Eosinophilic Esophagitis

That's a mouthful, huh?  Eosinophilic Esophagitis, or EE for short.  The biopsy says that's what Nolie has.  The doctor says that's what Nolie has.  I guess eosinophils are little white blood cells that flare up as allergic reactions, most likely in response to foods.

It's so hard to parse out all of the information and to figure things out in my head.

Here's what the doctor said:

Nolie's stomach and colon look normal.

The parasite is gone.

Her Immunoglobulin-A level, which was low before, is back to normal now.

We are still waiting on the results of the enzyme test, which will tell us how she's doing with lactose and carb digestion.

The biopsy shows the presence of these eosinophils in the esophagus, but they wouldn't explain Nolie's tummy pain or diarrhea.  He thinks maybe the parasite caused that, and then the strong antibiotics just had some bad side effects for a while.  We're noticing definite improvement in the frequency and intensity of her tummy aches, and we're not seeing frequent diarrhea at the moment, either.

But I should also say that I stopped letting her eat citrus last week, on a hunch.  She was getting ready for bath, and I offered to put a few drops of essential oils in her bath.  The scent she chose was orange. She immediately developed big red welts on her body from just a little bit of the oil in her bath and had to get out.  Citrus, I wondered.  No more citrus, we agreed.  So maybe not eating oranges every day is also making a positive difference.

The eosinophils, according to the doc, could also be caused by acid reflux (again, good to cut out those acidic oranges, if this is the case).  He wants to do another test on her where he shoots a tube--a pH probe--down her nose and into her throat over night to test for acid levels.  Small tube, no anesthetic, she'd still be able to eat.  To rule out GERD.

But I don't want to do it.  More on that in a minute.

His hunch (and I'm growing increasingly sure they're mostly hunches) is that it's not acid reflux, it's EE.  The trick is that EE usually presents in kids as them not being able to swallow and vomiting a lot.  We're not seeing that at all.  They have tons of food allergies and have trouble putting on weight.  They often end up on feeding tubes.  They often have eczema, which Nolie does have.  But otherwise, this doesn't seem to describe our girl.  And we'd have to join a clinic and have all sorts of other interventions, including putting her on steroids.

The cure, in my opinion, is beginning to sound worse than the disease.

My inclination, frankly, is to 1) declare oranges and tomatoes off-limits, reducing the amount of highly acidic foods she's taking in, 2) try eliminating dairy from her diet, since that's often a culprit in GERD and for eczema, and 3) try some alternative therapies, like energy healing, muscle testing, and relaxation techniques, in the case that things are being aggravated by stress.

More premature, anecdoctal evidence:  I've pushed yogurt on Nolie in the morning for a long time, thinking it would give her some protein.  She's always resisted.  Maybe she knew the lactose would make her sick.  I don't know.

Nolie also complains of knee pain, so I'd like to do some reading on inflammation and diet.

We may experiment with gluten down the road, too.  But one thing at a time...I think the worst thing would be to go completely crazy and try everything under the sun all at once.  I'm heartened that we've already seen a little improvement this week just from the citrus and dairy reduction, and I'll be interested to see what the enzyme tests report.

The doctor was not interested in any of my questions to this effect.  If I didn't want to do it his way, good luck, was pretty much the attitude.  Which makes me not so interested in him at the moment.

There's a risk here, of course, and that's that she could develop a much more full-blown case of EE, this new disease that affects so many now (according to the doc's website) and then we'll be sorry we didn't submit to the medical circus now.

I guess I'm willing to take that bet.

Totally open to your feedback, anecdotes, stories, impressions, and intuitions.