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sandyg

Has Anyone Been Through Genetic Screening?

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Hi There,

I'm a mother of three (ages 5, 3, & 2) and was just diagnoses with celiac last month. My 5 and 3 year old had blood tests, which thankfully came back negative. The pediatric GI doc would not screen the 2 year old. He said there is a risk for false negatives in kids under 3. Anyway, he told me to plan on having their blood drawn again in 3 years.

So, my question is. . . do my children have to be screened every 3 years forever? At what point do they run genetic tests? I understand a positive gene test doesn't necessarily mean that they will develop celiac. However, a negative gene test would let them off the hook for this every 3 year test. Does anyone have any experience with genetic testing before I ask the doctor.

Thanks in advance for your help!

Sandy :)

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I am new to all of this but my 23 month old was just diagnosed with celiac this month. She has her blood work done and it was off the chart postive and will be going for a biopsy in 5 days. I was not told she would have to be tested again. Now she will be having blood work done because she has a Anemia disorder . I think I spelled that right?? Hope this helped. Also have a GI biopsy that will give the closest 100% yes or no to celiac!!

Erica

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The gene test can be done with three different labs. Kimball Genetics and Enterolab both do a gene test using a swab. We went with Enterolab ourselves because it was so non-invasive for our little one, and it was cheaper, but it took two weeks to get the result. Kimball Genetics has a faster response time (24 hours within receiving specimen). Prometheus also offers the gene test via a blood test. It also very accurately can test for the subtypes of your genes. And yes, if your child tests negative for the gene, most likely they will never develop Celiac Disease, although food intolerances, including gluten intolerance, could still happen (not that I'm trying to tempt fate for you at all; just letting you know that if you ever see a problem that is Celiac-like and your child does not have the gene, a food intolerance could still be the culprit).

The follow up tests your doctor is talking about is pretty standard. If your children have the gene, you should do follow up testing regularly to ever see if they are starting to react to gluten. Yes, having the gene does not mean you will get the disease, but since there's a family history, it's more likely than if there isn't the history. And some doctors would even argue that the blood screening test (not the gene test) is inaccurate for kids under 7. And if their diet is "gluten-light" because you're feeding them that way (this is what happened to us because we were feeding our kids gluten free so we were by default, too) the test would be inaccurate as well. So your child could have the disease and even react very negatively to gluten but not test positive because there isn't enough "damage" and antibodies to register.

And often after being diagnosed with Celiac Disease, they want to regularly do the blood screening test to make sure your antibodies levels remain low. If they are high at all, it could mean your getting gluen somewhere and therefore still damaging your intestine. If you're not, this could be an indication of another problem occuring.

Hope that helps!

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The gene test can be done with three different labs. Kimball Genetics and Enterolab both do a gene test using a swab. We went with Enterolab ourselves because it was so non-invasive for our little one, and it was cheaper, but it took two weeks to get the result. Kimball Genetics has a faster response time (24 hours within receiving specimen). Prometheus also offers the gene test via a blood test. It also very accurately can test for the subtypes of your genes. And yes, if your child tests negative for the gene, most likely they will never develop Celiac Disease, although food intolerances, including gluten intolerance, could still happen (not that I'm trying to tempt fate for you at all; just letting you know that if you ever see a problem that is Celiac-like and your child does not have the gene, a food intolerance could still be the culprit).

The follow up tests your doctor is talking about is pretty standard. If your children have the gene, you should do follow up testing regularly to ever see if they are starting to react to gluten. Yes, having the gene does not mean you will get the disease, but since there's a family history, it's more likely than if there isn't the history. And some doctors would even argue that the blood screening test (not the gene test) is inaccurate for kids under 7. And if their diet is "gluten-light" because you're feeding them that way (this is what happened to us because we were feeding our kids gluten free so we were by default, too) the test would be inaccurate as well. So your child could have the disease and even react very negatively to gluten but not test positive because there isn't enough "damage" and antibodies to register.

And often after being diagnosed with Celiac Disease, they want to regularly do the blood screening test to make sure your antibodies levels remain low. If they are high at all, it could mean your getting gluen somewhere and therefore still damaging your intestine. If you're not, this could be an indication of another problem occuring.

Hope that helps!

That's the best explanation I've had from anybody! Thanks for the info. I will definitely have to check out the labs you mentioned.

Sandy

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Just because your children tested negative via blood test does not mean that they do not have a gluten problem. You can have total villi damage & still have a negative blood test.

I suggest the gene test thru Enterolab.com because they test for the celiac genes & the gluten intolerant genes. IMO the gluten intolerant genes are the worst, especially if you have double DQ1 because they come with the other food intolerances, allergies, neurological problems AND the common celiac symptoms, including villi damage. Not all positive biopsy people have DQ2 or DQ8.

And you do not NEED a biopsy if you have positive blood work. But if you want one..

there again better to test kids (& adults) thru Enterolab.com, it is not invasive & way more accurate & you can tell if you are absorbing foods etc. & they also test for a dairy problem which is common.

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My daughter was tested positive via blood tests and biopsy a little over 1 year ago. When she tested positive we tested my son. His blood tests were negative but at the GI suggestion we had a gene test done. His came back positive. As stated earlier, the GI told me that this means he carries the gene but may never develop celiac. However, she also told me that if his sister has it and he is positive for the gene, the likelihood is high and that I should "keep a close eye on him for any changes or trends". I have done that and in the past 9 weeks I have seen a huge change in him and some tendencies that Katharine demonstrated as well. We have an appointment with the GI in 2 weeks to have him checked out. I had blood tests done at the ped a few weeks ago that came back negative however the GI felt that it was warranted for a full check up. I believe they are waiting so they can do another blood test to see if there is an upward movement in antibodies. Anyway without the gene test I may not have the ability to push the issue with the doctors.


Melissa

Diagnosed Fibromyalgia March 2007

Mom to Katharine, 5 years old diagnosed Celiac Disease Sept 2006

Peanut allergy

Michael 3 years old diagnosed infant reflux at 6 weeks

Dairy Soy allergy until 22 months

Neg blood tests and biopsy Feb 2008

Positive gluten-free dietary response

You may have to fight a battle more than once to win it.

Margaret Thatcher

Fall down seven times stand up eight.

"I've decided that after air, water, and dirt, the next most common substance on the planet must be gluten!"

Toni Nolte, Overland Park, Kansas

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