/8 common allergens. But still showed active disease on the next scope. Now I’m doing the RPAH strict low chemical diet in addition to avoiding the top 6/8. It’s only in doing the low chemical that I’m finding an improvement in symptoms” – Lyn

More information

Asthma of the oesophagus: the alarming rise of a rare inflammatory condition https://www.theguardian.com/science/2024/feb/10/asthma-of-the-oesophagus-the-alarming-rise-of-a-rare-inflammatory-condition

Factsheet Allergy or intolerance