2-Year-Old Just Diagnosed
Posted 22 March 2013 - 06:26 PM
IgA: 40 (negative)
IgG: 38.8 (positive)
EMA Titer: 1:40 (positive)
From what I have read, a positive EMA titer (no matter how low the number) is almost certainly celiac. Is this true? My son can't get an appointment with the GI specialist until next week, and I am trying to prepare myself as best I can. I am ready to tackle this challenge if I need to, but if there is a possibility of him not actually having it, I would rather wait to order books, start buying gluten-free, telling friends & family, etc.
Any advice on the bloodwork is greatly appreciated! And thank you so much for everything I have learned already from this forum!!
Posted 22 March 2013 - 07:29 PM
What were the ranges for those numbers? Did he have a total IGA ran as well? Or were those tests the only ones done?
Posted 22 March 2013 - 07:50 PM
Total IgA: 40. (Range 21-150)
Deamidated Ab, IgA: <10 (range <20)
Deamidated Ab, IgG: 38.8 (range <20)
Emdomysial ABTiter: 1:40
His AST level was also high, at 49 (with a range of 15-35).
Posted 22 March 2013 - 10:03 PM
Best wishes. I hope the transition goes well.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
Celiac.com - Celiac Disease Board Moderator
Posted 23 March 2013 - 10:11 AM
Posted 23 March 2013 - 10:50 AM
Look at the bright side. You will put him on a gluten free diet, and after a short adjustment period figuring out the details, your son will have a "normal" life, other than he won't be eating gluten. You will have stopped the auto immune reaction going on inside of him early, before there was a lot of damage. He should gain weight and height, his speech should improve, he won't have severe learning disabilities, etc. If one had to select an auto immune disease, this is the one to get, because the symptoms can be controlled by diet change.
They (researchers) are also working on various medical treatments that may be available within a decade. But the diet is fairly easy, compared to a lifetime of sickness.
Now, two things. One, in a small percentage of children, there is not enough damage yet in the intestines, so they do not have a positive celiac biopsy which goes along with the positive celiac bloodwork. Some doctors will then announce that There Is No Celiac Diagnosis Here, and try to toss you into "undiagnosed land." Save your kid and put him on that gluten free diet anyway, and note how he reacts to it. Does he thrive ? (he should, with those blood tests....) Then petition for them to acknowledge this. There is this whole cottage industry of docs trying to convince people that living on pharma medications while eating the food which causes antibodies and gut damage is a normal behavior. It isn't.
Second, those common genes for celiac are carried by about 30% of the population. And your child got them from somebody, so you may as well get yourself and any other first degree relatives tested, while you're at it. And you may get surprised when and if you start mentioning this to friends and acquaintances, because you probably know a few celiacs or gluten intolerants already, and don't realize it. I ran into another person last week who asked "are you... ?" and I said "yup!" and she said "oh, cool, I mean ... oh, not cool, uh, I mean I totally get this, me too !" and we both ended up laughing really hard.
Posted 25 March 2013 - 09:37 AM
Definitely take this as good news. My guy was not diagnosed until age 5. He went to Early Intervention for speech delays, had enough "odd" tendencies (arm flapping, little eye contact, easily agitated, etc.) that he was tested for ASD every single year - but never quite fit the description. After a sudden behavior change (tantrums, meltdowns, etc.) we took him to the doctor and she tested him for celiac.
Once he was gluten free it was like we had a brand new kid. Happy, calm, confident, focused, chatty. He shot up three inches within weeks. Slept better, ate better, everything was better.
The diet seems overwhelming at first, but once you figure out what you like, it is pretty easy. Our whole house is gluten free and everyone eats a healthier diet because of it.
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