Sharing My Family’s Experience With EE – Diagnosis

This is part of a series of blog posts sharing my family’s experience with eosinophilic esophagitis in response to reader questions. Check out prior articles in the series here, and always consult your physician.

Diagnosis of eosinophilic esophagitis (EE) is frustrating and complex. I think this is largely because you can’t see the problem. If you get a rash on your skin, you can see it. With EE the symptoms can be largely hidden, and mimic many other problems.

My son’s problems really hit a peak when he was in elementary school. Around third grade, it was quite common for me to get a call from the school nurse in early afternoon (after lunch) saying that my son had thrown up – I got these calls sometimes 2-3 times a week. But he always said he was fine and he never had a fever. In any other child a parent may have suspected that he was trying to avoid class, but not here – he hated missing school and always wanted to go back to class.

At home, we would also see problems around mealtime. Often he would complain of pain in his chest, and he would sometimes be hovering over the sink expecting to throw up. Important note – usually if he threw up he felt better, but could never eat after that.

We visited doctors. At that point our medical insurance required a referral to a specialist so it was always a visit to the pediatrician then to the specialist. It was when we saw a pediatric gastro-intestinal specialist that we made some break-throughs, but even then it was slow going.

Everything we tried seemed to work for a while. He was diagnosed with acid reflux, and he started taking the purple pills. That really seemed to help at first. Knowing what I know now, I understand that the medication (which reduces the acid in the stomach) was really masking the problem. He no longer had as much pain in his esophagus because the acid wasn’t there to irritate his inflamed esophagus, but he still had difficulty eating.

It was clear that food was causing the problem, but even though food allergies were quite common in my family, I didn’t perceive this as an allergy. Nevertheless, I did suspect that milk was a problem. He stopped having milk with school lunches (and that did minimize the calls from the school nurse). So we had him tested to see if he was lactose intolerant. After a grueling four-hour test where he drank an awful-tasting solution of milk sugar and had to periodically breathe into a tube, we discovered he was indeed lactose intolerant. How do I know the stuff tastes awful? Because I did the test too – and discovered that I am also lactose intolerant.

So we eliminated milk from our diets.

Meanwhile he was still growing. He started playing sports and hit that age when boys eat a lot. And he was still miserable.

During the summer he turned ten, he was eating peanuts by the handful. For those who missed episode one of this series I will note again that my son is allergic to peanuts. (I have a suspicion that we crave what we are allergic to, but that is just a suspicion and not scientifically proven.) He developed a painful itchy rash on the palms of his hands.

At the same time, we were still trying to diagnose the gastro-intestinal problem. Next up was a barium swallow, where the patient swallows different foods while x-rays are taken to see if food gets stuck. Unfortunately we didn’t know which foods caused the problem, so he swallowed things like lettuce (because he complained that lettuce would get stuck in his throat), and the test showed no problems.

Next was his first endoscopy. Readers have asked whether we did an endoscopy, and the answer is yes – this is where we really started to make some progress. After his first endoscopy his doctor said that she had never seen such an inflamed esophagus. At this point my son was off milk completely. We stopped the Prevacid for acid reflux, and started looking for reasons for the inflammation. During the endoscopy the GI had taken some biopsies.

As luck would have it, my son was also visiting a dermatologist for the rash on his hands around the same time. The dermatologist was baffled – the rash was something he couldn’t identify, so he also took a biopsy. If these two biopsies had not occurred around the same time, we may not have made as much progress in the diagnosis. A tech in the lab actually noticed that the eosinophilc (cells) from his endoscopy biopsy and from his palm biopsy were identical. This is when we started thinking it was an allergy.

Next up in this series: When did we know for sure it was EE?

If you have a question on this topic you would like me to address please send me an e-mail or leave a comment here.