Testing Babies

[Phoebe]

My daughter (9.5 months old) has a family history of celiac and food allergies. I'm breastfeeding, so we're both currently dairy-free (otherwise she gets eczema) and mostly gluten-free (she doesn't react to traces in my diet, and there aren't any traces in her diet). We started eliminating wheat and oats when she was 5.5 months old (which cleared up the slimy green poop that I think was allergic colitis, and a persistent anal fissure).

She's otherwise healthy - a skinny little monkey (bounces btwn 3rd and 25th percentile weight for height, but she's always been 95th percentile or higher for height), but cheerful and generally well-looking. Her eczema bothered her, but the GI problems didn't seem to make her fussy or otherwise bothered.

Her pediatrician wanted to do bloodwork for celiac at her 6 month well baby visit, but at that point we'd just gotten the green poop and bloody diapers cleared up, and I didn't want to reintroduce gluten at the same time we were introducing solids.

We were going to try barley, then test at 10 months, but 3 days in I discovered that 3 days is about as much barley as one person can eat. (We'd both have to be consuming gluten and both be tested to have any hope of accurate results, and I wanted to make sure she didn't react to barley in my diet before I fed it to her directly.)

Is there any point in testing her sooner, rather than doing dietary challenges at some point and then testing after age 2, to rule out transient gluten intolerance? I'm also playing around with just getting her gene tested, then picking a path based on those results.

Thanks!

Phoebe

[lauradawn]

Our pediatrician said that the blood work is not incredibly accurate until after 3. My boys are 2 and he felt fairly confident the results were accruate but said the younger they are the more inaccruate it wil be. They did not do any testing on my children when they were babies and had symptoms of multiple allergies very similar to your story. One of mine had blood in his stools consisitantly. they did a colonoscopy and determined it was allergic collitis. But it still took experimenting to find out what it was.

[dotandevan]

Hi, I have an 11 month old who would get diarrhea after eating wheat, barley, oats. I mentioned this to his dr. and she suggested blood tests (but did not mention he had to be eating gluten for blood tests to be diagnostic). The phlebotomists weren't able to draw blood on him. now I'm wondering what's the point? I'm reading about many people trying various and sometimes invasive diagnostics and never getting a definite answer and I can't imagine putting my son through tests which might not tell us anything, especially since he is perfectly healthy when he is gluten free. Anyone else out there debating doing diagnostics when a gluten-free diet seems to be the answer?

-Dorothy

[mat4mel]

Dorothy,

The only reason I would want to get some diagnostics done-- is because Celiac is a serious disease, meaning that you must adhere to the diet your ENTIRE life. If your son's problem were just a wheat ALLERGY, and it could be, then it is likely he will outgrow the problem. The problem you would face then is, if he truly has Celiac, when he is older he might question the diagnosis, and he might sneak gluten here and there, and it is common for him to have no reaction-- then he will say, well I guess I don't have Celiac! You might then feel relieved that he has seemed to outgrow his "wheat intolerance" or "wheat allergy"...It could then take years for him to start having intestinal symptoms again, meanwhile damaging himself. I think this is the main reason I am driven to get an accurate diagnosis for my kids. I hate the idea of having to reintroduce gluten into their diet when it makes them sick. That is why I am leaning towards stool testing through enterolab. Apparently the antibodies show up in the stool for a while after removing gluten from the diet. It is a very frustrating process I know!! I am going through it right now and ready to pull all of my hair out!

Sorry, don't know if I helped any. About the testing not being very accurate before age 3-- my 2 yr old just tested positive for both IgG and IgA antibodies. I know lots of other kids have tested positive before age 3.

Phoebe, I'm not sure about gene testing-- it seems like there is argument as to whether or not you should avoid gluten if you have genes. I just don't know enough about it, so I'm not the best person to respond. What if there are more than one Celiac gene, and they don't catch it, and so you just assume that she doesn't have it, when she might?

[dotandevan]

Thanks for your thoughts. Maybe I'll let him get poked another time and see if they can get any blood. Is the stool test covered by insurance? I'll have to ask his doc about it. I guess it would be much easier to have a simple test done now than have to feed him gluten later on or do a biopsy.

thanks

-Dorothy

[mat4mel]

Hey Dorothy,

I don't know if your insurance will cover Enterolab. I would go look at their website, enterolab.com. Email me if you have any more questions, and I'll see if I can help.

Mel