Genetic Testing

[Braunson's-mom]

My son has been gluten-free for over 2 years and he has other problems. We were sent to Atlanta to a dr and the dr wanted other gi testing done. We live in Kansas and we saw one gi dr in KC and he said to put him back on glutten and then test to see if the testing came back positive. I told him he was crazy. So we went to see a different gi dr and he suggested to genetic testing. He wants to see if he carries the gene for celiac disease. He never had positive blood test or biopsy but since being gluten-free he has grown and no more diahrea. Please help me I don't want to put him through unessessary testing. Thanks

[ENF]

My son has been gluten-free for over 2 years and he has other problems. We were sent to Atlanta to a dr and the dr wanted other gi testing done. We live in Kansas and we saw one gi dr in KC and he said to put him back on glutten and then test to see if the testing came back positive. I told him he was crazy. So we went to see a different gi dr and he suggested to genetic testing. He wants to see if he carries the gene for celiac disease. He never had positive blood test or biopsy but since being gluten-free he has grown and no more diahrea. Please help me I don't want to put him through unessessary testing. Thanks

Yes, the genetic testing is easy, quick, affordable and conclusive. It doe not indicate active Celiac, just the predisposition for it - as well as gluten sensitivity. Dr. Peter Green, of the Columbia Celiac Disease Center in NYC, recently mentioned it on the "View" segment that he appeared on and suggested that it is a good test alternative for children that are related to people with active Celiac. I had it done last year, as you can see below I have the Celiac genes from both parents. My wife has never had classic digestive symptoms, but has gone gluten free as a result of her test.

[Christine E]

We've wanted to get the other family members tested for the genetic marker, but found it was expensive, at least at Enterolab. Is there a less expensive way to get the test done?

[happygirl]

Yes-

Through your doctor. They often use Prometheus Labs, and insurance is more likely to cover it since it is a lab they use often. The genes are HLA DQ2 and HLA DQ8. Tell your doc to run the Celiac gene panel through Prometheus Labs.

I have an "inconclusive" diagnosis, but remain gluten free. I also had a dr. who "tried" to put me back on gluten. My answer was, if I'm having other troubles that you can't fix, why would I add another problem back IN?

Laura

[hathor]

Speaking as someone who had the genetic testing, now I don't see the real point of it. What I know now is that practically everyone in this country not of Asian heritage either has the so-called celiac genes (some think there may be others) or those for gluten intolerance. So it comes down to -- is a person reacting to gluten or not? Your son has been off gluten too long for any sort of testing to show actual (not just possible, as with genetic testing) celiac or gluten intolerance. Two years off gluten is too long, even for Enterolab.

If you really aren't sure, you can have him try some gluten. Fairly shortly you will have your answer. It seems unnecessary to go through the ordeal of enough gluten for long enough to have positive test results, unless you have some reason for needing an official diagnosis.

I don't see how even finding a celiac gene would change anything. A third of the population has such a gene. It doesn't establish celiac. Conversely, not having a celiac gene doesn't mean that someone can't have a bad intolerance to gluten.

[confused]

Well I use to believe knowing if you had the gene or not was a very good indicator of knowing if u can get celiac. I had thought only ones with the gene would test positive for celiac. But now knowing what i do know from personal experience, i dont think the gene test really helps at all. I do not carry the celiac gene, but i tested positive for celiac threw blood work. They wanted to make me do an biopsy and i refused, My blood test came back very positive for celiac and that was good enough for me.

I really believe the diet is the best and most accurate test of them all.

paula

[Braunson's-mom]

I agree with almost everything. I guess I should explained alittle bit more. I know my son is glutten intolerant and we are not going to take him off the diet yet. He responded very well to the diet. We are seeing if he carries the gene and is more likely to have accually have celiac disease. He is very sick with sinus problems and his b and t cells are low in his immunsystem and since the gi tract and immunsystem go hand in hand then we are trying to ellimiante the posibility of all gi problems (other than celiac disease). The reason we are doing gene testing is because I refuse to put him back on glutten. If it comes back negative that he doesn't carry the gene then the dr said he needs to remain on the diet because of an allergy or celiac disease or glutten intollerance. Then we are also looking for other gi problems.

[mommida]

My experience won't help you make a decision for genetic testing. It should help you gain perspective.

I was diagnosed with IBS and lived with that until my daughter was born. There were some things in hindsight that were Ceiliac symptoms when she was an infant. When solid foods were introduced, she began having the same reactions to food as I was having from the same meals. We bagan testing for Celiac. It was a mess from the very beginning with ignorant doctors. My daughter was hospitalized for dehydration, I refused to give her gluten to continue testing and do the biopsy after the positive Celiac panel. Her genetic test came back positive for both DQ2 and DQ8. My test came back negative. We contacted Prometheus labs for the inconsistencies. Their response was, I must have been in the 2% the test would not catch, my daughter may have mutated the genes, and every blood test has a 30% error rate. The test was supposed to be 98% accurate, at least that is what we were told before getting our blood drawn.

My opinion, the body's respnse is the most conclusive test. The rest of the testing is only the medical field's way of trying to read the information of the body's reaction. Genetic testing is still "new" and has flaws that need to be worked out.

L.