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bluejaunte

Please Help Me Diagnose My 2Yo!

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New poster here .. this may get long. Thanks in advance if you make it through. Really need some experienced advice 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.

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This is one of those many days when I wish I had a medical degree. Many of the symtpoms you describe could definitely be due to celiac disease, others, I'm not sure about, but that is just my ignorance. Nothing is harder than waiting for those specialist appointments, is it? At least you are armed and ready with all your facts and observations. Definitely take your list along, in case your little guy distracts you or the doctor doesn't seem to be a great listener. Hope it goes well - and I'd love to hear what the doctor says.

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Thanks! I'll update after we see the GI doc. Really very annoyed we can't get the Enterolab test.

The thing is, I've seen all his symptoms listed in some combination or other as celiac symptoms. But as far as I can tell, celiac's standard presentation is there is no standard presentation, so hopefully the GI doc will have some sense of what this is.

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I would say that Celiac is a definite possibility.

Here are some of the things that our son had---

the biggest, speech delays (which we have seen a specialist at Vanderbilt for and he told us our son's delays are because of celiac---how I wish I would have known sooner)

problems sleeping (would wake overnight in discomfort and was up for some time)

unusual BMS---4 to 5 a day, with a consistency none of our other kids had (he would often have a rash so I had to put aquophor on all the time)

terrible allergies---allergic to all 20 items allergist tested him for at 36 months (took him to allergist because of his nasal congestion and clear, runny nose)

iron deficiency anemia (found out about this after finding out about gluten issues)

I do know of another boy who had so many dental problems (and severe speech delays) that the dentist put him under to do the work. The parents had the pedi run all the blood tests to see what was going on---he was very elevated for the celiac panel.

We had our son tested through Enterolab---two celiac genes and elevated antibodies. He's been gluten free for 2.5 years. When he gets glutened, he has BM issues, then brain fog and speech regression for 8 weeks. We try as hard as we can to keep him away from gluten---can't afford to have him going backwards in his speech.

I used to grind my own wheat and add gluten to our bread---yikes! Our son ate it for almost two years before I knew.

Maybe try the diet and see how he does.

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According to my Natural Practitioner, the liver can, and usually does have some struggles with any health problem. It can definitely get back to functioning well after you figure out the cause of the health problems. So, try not to worry too much before you talk to the doctor - I know... it's almost impossible to not worry about your child when their health is a concern.

As far as whether or not he could have Celiac, I think it's definitely a possibility from the research I have done. My two youngest have had health problems (many of them the same as your son) since they were a couple of weeks old. I feel so bad hearing about other people who have gone through the same things we have gone through. It's such a tough road to go down and very heart breaking. I hope you find out the root of everything one way or another soon. And try to be encouraged that your son has you for a mom - someone who isn't going to quit until she finds answers. You are doing everything you can and all these trials are not your fault. Even if you find out it's been gluten the whole time - there is no way you could have known about that until this health stuff happened.

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I wish I could help you, but, unfortunately, I'm in the same boat.

Please please please post whatever your son's diagnosis is on here. I could have written that symptom list myself (minus the liver info... we haven't tested it yet).

Good luck and healthier vibes your way.

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Wow I would say Celiac disease. why in the world do they not list horrible diaper rash in babies and acidic ppop as symptoms. LOL All you can do is wait for the test and if someone tells you it is impossibale try try again until you get an answer. Good Luck to you and your little one.

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If all other tests fail, you might want to check out Entero Lab (they have a web sight). I have heard many other people say good things about it (they test for many of the most common allergies). I would have done it for my kids, but I couldn't get our insurance to pay for it and we don't have the finances for it (my husband is a full time student right now). It sounds like it might be more accurate and a lot easier than doing a lot of blood work - especially where children are concerned.

I hope you both have answers soon.

~Sarah

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Oh! I must have missed your post about Entero Lab. I guess it's a no-go.

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My daughter had butt-blistering poops as a baby also. Never occurred to me at the time that it could be related to gluten. Now it makes MUCH more sense. She wasn't diagnosed until she was 9, though.

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