Gene Testing?

[earthmama]

Hi,

I'm new here (though have spent countless hours as a guest learner) and am finally ready to post! I stumbled upon all of this when I did a gluten free trial myself this fall and am literally a new person (headaches, fatugue, daily nausea, bloating and indigestion). DD had frequent tummy aches, constipation, pale stools, canker sores and unexplained mood swings. All symptoms cleared up within days on a gluten free diet. I'm willing to stay on the diet myself without a confirmed dx but was not willing to commit a 5 year old to it so decided to do the gene test on dd through Enterolab (which I hoped might also shed light on my genetics!)

Her genes revealed both a celiac gene and a gluten sensitive gene. What this tells me for sure is that both my husband and I possess gluten sensitive genes, that DD will pass a gluten senstive gene to her children and that she could be, or already is, celiac.

Dr Fine maintains (hypothesizes) that everyone with a celiac gene is gluten sensitive. I plan on keeping dd on a gluten-free diet.

Is further testing necessary?

Should I have gene tests performed on my asymptomatic children? The chances are pretty good that they too will possess gluten sensitive genes.

Does everyone with a gluten sensitive gene experence some form of gluten sensitivity?

This network is wonderful and has provided me with so much comfort and information as we walk this road. Thanks so much to the veterans who share their knowledge and experince with us newbies!

[CarlaB]

Does everyone with a gluten sensitive gene experence some form of gluten sensitivity?

Not necessarily. There is only ONE gene that is not considered gluten sensitive, and it's only found in Asians (DQ4). If you and your child feel better gluten-free, then stay gluten-free. If you have doubts down the road, challenge and see how you react to gluten.

About 30% of the general public have a celiac gene, but only 1% ever develop celiac.

It's up to you whether you get everyone tested. I tested two symptomatic daughters with Enterolab (we don't have celiac genes). One was positive for gluten intolerance, one was negative.

The positive child challenged gluten last Christmas break and she decided that she never wanted to eat it again (she's 13). My oldest daughter was not tested, but tried the diet and her allergies went away. She does not eat gluten either. The rest of the family does (we have six kids).

[earthmama]

Thanks....my head has been spinning trying to figure all of this out. It's appealing to just do it and go gluten-free for the time being as we piece together this family puzzle. Great that you gave your teenagers the freedom to do their own experiment. Also nice to hear that some people do test negative through Enterolab...I was beginnng to think that everyone in the world had gs after reading about Dr Fine's work!

[confused]

Thanks....my head has been spinning trying to figure all of this out. It's appealing to just do it and go gluten-free for the time being as we piece together this family puzzle. Great that you gave your teenagers the freedom to do their own experiment. Also nice to hear that some people do test negative through Enterolab...I was beginnng to think that everyone in the world had gs after reading about Dr Fine's work!

i was thinking for a bit that everyone tested positive to also thro entrolab. But then i got to thinking, of course most of us are positive, because we do not get tested just because we want to, We have has issues that make us think we are problems with gluten, so of course we are going to be positive. Im sure if more people tested that never had C or D, then there would be more negative people with gluten.

paula