Testing For Celiacs For Toddlers

[AugieAlexMom]

I was recently diagnosed with Celiacs via a biopsy. My understanding is that all first degree relatives should be tested (and possibly second degree) due to the increased likelyhood that they may have Celiacs.

My sons are 3 years old & 16 months. Is it possible to test them? Is there a difference in the blood test for them vs for adults? I know they can't have the biopsy.

The GI doc who did my biopsy told my family practise nurse something like "the boys are too young for their bodies to know how to be allergic to gluten"

They do seem to be asymptematic, although the 16 month old does have diahrrea stools more often than seems normal. But both boys are growing & gaining weight just fine.

Is it possible for toddlers to be asymptematic but have Celiacs (like adults can)? Does it make sense to have them tested as a baseline in case there are issues down the road?

Any guidance, or help convincing my family practise doc that testing makes sense, would be appreciated!

[tarnalberry]

Your doctor's comment was extraordinarily ignorant on two (make that three) fronts:

1) it's not an allergy; it's an auto-immune response

2) infant presentations are quite common (it used to be thought that it HAD to present in infancy), particularly around the time of food introduction

3) "failure to thrive" and falling off the growth charts isn't the only way a young child will present with celiac or gluten intolerance

(oh, and yes, kids CAN have the biopsy)

Testing under 2 years old is unreliable, and after that still isn't perfect, but better than before two.

It's up to you. If you are comfortable going on symptoms you can see (knowing that they can't really describe some things as out of the ordinary if they're ordinary for them), then I wouldn't rush to have them preemptively tested. But if you feel it's important, I'd push for it. You can either say "I would like to test them, thank you" or give him/her with RELEVANT studies from medical journals that demonstrate sound reason behind your request (you may be ignored, you might not be).

[AugieAlexMom]

Your doctor's comment was extraordinarily ignorant on two (make that three) fronts:

1) it's not an allergy; it's an auto-immune response

2) infant presentations are quite common (it used to be thought that it HAD to present in infancy), particularly around the time of food introduction

3) "failure to thrive" and falling off the growth charts isn't the only way a young child will present with celiac or gluten intolerance

(oh, and yes, kids CAN have the biopsy)

Testing under 2 years old is unreliable, and after that still isn't perfect, but better than before two.

It's up to you. If you are comfortable going on symptoms you can see (knowing that they can't really describe some things as out of the ordinary if they're ordinary for them), then I wouldn't rush to have them preemptively tested. But if you feel it's important, I'd push for it. You can either say "I would like to test them, thank you" or give him/her with RELEVANT studies from medical journals that demonstrate sound reason behind your request (you may be ignored, you might not be).

At how young an age can children have the biopsy?

I don't remember if the GI doc said "allergy" but regardless, he's so far off base on whether my children could have Celiacs, its scary. But I don't need to get him to do testing, I just need to get my family practise doc to order the blood tests. She's far more reasonable (she did "let" me go for a VBAC even though she was convinced I wasn't a good candidate), but I would like something to show her. Does anyone know of a relevant study, or anything else, that I could use? I'm going to keep digging, and am waiting on a call from my naturopath (who I trust with this more than anyone I've met), but any additional guidance/help would be appreciated!

[buffettbride]

Tests on kids, espec. that young, can be unreliable. If I were in your shoes, I wouldn't pursue testing unless they started to exhibit symptoms and/or when they were at an age when the blood tests are more reliable, so that you are not overlooking Celiac that may be asymptomatic.

Of course, now that you will be gluten-free, they will probably consume less gluten as well.

My daughter was 9 when she was diagnosed, but had presented symptoms as early as 3 (even into infancy if I *really* think about it).

[Chelsea-A]

I would have the blood test done. It's not 100%. But even for little kids it is very helpful. Having said that, my son's blood test were not conclusive for celiac. His total IgA's were borderline low. But his biopsy was positive. He had dirrhea for months and fell off his growth curve.

It's standard of care to have immediate family tested for celiac. It really shouldn't be a question. If they have no symptoms, the decision to do a biopsy shoud be made if they do have positive blood work.

My son had his biopsy at 13 months old.