Thursday, February 14, 2013

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.


  1. Lots of thoughts, want to talk to you in person. Right now I think the best thing is trusting your instincts, and not being bothered by the doc blowingnthemnoff. That's all many of them know how to do. Also, meanwhile, check out this and maybe you might be interested in my report after I visit this woman, probably next week, regarding the the possibility that food sensitivities might be at the root of my my RA.

    Love you.


  2. Hi there! I get a google alert email for blogs and news about Eosinophilic Esophagitis and this popped up there.

    My three year old son has EE. I think it's a good thing that your doctor wants to do the pH probe, it shows that he has a fairly good understanding of the disease. Another option would be to go on a high dose of a PPI for at least six weeks and then repeat the endoscopy (without making any other changes). Kids all present different, so yes vomiting and difficulty swallowing are common, but many kids have different symptoms or sometimes not at all. Stomach pain is very common, despite the fact that the eosinophils are not in the stomach. Many kids also have no known IgE allergies.

    An elimination diet is a very valid treatment option. Steroids are not necessarily a given, and are just an alternative to the dietary management (or sometimes a supplement to if dietary doesn't seem to work on its own, it can allow kids to eat more foods than they otherwise would be able to). My son is dietary only - no steroids. Many, many kids will have a "clear" scope (one that is clear of eosinophils) after doing an elimination diet of just the top 6 allergens.

    You are correct in that it is important to do just one thing at a time. The ruling out of reflux is important, as treatment will be very different if reflux is the cause. Research what kind of treatment you think would work for you (it seems like dietary is what you want) and if your doctor won't go for that, find a new doctor.

    The feeding tube only comes into the picture when a child does not have enough foods that are considered "safe" and needs a supplement. The supplement is a special formula that doesn't taste very good so the feeding tube kids have a hard time drinking as much as they need, thus there is a need for the feeding tube. My son needs some formula supplementation, but he just drinks it. If you are interested in more about my son, I have a blog that is solely about him and his esophagus, the link should be there if you click on my name.

  3. I think you are absolutely on the right track. Trust in what your feeling. Definitely try other things prior to just believing a hunch. She could grow out of this at some point, maybe her body is rejecting something in her diet (I assume they ruled out celiac disease since they took a biopsy), maybe it is her nerves/stress for some never know. Keep a diary of food/acitivites, etc... and track stomach episodes. Love you all and can't wait to hear an update.

  4. I think you are absolutely on the right track. Trust in what your feeling. Definitely try other things prior to just believing a hunch. She could grow out of this at some point, maybe her body is rejecting something in her diet (I assume they ruled out celiac disease since they took a biopsy), maybe it is her nerves/stress for some never know. Keep a diary of food/acitivites, etc... and track stomach episodes. Love you all and can't wait to hear an update.

  5. Alison, thanks so much for posting! I read your blog and found it very interesting. I think that our challenge is that Nolie isn't presenting with the symptoms your son has...she's never had trouble swallowing, and doesn't complain of esophageal pain. We've cut out the acidic fruits and the milk products, and she's complaining much less of tummy aches, and also sleeping through the night regularly for the first time in her life! This feels amazing.

    So the trouble now is, do we just continue on this path for a while and see if she continues to feel good, or do we enter into the EE treadmill with food restrictions, endoscopies, etc.? My inclination is to go the low intervention route. But we'll just have to see.

  6. Having a son diagnosed at 11 months old with EE only due to having an endoscopy because of a failure to thrive diagnosis- I truly do understand your hesitation to continue down that path. My son was in remission at 15 months and now at 6.5 years old has full active disease. We have done food trials and just yesterday was put on the Top 6 elimination diet. He doesn't complain much about pain, or vomit, or have trouble swallowing but like I said he has full active disease. He did have the pH impedence probe in December which was negative.
    He is a happy go lucky boy yet he has this disease that isn't going away just by itself. I would ask though if you really have been strict on the no dairy that you see if the doctors will do another endoscopy to see if that has reduced the number of eosinophils...
    I also have EE and have had limited symptoms for 25+ years but nothing was ever done to treat mine- I now have to have endoscopies with dilation to help me with swallowing foods. I don't wish that part on anyone...

  7. I'm so sorry to hear about what has happened with you and your son, and thank you for sharing your story with me.

    I haven't posted a full update yet, but so far, I believe we probably had a misdiagnosis of EE... Nolie was never fully symptomatic in the way you and your son were, and we've had tremendous results by doing NAET treatment with an acupuncturist who specializes in working with children. Nolie is able to eat most foods now, only has occasional diarrhea and tummy aches, and has resolved most of the behavior issues.

    But she never really could have been described as failing to thrive; almost never threw up; and responded quickly to this alternative treatment. It's possible that if we hadn't switched course we could be in hospital treatments now, or it's possible that her symptoms were on their way to resolving themselves anyway, or that they could some day return.

    Right now I'm grateful every day for her wellness, and my heart goes out to you.