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Celia Gene Test

kcmcc

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kcmcc Newbie
kcmcc
Posted

Does anyone have information on the Celia Gene test? We recently saw a ped. gastro and found out that other test should have been done on our daughter before she went gluten-free. The only test she had was the endomisial antibody test, and now that she is gluten-free I would have to put her on a gluten containing diet to have the biopsy done. She never had any symtoms of celiac. The test was done as a result of another problem she has. I am not comfortable putting back on a gluten containing diet, just to get the biopsy with the chance that she does have celiac. I don't think that is fair to her. The gastro dr. ordered the Celia Gene test. She said that if it comes back negative then does not have celiac, but if is comes back posative it does not mean for sure that she has it either.

Does anyone have any info on this test. As I understand it is fairly new.

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Brooke Fried Newbie
Brooke Fried
Posted

I just got off the phone with the celiac research center in Chicago. I was thinking about going there for a biopsy even though I live in florida. I spoke with a nurse who gave me lots of info. The gene test only tells you that you are in a group of people that may have the disease. It is not as clear a test as the biopsy. What they said about the biopsy is right. You have to eat things that are bad so they can look at the intestines and see the damage. Without eating bad things there is no damage, so it won't really tell you much. They say you have to eat gluten for 8 weeks before taking the biopsy which can be very difficult, but it's also very important. And it makes people more strict when they know for sure that what they have is really celiac. it's good to know for sure. That's why I want to do it. You don't have to eat a lot, just a bite of toast every day or anything similar. They recommend a food you don't particularly like so you don't develop any negative feelings.

I am too old to see the famous doctor there, he is a pediatrician (18 and under), but he is known for celiac care. Dr. Guandalini. But you can have the tests anywhere.

Hope that helps.

B

Does anyone have information on the Celia Gene test? We recently saw a ped. gastro and found out that other test should have been done on our daughter before she went gluten-free. The only test she had was the endomisial antibody test, and now that she is gluten-free I would have to put her on a gluten containing diet to have the biopsy done. She never had any symtoms of celiac. The test was done as a result of another problem she has. I am not comfortable putting back on a gluten containing diet, just to get the biopsy with the chance that she does have celiac. I don't think that is fair to her. The gastro dr. ordered the Celia Gene test. She said that if it comes back negative then does not have celiac, but if is comes back posative it does not mean for sure that she has it either.

Does anyone have any info on this test. As I understand it is fairly new.

cherie012 Apprentice
cherie012
Posted

Mason just tested positive for 2 of the celiac genes. the letter states that it is used to RULE OUT celiac if it is negative. Since his was positive, and he has symptoms, we did the scope. Results are pending... For the scope you have to have the gluten, for the blood test looking for the genes, you do not.

Mayam Apprentice
Mayam
Posted

Hi,

Myself and my oldest daughter, who is now 5 1/2, were diagnosed 2 years ago. My middle child had bloodwork done around the same time as our biopsy, she was around 20 mos. Some of her bloodwork came back positive so she also had a biospy, which came back negative. I considered it inconclusive due to her age. I was also not clear on if the ped. GI biopsied more than one part of her intestines. I also have a 14 mo. old son. At our house we are all gluten-free, even my husband who is not a celiac.

I had been wanting to do a genetic test and pay for it out of pocket. However, at one of my celiac support group meetings someone told me about a blood test that runs all the tests you should have to determine celiac disease and if it comes out negative they will automatically test for the genes. I had the test done on my son and middle daughter. Of course their antibody levels were normal since they are gluten-free. They automatically tested their genes and my daughter has two genes and my son has one. I think it was called Celiac Plus panel or something like that. The test is done through Prometheus labs.

I too refuse to put my children on gluten to have a biopsy done. I saw what happened to my oldest before she was diagnosed at 3 1/2 and I will not make my children sick, at least while I'm in control of what they eat.

If your child's test reveals they do not have the gene, they will never develop celiac disease. However, if they are like my kids' tests you will know that they may develop celiac disease sometime during their life.

I think that it is a personal choice as to how to proceed if you receive results that your child does have the gene. (I don't think you stated but if the EMA was positive and the gene is positive it seems that it is assured that your child has celiac disease). I for one, will not give my children gluten and possibly make them sick, especially when they are children and developing so rapidly. When my two younger children are older, at some not yet determined date, I am going to allow them to eat gluten and then observe them. We can worry about their reaction at that time.

Hope this helps you out a bit,

Rachel

daughter age 5

daughter age 3

son age 14 mos.

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