Wednesday, December 14, 2011

More News On The Celiac Front

On Monday we took Liam to see the gastroenterologist regarding his test results and symptoms.  I didn't expect for there to be much forward progress at this appointment but I was looking forward to talking things over with someone more versed in these issues.

I love the doctor we saw.  She was really, really wonderful and saw Liam as a whole person and not just a cluster of symptoms.

The upshot is that we're still on the fence about Celiac.

It comes down to this: Celiac is a microscopic diagnosis and the blood tests can be decent predictors but they're not definitive.  The only way to be definitive is to do an upper endoscopy and take some biopsy samples.  This is what the doctor recommended and what I expected to hear from her.

What I didn't expect was that she has her doubts about the blood work.  While his symptoms do fit a Celiac profile, there are some things that don't quite fit.  His abdominal pain, for one thing, is quite high - just under the sternum - and not lower down at all - especially now that we've increased the fiber in his diet and alleviated much of his issues with constipation.  For another, I think she was a little surprised that he's not having diarrhea problems.

Third, the blood panel they did on him tested for three values.  One was positive, two were negative.  According to the doctor, one of the ones that was negative is a better Celiac predictor than the one that was positive.  There's wiggle room here.

So, while she wants to do the scope to find out exactly what's happening and get the definitive yes/no on Celiac, she also prescribed Prilosec for him.  Given his history of infant reflux and the nature of his pain, she thought it was worth a try.  If it worked and gave him some relief that was a good thing.  If not - well, at least we tried.

We came home Monday night and gave him his first dose and he did fine with it.  Last night he had pasta for dinner.  He quickly ate the fairly generous portion I served him and then asked for more.  He hasn't asked for second helpings of anything in months.  So, I gave him the rest of what I had - which was about equivalent to his first helping.  He finished that, too.  He also ate all of his applesauce.  Then, he went to Tae Kwon-do and immediately upon arriving home said, "I'm hungry!"  Before bed he got his second dose of Prilosec.

This morning he ate breakfast with no problems, no dwaddling, no begging from me for him to finish.  As he was eating I said, "It seems like you've been hungrier since you started your new medicine.  Is it helping you feel better?"  He said, "Yeah, and my hunger is going up and up."

Could his weight loss have been due to not eating because of acid reflux?

Frankly, I feel really dumb not figuring this out for myself.  I have lost count of the number of times my kids have seen doctors because of some weird symptoms that turned out to be reflux and DUH! I know how to deal with that.  It's just that if one of my kids was going to have long term issues with this, I fully expected it to be Jamie because he was so much worse as an infant than Liam was.

This is not to say that we are out of the woods on Celiac yet, though.  It's still possible that he has it and it's possible that he has both the reflux AND the Celiac pulling a double whammy on him.  We won't know for sure until the endoscopy results come back.  His procedure has been scheduled for the week between Christmas and New Year's when he's off school.  I suspect we won't have the results back until after the first of the year.

Until then, if the kid wants to eat me out of house and home, I'll gladly allow it.


  1. I am really fascinated with the reflux possibility (sorry if that makes you feel like you're in a petri dish or something, heh) Especially if he wasn't eating because of the pain? As a baby, Audrey did the OPPOSITE- nursed/ate constantly, dr called it reflux eating. Funny how their behavior might change when they're older, if that's in fact what's going on. Either way, I hope you get good news- pulling for NO CELIAC! and something easily fixable with meds or a slight change in diet. Fingers crossed for you!

  2. Interestingly, Liam did the same as Audrey as a baby. Before we had him diagnosed, he would cluster nurse from 6 to 10 pm every night, every hour on the hour. It was exhausting. Apparently, babies 'think' that eating will wash the acid down but all that does is make MORE acid so they get worse. Older kids can make the connection that food makes them feel gross so they don't eat.

    Liam has often done things like take 3 bites of a meal and then say his tummy hurts and he doesn't want anymore - when 20 min previous he was complaining that he was starving to death. Because of his picky eating habits we've always attributed that to not wanting to eat what was set in front of him. It's bad to say that I thought my kid was lying to get out of eating but that's really what we thought. I feel bad that it seems at though he wasn't and I didn't believe him. What a crap Mom I am.