Who In Family Needs To Be Tested If I Am A Celiac

[Ilovehorses]

Yet another question but one I think I know the answer to, if I am positive (waiting for bloods ATM) who in my family needs to be tested? I'm guessing my mum, dad, brothers and sister. However do their children need testing, I have four neices and nephews with another on the way. All the children are under four and have never shown any signs. Upsets me to think they might be affected and in a stupid way I think it's my fault somehow :-(

[kareng]

This is from the Univ of Chicago Celiac Center. I use this because the info is easy to find & read.

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When an individual is diagnosed with celiac disease,

the entire family learns that they must be tested for

the condition, for they are now at risk. First degree

relatives (parent, child, sibling) have a 1 in 22 chance

of developing celiac disease in their lifetimes; in second

degree relatives, (aunt, uncle, cousin, grandparent) the

risk is 1 in 39. A simple genetic test can determine if

further screening is needed or completely rule out the

possibility of developing the disease. If the genetic test

shows positive for celiac disease, the individual should

have antibody screening regularly to help determine if the

disease is active.

With my kids, we just did the basic blood screening. I didn't want a genetic test on the medical record. About 30% of people have one of the genes they test for but most do not develope Celiac.

Because the blood test were negative and they don't have any issues, we won't re-test for 2 or 3 years or if they develope problems

[ravenwoodglass]

The only thing that I would disagree with in the quote the previous poster gave you is the genetic part. Usually they only test for the 2 most common genes when there are others that can be associated with celiac. Even if the gene tests are negative that does not rule out someone developing celiac. Unfortunately my family has first hand experience with this. One of my children was diagnoed by both blood and biopsy but later after moving out on her own had gene testing done. They said the previous diagnosis was wrong and that she should go back to eating gluten. All symptoms are now attributed to 'nerves'.

So do have all first degree relatives screened and even if the tests are negative if symptoms appear to be celiac related do have them try the diet after all testing is done.

[kareng]

The only thing that I would disagree with in the quote the previous poster gave you is the genetic part. Usually they only test for the 2 most common genes when there are others that can be associated with celiac. Even if the gene tests are negative that does not rule out someone developing celiac. Unfortunately my family has first hand experience with this. One of my children was diagnoed by both blood and biopsy but later after moving out on her own had gene testing done. They said the previous diagnosis was wrong and that she should go back to eating gluten. All symptoms are now attributed to 'nerves'.

So do have all first degree relatives screened and even if the tests are negative if symptoms appear to be celiac related do have them try the diet after all testing is done.

I said " the genes they test for". Should have been more specific. Like Raven said, there appear to be more genes or combinations that can be associated with Celiac. In the US, they do not test for these additional genes yet.