Child, Positive Genetic Testing, What Would You Do?

[merkia]

(Disclaimer: I'm new here, so apologies if this isn't quite the right place to post this or if I'm a little redundant!)

So, the backstory here is that my boyfriend's family got blood tested a few years ago for celiac disease. I have no idea which tests exactly or what they did (for some reason it's impossible to get a straight answer ) but his sister apparently had an off-the-charts score and was told because the number was so high she MUST have celiacs. My boyfriend and his mom had the same score, which was low, but still slightly elevated I believe. They refused the endoscopy.

My boyfriend suffers from some issues (dry skin, diarrhea/constipation, bloating, gas) and he has spent the majority of his life eating gluten. Despite the blood test, I guess he never took it seriously and continued eating gluten.

In 2010 we had a daughter, and I started getting more interested in the celiac thing as a result. By April 2011 we were gluten-free. Since then I have never knowingly ingested gluten, but I found that it was hiding in a few products we continued to use up until a few months ago. My boyfriend, on the other hand, has continued to eat gluten occasionally. He has tried eating completely gluten-free and then eating gluten and claims he doesn't notice any kind of reaction, but because he's so off-and-on it's kind of hard to tell for sure.

Meanwhile, I became a LOT more informed on the disease, since I realized what kind of effect it can have on the body and life span. I decided against giving my daughter gluten as she was starting solids. She did have bread once (didn't eat it, just licked) and probably had some contaminated rice cereal a few times, but for the most part, she hasn't had much gluten and certainly not within the past year (she was off it earlier than us).

I felt that, knowing her relatives had celiac, it was too much of a risk to ever give her gluten, even though it would mean she could never be officially tested. Then I discovered genetic testing, and got her tested through Enterolab, which gave me these results:

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. 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 (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). 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.

I took this to reaffirm that I should never give her gluten, because if she hasn't already developed celiacs, she could at any time if she eats gluten.

So my main question here is, is it worth it to continue to restrict my daughter's intake of gluten simply because she has a chance of developing celiac disease? I mean, either way (preventative measures or developing celiacs) she ends up not able to eat gluten, so should I just let her eat it until I notice symptoms?

Also, could anyone clarify her genetic results? I understand DQ2.2 carries less risk than DQ2.5. Which does she have? And is her second allele DQ6?