Kids with Celiac & Genetic Testing?

westcoaststyle

Our son, Cy, was diagnosed with Celiac Disease almost a year ago. His blood test tested positive, as did his upper endoscopy. Since going gluten-free, he has gained nearly 12 lbs and is a "regular" healthy and happy 3 year old. We now have a 7-month old daughter and I'm anxious to know what her chances of developing Celiac Disease are. My husband and I have both had the Celiac blood panel done and neither of us currently have CD. That said, one or both of us obviously carries the gene for the disease. Our pediatric GI doc has recommended genetic testing and I'm looking into it (cost, ins. coverage, etc.). Not quite sure what my question is here... just wondering if any of you have done/researched genetic testing? Would you recommend it? Thanks, and I'm so happy The Bump has created this board.

MaxandRuby

I never had genetic testing done but I do know specifically what branch on my family tree I got it from (in talking with family members a couple of them have the exact same thing I do).

dixiedrummer07

I had the genetic test done in October 2008 and I want to say they also did a lactose intolerance test too... if I remember correctly it was just under $2000.

I had multiple digestive problems and tried a variety of medications, and different diets (dairy free, caffeine free) and had different tests and procedures done but everything came up negative. 

I didn't test positive with the regular blood panel test, but because I had the genetic characteristics, I switched to a gluten-free diet and I've been MUCH better! 

westcoaststyle

Oh that's so interesting that you tested negative on the blood panel, but the genetic testing showed you had the gene and when you went GF you felt better. We can't totally trace which side of the family the Celiac gene could be on which is why we're leaning towards doing the genetic testing. If both my DH and I have the gene (which we could given the various family members that have stomach issues), we could know that DD has a fairly good chance of becoming Celiac. And, personally, I think DH has the gene because he has way more stomach issues than I do... maybe if he tested positive for the gene he could go GF and feel better. Just have to convince him to give up beer. Thanks for responding!

Coleslawcat

I have celiac disease, confirmed by blood panel and biopsy. My oldest two children have had negative blood panel tests, but I know that is horribly inaccurate in young children. I want to get all three the genetic test just so I will know if there is a possibility they will develop it in the future. I hate the worry every single time one of them has diarrhea or a tummy ache. I just want to know who I have to look out for and who is safe from getting it.

DandelionMom

westcoaststyle:

Just have to convince him to give up beer. Thanks for responding!

There are some good gf beers!  I like Redbridge.  And Woodchuck makes several gf ciders that are great. 

dixiedrummer07

You are certainly welcome!  I'm not sure which side of my parents carries it because none of my immediate family members have issues like mine... I'm just lucky I guess!

 I just had DS (6 weeks ago) and so far his pediatrician said it was best to wait it out before we test... but I hope all goes well for your little one!

 oh.. and the Woodchuck's cider mentioned earlier is pretty tasty.. 

julandjo

Both of my kids are suspected Celiacs, but have never been tested because since day 1 they can't tolerate any gluten, let alone the several-months-exposure that would be needed for the blood test or biopsy.  When the second kid was showing as many problems as the first did, I decided to get myself tested.  Blood test negative, biopsy "raging positive", and genetic test "ambiguous".  That's the thing about the genetic test - all it tells you is whether it's possible that you have CD; it's not a diagnostic tool per se.  Armed with all my test results, we went back to the kids' GI doc.  He said he'd go ahead and diagnose them each as a Celiac based on their symptoms and my test results.  That's my story, for whatever it's worth.