Thursday, June 17, 2010

Sharing My Family’s Experience with EE

Recently I have received a number of e-mails from readers wanting to know more about my family’s journey with eosinophilic esophagitis (EE). Since the questions are usually along the same lines, and since I suspect there are lots more people out there who could benefit from this information, I decided to address some of the questions in a general way via a series of blog posts. This is the first in that series. I’ll continue to post weekly on Thursdays on this topic until I have exhausted the questions.

First, I want to tell you the end of our story – because I want anyone reading this to know that once you figure out what the problem is – and what foods to avoid – things get much better.

My son is allergic to milk, wheat, soy protein, egg whites and peanuts. He is now nineteen years old, 6’1” tall and weighs about 175 pounds. He has a higher than typical calorie intake because he is an athlete. And he lives (and eats successfully) on a college campus.

What kind of reaction does he have? The foods that trigger his EE cause his esophagus to become inflamed. His throat swells up, his esophagus closes up, food gets stuck, and he is miserable. It’s very much like a very bad rash in the esophagus. But I’ll cover more on symptoms in a later post.

You should be aware that there are extreme cases of EE where the patient can’t tolerate any protein at all and must be tube-fed. But in many cases, the treatment is just like the treatment for traditional food allergies – figure out what you are allergic to and avoid it.

I should also point out that I am not a doctor. Please consult your doctor on your personal situation. This story is about my family’s personal journal and experience.

First up – Did my son always have EE?

Yes. I am certain that he did, although we didn’t have a diagnosis until he was about ten years old. Knowing what I know now, it’s easy to look back and see that this problem started the day he was born.

I used to describe my son as the blurpiest baby you have ever seen. He would eat, spit up (a lot), scream, and sleep. He was a very cranky baby. He was so cranky for the first six months of his life that I was afraid to leave him with a sitter.

The diagnosis? Extreme colic.

Noone thought of food allergies, and EE wasn’t even on the radar scope.

I tried every formula available on the market. Most seemed to work for a few days, and then we’d be right back in the same cycle. But he was gaining weight and he never failed to thrive. In fact, for the first few years of his life he measured in the 75th percentile in weight and height, and later he jumped to the 90th+ percentile.

In retrospect, I can see that the milk was causing the problem. And because he was also allergic to soy, soy formulas (very popular in the 90’s) didn’t work either.

As a toddler things got much better. Again, as I look back at what he was eating it makes sense. As soon as I could I started feeding him solid foods (baby veggies and fruits) and juice. Even oatmeal I prepared with juice instead of milk. He rarely had milk. Instinct? Maybe.

So, yes, I am certain that my son had EE from the very beginning. Next week I will answer the question: How was my son diagnosed?

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.


clmichel said...

Thank you for sharing your experiences with us. I am another EE mom in search of any helpful information and your blog is great!

Colette said...

clmichel, Welcome! I'm so glad you found me!

missybier12 said...

I have EE and I'm very glad you have this site! There is little information about EE and it is so hard to find people who understand since you seem to suffer silently since people can't see anything wrong. Glad to hear your son is doing well!

Lori said...

Hi fellow blogger! I can relate to your story. My daughter was diagnosed with "reflux" at 12 months and multiple food allergies at 18 months with a suspicion of EE. We still don't have a definitive EE diagnosis but the treatment is the same and that is to avoid the allergens so for us EE or not we are living allergen free.
Check mine out at:

Colette said...

Lori, it's great to meet you. Good luck as you go through the diagnosis process.