Baby Of Celiac Parent: How Should She Be Tested?

[alexisb]

I was diagnosed with celiac disease two months after my first child was born. Since then I have been totally gluten-free and so has she. Now that she is a year old, I feel that I should test her, but of course without her having consumed gluten, a bloodtest won't be get me very far! My question is, what is the wisest step to take? I consider my options to be as follows:

1. Expose her to gluten and watch her reaction/get a bloodtest (I just would hate for her to get sick!!!)

2. Get a DNA test to potentially knock out the possibility

3. Do nothing and just keep her gluten free awhile longer.

Does anyone have any experience in this area? My GI and her pediatrician are suprisingly not giving me much direction one way or another.

Thanks to anyone who can give me a little guidance!

[AndreaB]

I'm in the same boat as you. I did not have a celiac panel done or anything like that. I had allergy tests done then went off gluten (except for Rice Dream, which I am now off) and then went through enterolab and learned I have a gluten intolerance. My thinking at this point is to run enterolab as soon as he is old enough to get a sample from. He will get two genes from us either 2 celiac or 1 celiac and 1 gluten insensitive. I definately vote for the gene test. Then take it from there. I, personally, am not too excited about trying gluten with my baby boy. He showed a sensitivity to cross contamination of something I ate. He was strictly breasfed at the time. He's just started solids. I may try him on baby oat cereal but I'm not sure.

[TCA]

My nursing daughter showed symptoms, so I went gluten-free and she improved. Since she was off gluten, we did the gene test through prometheus. I'm a little confused as to the difference in prometheus and enterolab. Prometheus tests for 2 genes, DQ2 and DQ8. Enterolab seems to test for multiple ones. Her GI didn't think enterolab was a good idea and said Prometheus was very good with celiac, so that's why we chose them. I don't think I would stress about it too much yet. If she's in a home that's gluten-free, why not just keep her that way a while longer? If you need to let her eat gluten b/c of daycare or somehting, then just see how she does on it. I don't see the point in challenging her to gluten just to see what it does, though. If you do decide to start her on gluten, you might have her checked after a while to be cautious, or if she's showing symptoms, of course. She may not have it, but your concern is good. I don't see testing if she's not eating gluten anyway, though.

[alexisb]

Thanks for your comments. How do you go about the DNA test? Do I contact Prometheus myself or do it through her pediatrician?

[AndreaB]

Enterolab tests for the celiac genes as well as the gluten sensitivty genes. There are other threads on this forum that talk about enterolab if you are interested in learning more about them. Just do a search for enterolab. Just because a person doesn't have the celiac genes doesn't mean they won't develop non celiac gluten intolerance.

This is from my enterolab test. My husband has 2 celiac genes as well as my oldest son, and my daughter has one of each like me. My infant hasn't been tested yet.

Interpretation Of HLA-DQ Testing: HLA gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

Dr. Fine's work is accepted by some doctors as proof of celiac or gluten intolerance without having to have all the damage done. Since it is a stool test the damage can be caught before the blood shows the IgA levels. My son, daughter and myself are all gluten intolerant. Had we continued eating gluten even though we showed no obvious signs then I believe we would have eventually gotten sick and had many more problems.