Siblings Have Celiac, When Should Baby Be Tested?

[MomToCeliacs]

Hello! I am the mom to five kids. The oldest son and daughter were diagnosed with celiac at the same time at age 9 and 7, though they both had been suffering for years (my son worse). The two younger ones were tested, then 6 and 4 and neither test positive and neither have symptoms. Both kids are great without gluten at the moment, and the other two kids don't have all that much gluten but are exposed to it readily and are also fine.

 

There is no family incidence of it, but my husband and I must have the genetic component in there somewhere.

 

We also have a baby, now 15 months old (12 months-ish adjusted) with food allergies, which none of the other children have. She was dx'd with a peanut allergy at 9 months and a dairy allergy at 12 months. She was failure to thrive pretty much since birth, but officially around 8 months. She was a preemie born at 27 weeks after IUGR, so she was frankly destined to be small.

 

Seems to be doing very well with her diet at the moment and is finally gaining weight again, but we are told that she will likely have more allergies crop up when she is tested again at 18 months.

 

Thus far her main symptoms for her allergies have been skin rash/exzema and general grumpiness/colic, as well as some concerning enlarged lymph nodes. Around 5 months while she was exclusively breast fed, I started an elimination diet due to the rash, but it didn't help. As her rashes got worse and the lymph nodes got more enlarged, allergy testing was suggested and we got the ball rolling with the peanut dx and dropped the breast milk entirely... to a milk based formula, which led to the dairy dx. Never had her tested for celiac, as we were told it wouldn't be until age 2 or 3 at least where she would be able to be diagnosed.

 

We introduced gluten to her diet at 9 months/6ish months adjusted because I know that in order to be diagnosed she has to have had gluten in her. She has yet to have what I think are the more classic celiac symptoms -- various tommy troubles. Even on gluten, her rash is essentially gone except for some dry skin and she is no longer spotty and scratchy.

 

But because of the food issues already, and the familial incidence, we want to get her tested as soon as it would be realiable. Should we wait for symptoms or should we test sooner rather than later? With no symptoms, even if she will develop Celiac, will she be able to be tested for it now? Maybe wait until 18 months with the rest of her allergy tests?

 

Thoughts, celiac parents?

 

 

[greenbeanie]

I'd go for the tests now, or next time she's having blood drawn for any other purpose, as long as the doctor is willing to re-test her periodically even if the results are negative. You certainly might get a false negative at that age, but you also might get a positive - and if you do, it would be really great to catch it sooner rather than later! Especially with your older children having celiac, it seems like the doctors should be willing to test frequently.

My daughter was born 5 weeks early and had serious birth complications, though fortunately she stabilized pretty quickly and was released from the hospital in a week. She also had extreme fussiness that doctors keep saying was colic until it lasted well over six months, and she had obvious problems with my breast milk when I was exclusively breast feeding. An allergist and pediatric GI eventually had us try Alimentum formula (hypo-allergenic but still milk-based), and when she couldn't tolerate that we put her on Neocate, which was like magic. She thrived on Neocate and we introduced solids late, but her problems returned and gradually grew worse once she started eating table foods. Her problems as an infant and young toddler were mostly neurological/sensory/behavioral; the clear intestinal symptoms didn't develop until she was around 2. At age 4, she was diagnosed with celiac. All three of her blood tests were clear positives, and the biopsy confirmed it, even though she really wasn't eating that much wheat. Of course I can't know this for sure, but I strongly suspect that she would have tested positive at a much younger age if anyone had ordered the tests, and the last few years would have been much better for all of us if we'd known sooner.

As long as your doctors are aware that false negatives are likely in toddlers - and it sounds like they do recognize this - I can't see what harm it would do to test now (and then repeat in a year or so if it's negative). Good luck!

[nvsmom]

I would test her soon too. The DGP tests are the most reliable for toddlers. If you will be continuing to give her gluten, I would sugest retesting every year if you can.

 

Ideally, after her first test, I would have her go gluten-free to see if it makes her feel better. It would be a shame if she developed more symptoms in the months between testing and had to suffer for most of a year or two. Two month gluten cahllenges aren't fun for people with gluten sensitivities but living a year on gluten is far worse. I think going gluten-free without a diagnosis (if it's negative) can't hurt her; it can only possibly help.

 

I hope she feels better soon. Best wishes.

[frieze]

I just haven't figured out why you would feed gluten to this child, at all....

[stanleymonkey]

I guess the baby is getting gluten as just because the eldest 2 have celiac does not mean the youngest will, or any of the others.

We are expecting our 3rd ndnour immunologist has told us that exact thing. kids are a genetic lottery. My eldest had anaphylactic allergies, my youngest has none. Our girls have not been officially diagnosed, but have been told assume celiac. They both get too sick to continue testing.

To the OP, it sounds like your docs have their heads screwed on and have a good understanding of celiac. As some of the others said, as long as the docs understand false negatives in toddlers I'd follow their advice. Our ped and immunologist say all celiac testing is unreliable in kids under 5, but given that you already hveb2 celiac kids, I guess you know what signs to look out for. If you feel something isn't right just push to have her retested. Our then 2 yr old was so sick that the head of pds a tour local kids hospital was stunned, but she still tested negative for celiac.

As for the allergies, a dairy allergy is usually grown out of. My eldest had an anaphylactic allergy to milk and out grew it a 3 1/2, most kids put grow it by 5.

Remember if you feel gluten is affecting her push for testing, and if it is negative, a gluten free trial will do no harm.

[MomToCeliacs]

I just haven't figured out why you would feed gluten to this child, at all....

 

We have a mixed kitchen just because it is less expensive to feed two kids 100% gluten free than it is to feed 6/7 people. Neither of them have been glutened in our kitchen since maybe two, three months after the two were diagnosed. There are some gluten things we restrict, and we try to not have sweets/treats in the house that have gluten, just to be fair. (Also, gluten free desserts are pretty darn good.)

 

We didn't deliberately add gluten to the baby's diet, like, "oh, she's starting solids? let's overload her with gluten, get that celiac's rolling" of course. Essentially we let her eat whatever she wanted to eat as long as she would eat it. We tried to get her to breast feed again after my diet was controlled, she had little baby associations that food/breast = bad. It was poison to her, so I can't blame her. So we didn't want to restrict her any more, especially since the peanut allergy at least will more than likely be a lifetime thing and we were even told that more allergies are likely to crop up (though hopefully she'll grow out of the milk!).

 

Maybe we should have kept her gluten free. But we needed her to eat something, as her weight was severely plateau'd.

 

We asked her doctor if continuing with gluten (I wasn't entirely gluten free while breast feeding, so she likely was getting some in her via breast milk anyway) was a bad idea after the first wave of allergy tests. We were told to take it bit by bit, but that the rash didn't look at all like dermatitis herpetiformis and she had no GI issues, so we had no reason to believe that she was already Celiac, but to watch out for more Celiac related symptoms. This is also where we got the news that it would be for a few years until the testing started to become reliable, and her severe peanut allergy combined with how much peanut butter I was eating while breast feeding was enough to think it was just peanuts at that moment. She didn't start reacting to milk until after she started the milk based formula. We switched it after we thought it could be the milk (in between the peanut and dairy dx we got a pretty disapoiting diagnosis of, "maybe it's JUST exzema"), and BOOM, finally thrived.  

 

I honestly don't think she is being effected by the gluten at the moment, and if she IS, it is so extremely mildly. She's doing great, back on her own little weight curve and is just much more pleasent in general. No rashes. If my oldest two weren't celiacs I would have no reason to think that she has it. But she has a liklihood of getting it, which brought on the mama worries. I started thinking of it after I scheduled her 18 month allergy retest, which will be the end of September.

 

As per advice here, I think we'll try to get her tested around the same time as her 18 month allergy retest, and sooner if she starts showing symptoms that are worrisome. 

[nvsmom]

i would keep an eye on her for non-GI symptoms too. My cousin's 10 year old son was recently diagnosed with celiac disease and his only (recognized) symptoms were ADD and some cognitive issues. I personnaly get a lot of joint pain from gluten. It began when I was a kid; I remember at age 9, having my knees wrapped for basketball because of my "growing pains" - those growing pains turned into pretty serious arthralgias by my 20's.

 

Best wishes of good health to your family.