Gut Struggles and Victories

About a month ago, we found out that William doesn’t have Celiac. I think I wrote he was being tested, but in case I didn’t, Will was tested for Celiac several weeks ago.

Well, he asterisk doesn’t have Celiac because if he also has a different issue he could have Celiac, but we’re feeling pretty confident that the test result, sans-asterisk, is correct. But, we still just don’t know what’s up with his gut. He swings back and forth between constipation and loose stools, he’s got a giant bloated belly and just doesn’t grow well. And his iron is like scary low. It’s less than half of the bottom level of normal. And it’s dropping. Despite a surprisingly iron rich diet.

Despite all of this, we had a fairly major William gut milestone this week. We have finally weaned him off all his reflux medication. We’ve tried twice earlier this year with epic failures both times, but this time, he’s off and without any noticeable issues.

Will was started on his first reflux med when he was 4 months old and was diagnosed with severe GERD with Sandifer variant. We added a second medication within a few weeks when the first med didn’t cut it and even then, it was almost constantly a struggle to keep everything controlled. It was a struggle to eat, a struggle to gain weight. A struggle to grow. And we dropped one medication almost a year ago, but this second one, it has been a struggle unto itself.

And now he’s off of it. Hopefully this will also improve his iron absorption since it can be known to reduce iron absorption, but I’m not holding my breath (dosage and timing seems to make it unlikely to be the cause).

I still feel like we are somehow missing the big picture for Will. It’s not food allergies (it’s also not FPIES, I’m fairly confident). It’s not Celiac. I just don’t know where else to look or if it’s time to stop looking and just live, which is mostly what we’ve been doing since the Celiac testing came back. He is growing, albeit slowly (6th percentile for height, 9th for weight!), and he is developmentally right on track. There is much to be happy about.

But even with that overwhelming happiness, it seems that I just can’t help but always have this small section of my mind on worry mode. Like there’s a tiny siren going off and I can’t ever fully quiet it. The majority of the time I can ignore it, but it never really stops. And maybe it won’t until we have an answer, or until all the abnormalities stop altogether. Hopefully the latter comes soon, for all our sake, most of all my sweet Will.



  1. Katie:

    I don’t know all Will’s symptoms but two things come to mind? Have they checked his D & B12 levels and look into gastroparesis (idiopathic)?

    Good luck!

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