What Are The Odds?

[ptkds]

We finally got the results back today on my 2 older dd's and my dh. My dd#2 tested positive, but dh and dd#1 were negative. I was so sure that dd#1 would be positive because she has so many celiac symptoms. And dd#2 really doesnt have any symptoms. We are also thinking that our 8 m old dd has it, although she is too young to be tested because she doesn't even eat gluten yet. I was thinking about putting dd#1 on the diet for a while, and then challenging her w/ gluten to see how she reacts in case the test was false.

So my question is: what are the odds that 3 out of 4 kids (maybe even all 4) have celiac disease when only 1 parent has it? The dr wanted to talk to us about "Inconsistent family results", but we haven't set that appt up yet. I am just wondering if this is possible, or if my dh could have had a false negative as well.

Thanks!

ptkds

[Rachel--24]

Did you have the full Celiac panel with the total serum IgA tested?

Is it possible that dd#1 is IgA deficient?? That would be a reason for having a false negative bloodtest.

[kbtoyssni]

I'd say this is entirely possible. Although your husband doesn't have it, he may still carry the gene for it which would make your kids very likely to develop it.

[Ursa Major]

Testing in young children is highly unreliable, and false negatives are frequent. The diet is the best and most reliable test in young children. And really, it is the most reliable test for older kids and adults, too. Because the blood test will NOT pick up on gluten sensitivity, and will only be positive once the celiac disease is very advanced and there is extensive villi damage in people with celiac disease. So, unless you're already very ill, it may be negative even if the person has celiac disease.

So, why don't you just try putting the whole family on a gluten-free diet, to see if it makes a difference, official diagnosis or not.

[momothree]

I also had a hard time with this idea. It appears that at least 2 out of 3 of my kids have celiac (we think the 3rd has it too, but she is only 2). Both my husband and I came back negative. I still don't think I believe that neither my husband or I have it. I'm actually in the midst of further testing for myself, because I really expected my results to be positive. Thankfully I have a doctor who agrees that further testing is warranted and sent me to a GI specialist for follow up. The whole genetics thing confuses me terribly. I don't know if it'll ever make sense to me. If, after all this testing, I still come back negative, I guess I'll just have to face the fact that the genetics end of celiac is one aspect that I will never "get".