Should I Get My Two Year Old Blood Tested?

[javic]

My daughter has just turned two this month. Her brother has just been diagnosed with celiac so we got a gene test for my daughter (via cheek swab) and turned out she is homozygous for the dq2 gene (has two of the celiac gene).

Now that I am aware of it, I've realised she may have some symptoms of celiac.

Around 5 months of age she started waking in the night screaming as though in pain. She continues to do it to this day, not every night, but some nights, even if I am with her she will push me away and scream. She also would seem to scrunch her legs up when she was younger, as though in pain. I thought it could be UTI but doctors did not seem interested.

She was quite fussy during the day when she was young, and still often has days when she seems very upset for no discernable reason.

She breastfeeds constantly still, but does not eat much in the way of solids.

She has some sign of very early tooth decay in between her two front teeth.

She is on 25th percentile for height, but has gone from 25th to <3rd percetnile for weight.

She has recently started saying she has stomach ache - but we are not sure if she is just copying her brother.

I do want to get her blood tested but she is very scared of strangers and I worry it will be very traumatic for her. If I do not get her tested, we will be going on a gluten free diet after my son's biopsy in two weeks. Thing is, if she is not confirmed to have celiac, then we will not know how strict to be with her diet - can she eat cookies at her friends house, cake at school parties?

So should we get her tested while we can, before we all go gluten free? Is the chance of trauma worth knowing for sure?

[javic]

By the way, Merry Christmas all!

[Ollie's Mom]

I would definitely get the blood work done. The trauma of a blood draw on a toddler is over and forgotten very quickly.

I would make sure the entire celiac panel is run (I'm sure someone will chime in with the full list of tests). I would also document all of those symptoms with the doc so it is in her file. That way, even if the blood tests come back negative, if she has a positive response to the diet there's a chance she could get a diagnosis anyway (non-celiac gluten intolerance).

As for how strict the diet would have to be, if her blood work comes back negative but her symptoms resolve on a gluten-free diet, I personally would be as strict as if the tests had come back positive. False negative test results are a real possibility, so why take a chance? Also, if she's feeling better, why risk getting her sick? Just my 2

[tarnalberry]

Absolutely, I would get her tested. You have described some of the most common symptoms of celiac disease, especially in children. I'd get her tested ASAP.

But I would do the same as the PP suggested - regardless of the test result, try her gluten free (strictly gluten free). If you notice a real change, I would assume that she is celiac or intolerant and avoid even cookies at friend's houses.

[javic]

Thanks for your thoughts. It convinced me to get her tested so we went today. She was very upset but it was over in a minute or two and we'll get a better idea now. Very glad to have done it.