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I Have Celiac- Think My Daughter Does, Too...

alexisb

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alexisb Rookie
alexisb
Posted

I need help! I have Celiac and I strongly suspect that my two year old is coming down with it. Persistent, mucousy D two weeks long now. I had her tested last December and she was negative, but she really didn't have any symptoms, we just tested to be sure. I took her in yesterday and he suggested some changes from the BRAT diet. Nothing has helped. She's been on gluten all the while. I know an obvious suggestion would be to try to go gluten-free with her, but with siblings and church, etc. its really hard, and I would rather just get her blood tested right away to confirm things. These are my questions:

1. What are the real statistics out there on the percentage of kids who get celiac who have Celiac parents?

2. If my little Mary had a negative blood test in December aren't I right that Celiac can just pop up anytime? (and I know that there can be false negatives...)

We're going back to see him tomorrow and I want to be a bit more informed. HELP!!!!!!!!!!!!

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mushroom Proficient
mushroom
Posted
I need help! I have Celiac and I strongly suspect that my two year old is coming down with it. Persistent, mucousy D two weeks long now. I had her tested last December and she was negative, but she really didn't have any symptoms, we just tested to be sure. I took her in yesterday and he suggested some changes from the BRAT diet. Nothing has helped. She's been on gluten all the while. I know an obvious suggestion would be to try to go gluten-free with her, but with siblings and church, etc. its really hard, and I would rather just get her blood tested right away to confirm things. These are my questions:

1. What are the real statistics out there on the percentage of kids who get celiac who have Celiac parents?

2. If my little Mary had a negative blood test in December aren't I right that Celiac can just pop up anytime? (and I know that there can be false negatives...)

We're going back to see him tomorrow and I want to be a bit more informed. HELP!!!!!!!!!!!!

Toddlers are notoriously hard to accurately diagnose. It may well be with family history that she is celiac, but trying to get it proven by a doctor's diagnosis may be very difficult. If you are gluten free, why is it so hard to try her on gluten free too?

I don't think there are any statistics as to the percentage of people who inherit the gene who go on to develop celiac. Once you get beyond cihldhood it seems to take some kind of trauma or stress to the body to activate it and, as I said, the testing of youngsters is quite unreliable. Certainly it can crop up at any time but whether the testing will show it is another story. The best test would be to see if Mary improves on a gluten free diet, at this point. I know this is not the answer you wanted; perhaps someone else will have a more satisfactory answer.

ang1e0251 Contributor
ang1e0251
Posted

It is hard enough to get dx'd as an adult but as a toddler, whew, it can be really tough. Why not have your dr run the panel again, even if you have to insist? Remember it can still be negative, it often is in young children. Ask your dr that if you put your child on a gluten-free diet trial, what results would he consider a positive response leading to a dx?

no-more-muffins Apprentice
no-more-muffins
Posted

Have you considered (or heard of) the gluten testing offered by enterolab.com? They don't diagnose celiac per se, but they can tell you if your baby has gluten intolerance.

I would suspect though if you have it, and if she is symptomatic, it would be worth it to give the gluten-free diet a chance. I think I'd do that and see if you see improvement. That is as good as an official Dr. diagnosis IMO. And cheaper, and you don't have to wait for her to get sicker before doing something about it.

mmmomx2 Rookie
mmmomx2
Posted

Danna Korn cites in her book that 10 to 30 percent of Celiacs have a first degree relative with Celiac, so the chances are good, especially considering her symptoms. I only discovered I was after going on the gluten free diet for my son. The blood work, according to our pediatric GI specialist, is notorious for false negatives (including my son's), so you may want to consider the endoscopy if you really want a firm diagnosis. I would be inclined to agree with the other posts and just try the diet, since you are already on it. If her symptoms stop, then you know.

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