Crossposted over on the celiac.com forums ..
My 27mo has always had a pretty long queue of medical issues to deal with, and no-one seems to have any idea what's going on. He goes in to see a gastroenterologist on Monday but until then, I'm going freakin' crazy here. I suspect he has celiac, but I can't order the Enterolab test (they won't ship to my state) so I get to wait.
Here're his symptoms.
--Constant reflux up until .. a year or so?
--Green mucousy poops for .. a year or so. Still mucousy if he eats dairy.
--Gained no weight for several months in the first year. This seemed to resolve and he's about 50th %ile now.
--Sleep issues. Constantly. And he wouldn't seem rested when he was awake.
--Gas. On and off. Really painful when he was tiny.
--Dark circles under his eyes, regardless how much sleep he has.
--Chronic nasal congestion without infections. Unrelated to humidity, season, etc.
--Very pale.
--Chronic cradle cap. He's still got it. Unresponsive to treatment.
--Iron-deficiency anemia. Not terribly responsive to supplements. Pre-anemic now as his ferritin level at ITS HIGHEST was 22 and last time we'd checked it was back to 9.
--His white count has either been elevated or high-normal every time it's been taken.
--Speech delay. He's in EI for an unidentified delay (he passed his hearing screen, etc.) and it's doing nothing. He crawled and walked late too.
--Possible tooth enamel/mineralization issues. (Where the iron supplements stained his teeth it turned into a fossilized brown crud on the surface which I can't scrub off with baking soda. He's scheduled for a dental appointment next month.)
--Mushy poops. They're pretty stinky, but, y'know, it's poop.
--Super acidic poops sometimes, and I'm not sure what causes them. Like, he'll get oozing open sore diaper rashes that take a week of antibiotic ointment to heal.
--His liver panel came back yesterday and his transaminases, glucose, BUN/creatinine ratio, and albumin are elevated. The transaminases are about double of the upper normal limit, as is the BUN/creatinine ratio, although both the BUN and creatinine are well within normal (?).
--On-and-off periods of clinginess, fussiness, acting like something's bothering him (which he can't tell me about because of the speech delay). My mommy-sense says something's up and I just don't know what it is.
I'm sure there's stuff I'm forgetting. He's also had probably-unrelated issues, like jaundice at birth and surgery at 6mo for a hernia.
The past two days (of course, pretty much since I decided to take him off gluten regardless what the testing says, once we get it run) he's learned to sign for cereal, so of course he's wanted nothing but cereal. Not the gluten-free kind either. And both nights his sleep was awful, he was super gassy, his nose was all stuffy for no reason we could discern, and he was really cranky when he woke up.
He doesn't LOOK sick. When he's in a good mood he has tons of energy and is very friendly, social, etc. The liver panel is freaking me out a little. You wouldn't know to look at him that he's probably been fighting SOMETHING off pretty hard for the whole length of his little life. And if it's celiac I feel horrible for poisoning him .. and for DELIBERATELY poisoning him now, until we can run some tests.
Does this sound like celiac? And if not, what? It all points to probably something digestive to me. The liver panel, though, is alarming. I don't know much about the topic but those numbers seem pretty high. I've seen elevated transaminases as indicative of celiac a few times in my research. But I really don't know. I wish the stupid tests were conclusive. Then at least I'd have an answer.
Thanks so much. I'm driving myself insane here.
My 27mo has always had a pretty long queue of medical issues to deal with, and no-one seems to have any idea what's going on. He goes in to see a gastroenterologist on Monday but until then, I'm going freakin' crazy here. I suspect he has celiac, but I can't order the Enterolab test (they won't ship to my state) so I get to wait.
Here're his symptoms.
--Constant reflux up until .. a year or so?
--Green mucousy poops for .. a year or so. Still mucousy if he eats dairy.
--Gained no weight for several months in the first year. This seemed to resolve and he's about 50th %ile now.
--Sleep issues. Constantly. And he wouldn't seem rested when he was awake.
--Gas. On and off. Really painful when he was tiny.
--Dark circles under his eyes, regardless how much sleep he has.
--Chronic nasal congestion without infections. Unrelated to humidity, season, etc.
--Very pale.
--Chronic cradle cap. He's still got it. Unresponsive to treatment.
--Iron-deficiency anemia. Not terribly responsive to supplements. Pre-anemic now as his ferritin level at ITS HIGHEST was 22 and last time we'd checked it was back to 9.
--His white count has either been elevated or high-normal every time it's been taken.
--Speech delay. He's in EI for an unidentified delay (he passed his hearing screen, etc.) and it's doing nothing. He crawled and walked late too.
--Possible tooth enamel/mineralization issues. (Where the iron supplements stained his teeth it turned into a fossilized brown crud on the surface which I can't scrub off with baking soda. He's scheduled for a dental appointment next month.)
--Mushy poops. They're pretty stinky, but, y'know, it's poop.
--Super acidic poops sometimes, and I'm not sure what causes them. Like, he'll get oozing open sore diaper rashes that take a week of antibiotic ointment to heal.
--His liver panel came back yesterday and his transaminases, glucose, BUN/creatinine ratio, and albumin are elevated. The transaminases are about double of the upper normal limit, as is the BUN/creatinine ratio, although both the BUN and creatinine are well within normal (?).
--On-and-off periods of clinginess, fussiness, acting like something's bothering him (which he can't tell me about because of the speech delay). My mommy-sense says something's up and I just don't know what it is.
I'm sure there's stuff I'm forgetting. He's also had probably-unrelated issues, like jaundice at birth and surgery at 6mo for a hernia.
The past two days (of course, pretty much since I decided to take him off gluten regardless what the testing says, once we get it run) he's learned to sign for cereal, so of course he's wanted nothing but cereal. Not the gluten-free kind either. And both nights his sleep was awful, he was super gassy, his nose was all stuffy for no reason we could discern, and he was really cranky when he woke up.
He doesn't LOOK sick. When he's in a good mood he has tons of energy and is very friendly, social, etc. The liver panel is freaking me out a little. You wouldn't know to look at him that he's probably been fighting SOMETHING off pretty hard for the whole length of his little life. And if it's celiac I feel horrible for poisoning him .. and for DELIBERATELY poisoning him now, until we can run some tests.
Does this sound like celiac? And if not, what? It all points to probably something digestive to me. The liver panel, though, is alarming. I don't know much about the topic but those numbers seem pretty high. I've seen elevated transaminases as indicative of celiac a few times in my research. But I really don't know. I wish the stupid tests were conclusive. Then at least I'd have an answer.
Thanks so much. I'm driving myself insane here.
