2-Year-Old Just Diagnosed

bennett'smom · March 23, 2013

My 2-year-old son was recently tested (after failure to thrive, speech delays, and other symptoms) and his bloodwork came back with "positive antibodies." His pedi referred us to a Celiac Center at our children's hospital, but told us that my son has not been officially diagnosed. I am holding out a little hope that he may not have it, but after some Internet research, it's looking like he almost certainly does have Celiac. His bloodwork is as follows:

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!!

shadowicewolf · March 23, 2013

What were the ranges for those numbers? Did he have a total IGA ran as well? Or were those tests the only ones done?

bennett'smom · March 23, 2013

I'm having a hard time deciphering the test results, but it looks like it might be:

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).

Thanks!

nvsmom · March 23, 2013

His EMA titre was the same as mine.... After thirty odd years undiagnosed. Both tests have a specificity of over 90% so i think that a diagnosis is fairly certain with those two positive tests. The DGP IgG is very sensitive and specific... I think it is time to start buying gluten-free.

Best wishes. I hope the transition goes well.

mommida · March 23, 2013

Sounds like your son will have an endoscopy with biopsy for gold standard diagnoses. Keep his normal diet. Until after the scope.

Takala · March 23, 2013

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.

Cara in Boston · March 25, 2013

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.

cara