Help Me Inform My Doctor

[alexisb]

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!!!!!!!!!!!!

[Mother of Jibril]

Hi alexisb,

Having a first-degree relative (like a parent) puts you at the highest risk for having celiac disease. The problem with small children is that testing is notoriously unreliable. The tests are designed to show up "positive" only when you have obvious damage to your villi... it takes time to build up that kind of damage! Some kids do test positive, but a lot of them don't even when they have obvious symptoms. At this point you really have three options:

1) Test again (you might get a positive)

2) Do an endoscopy (regardless of the blood test results) to look for damage

3) Assume your daughter has celiac disease and take her off gluten

I know it's not easy to make changes with a child (my son is allergic to peanuts and corn), but if you think changing her diet is the right thing to do... and it does seem very reasonable... then you just need to find the confidence to insist! You can find lots of advice on this forum about coping with daycare, school, etc... ask any questions you like