Celiac question!

[Lovemy3babies]

Ok. My son is a disaster. Someone here pmed me and said he sounds like her son, and he had celiac. I looked it up, and wow, that is my son. I took it to his doctor and they ran the blood tests until I can see the GI doctor next month. My sons symptoms are as follows, but arnt even close to his extensive history, which includes fevers of unknown origin, ataxia and vertigo.....

Unexplained Anemia
Dark circles under his eyes
Eczema
Big belly
Extreme behavior problems, like extreme extreme. This is the main reason I started looking for a problem. He is hot and cold, irritable, and seems like he is losing his mind most the time. Its hard to explain, but he is out of control, and just seems so lost.
Diarreah
Constant runny nose

Im sure there is more. He has been tested for HIV and meningitis, so many things I cant explain, and everything comes back negative. They treat symtpoms, but there is SOMETHING going on in my little boy. So today I took him off gluten since I cant get into a GI for over a month, just for a few days to see what happens. He has not had one single melt down today. Not one. NOT ONE. Breakfast usually starts with some gluten, then it is all down hill from there. But today, he has been an angel, after a hour and a half melt down last night.

So today the doctors office calls. The dr leaves a message saying keep my GI appointment if I want, but that celiac tests came back normal. Test receptionist reads me the results and says 2 tests came back high. Ok? That isnt NORMAL, doctor

IgA.... 122... under 75 is normal....
Sed rate, or ESR is 31... Normal is under 13....

IgA is the celiac test, and high is abnormal. It is unusual for children to test high on that, why did the doctor say that it was negative?! The test lady said they look for low numbers on that...? No, high, everything I have read says HIGH. Then sed or ESR rate is the rate at which the red blood cells fall in an hour. Faster indicates inflamation, cancer or AUTOIMMUNE DISEASES. Hmm, celiacs IS an autoimmune disease! I think that is a pretty big stinkin deal considering all my kid has been through.

Anyone here know about children IgA, why she would have said this is normal, or any other celiac insight welcome?

[zonapellucida]

OMG this is my child.... I was about to post of his behavior problems at age four....

[Lovemy3babies]

Originally Posted by zonapellucida

OMG this is my child.... I was about to post of his behavior problems at age four....

My son is 2. The last few months have been really really bad. Literally will just start screaming and crying for no reason. Any little thing will set him off to a hour of freaking out. Want a foot ball josh? NOOOOOO... YESSSSS... NOOOOOO.... YESSSSS. ??? im lost hunny, I am just lost! He honestly seems like he is losing his mind to me. He seems so frusterated with the world. He just seems he cant stand it in there. He told me tonight, "Mommy, I eat my food and feel better, I feel better mommy". With no prompting. NONE. Now, I am sure he has heard me gab about it, but he had no melt downs today.

Joshua has had extreme medical history. Fevers for days, 104 and wouldnt go down for 10 days, falling over and dizzy spells, stopped eating all together at one point. Yet no one can find the answer. What is wrong with my boy!

[neveryoumindthere]

You just described my dd before going off gluten. For us too, that DAY, as in a few hours of being 'officially' gluten-free, my dd didn't have a single psychotic meltdown. I was floored because we'd been dealing with several per day.

I'm sorry he might be intolerant to gluten, but you'll be so glad when you see his behaviour get better and better.

[jplain]

If it seems to be gluten, go with it, regardless of the tests!

Did you get the whole name of that test? If it was total IgA, then it wasn't celiac specific. IgA is one type of antibody your body makes. If your total IgA is low, then the celiac tests will come back false negative. It would also be helpful to know what other celiac panel tests were run.

I've made a habit of putting myself down as a "copy results to" contact on lab slip forms, when there's that option. That way I get a complete copy of the results in the mail, sometimes before my doctor's office has had a chance to call with results. In CT it technically isn't legal for labs to release results to patients, but so far they've done it without anything more than asking me if my doctor approves. My answer: Why, yes, of course she does!

[Lovemy3babies]

Thanks! I am waiting for the results in the mail right now. they should be here tomarrow hopefully. Something is going on so we shall see.