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6 Month Checkup, New Gi Doc And Gene Test

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My insurance changed so I now have a new GI. He is very knowledgable in Celiac disease. When we tried to get my records from Kaiser transfered over, they said they didn't have any record of my testing (seriously?) anyway since I've been gluten free for almost 7 months he decided to do gene testing on me for his own records.

 

I came up postitive for DQ2 and he also did my 6 month celiac blood panel which as expected my levels are good. I will have a follow up endoscopy next month to check on healing.

 

Soooo he strongly encouraged me to get my children gene tested since both of their celiac blood panels were negative, he says they are not going to show up positive because our household is gluten free. The only gluten they get is lunch and if we go out and they get hamburgers. I don't want to wait and see if they develop Celiac, I would never want to see them go through all the illness I've had to endure!

 

What is the Celiac communities thoughts about if children show up positive on gene testing?  Do you take them off gluten or wait and see if they develop it?

 

 

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My 13 year tested negative. I will not bother with a gene test. Odds are she has the necessary genes to develop celiac disease since I have it and my husband (who was never diagnosed but has been gluten-free for 13 years based on the advice of my allergist and his GP). But will she develop it? Who knows? We will just keep an eye out for intestinal symptoms, anemia and other possible celiac disease symptoms in the future.

She eats gluten mostly out of the house in her school lunch and in restaurants. I would not eliminate gluten from her diet on the chance she might someday develop celiac disease. I think she gets enough gluten so that she can be tested at anytime. That includes cereal bars for snacks and prepackaged Goldfish, crackers, cookies, PB and J frozen sandwiches and buttered noddles that I cook for her (that and Mac cheese in a dedicated pot are the only gluten foods that I cook with caution! ). Plus, those gluten foods are consumed outside the house for my piece of mind!

I guess you could do the gene testing to stop future celiac disease testing, but I am not sure science really has the celiac disease gene identification process perfected.

That's my two cents.

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We took our son to a pediatric GI doctor for celiac-like symptoms but all this tests were negative. We asked about the gene test but he said that based on the fact that I have celiac and my husband's heritage, he would guess that both our kids have the gene. He said that certainly doesn't mean they will have Celiac but he thought the genetic test would be a waste of money because he was sure it would come back positive and not really tell us anything. Lots of people have the gene but it's never activated.

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Just my 2 cents:

I would not put a child on a gluten free diet based solely on the genetic tests.  Approx. 30% of the population has at least one of the genes that predisposes them to Celiac but only about 1% actually get it.  There are also some who have Celiac but do not have either of the genes.  So in my opinion, the genetic tests are fairly useless.

However, being that the predisposition to Celiac is genetic I do think it is well worth it to have your kids tested for Celiac via the blood tests.  And I also think it would be a good idea for them to continue to get tested at least every couple of years - sooner if they develop any potential symptoms.

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