6 replies to this topic

[mamamonkey]

Has anyone done the genetic testing through Enterolab? My insurance company and I are going round and round and round about the genetic testing that my GI doc ordered. The Enterolab price isn't bad, so I am considering going that route if I can't get anything done with the insurance.

[frieze]

Has anyone done the genetic testing through Enterolab? My insurance company and I are going round and round and round about the genetic testing that my GI doc ordered. The Enterolab price isn't bad, so I am considering going that route if I can't get anything done with the insurance.

Before you get the testing, consider what, if any, difference it will make in you choices...

[mamamonkey]

It won't make any difference in my choices. I will still be gluten free for the rest of my life.

I want to know b/c I have a child and no one in my family has ever been dx with celiac. I also want to know b/c then I can encourage them to be tested for celiac too (my GI thinks my mom should be tested since she has osteoporosis and had autoimmune hyperthyroidism). This is purely for informational purposes. Not to guide any treatment decisions.

[frieze]

It won't make any difference in my choices. I will still be gluten free for the rest of my life.

I want to know b/c I have a child and no one in my family has ever been dx with celiac. I also want to know b/c then I can encourage them to be tested for celiac too (my GI thinks my mom should be tested since she has osteoporosis and had autoimmune hyperthyroidism). This is purely for informational purposes. Not to guide any treatment decisions.

are you a biopsy proven celiac? If you are, and your genes comeback negative....wouldn't be helpful. In the usa, they generally only test for two, in europe they test for more than that.

[kvanrens1]

We have had the gene testing for our daughter through Enterolab.  It was helpful for us to know that she does not have the main celiac genes and fits with her negative celiac tests.  Her official diagnosis is non celiac gluten intolerance.

The test is a quick swab of the inside of the cheek and not invasive.  Enterolab does not provide subunit info.  Our daughter is DQ7 and DQ9.  Some research indicates that DQ7.5 may be a celiac gene but we did not get that level of information from Enterolab.

[gatita]

DQ9 is also now being linked to celiac: http://www.ncbi.nlm....pubmed/22342873
And: http://intimm.oxford.../12/8/1157.full
Here's the plain English version: http://celiacdisease...l/g/Hla-Dq9.htm

To the OP, I believe Enterolab's gene test is not as in-depth (ie. sub groups like DQ 6.3) as some of the more costly ones, but it does test for the basic celiac genes. Fine has this theory that some other genes point to non-celiac gluten sensitivity, but most experts say there is no test for that yet.

[mamamonkey]

are you a biopsy proven celiac? If you are, and your genes comeback negative....wouldn't be helpful. In the usa, they generally only test for two, in europe they test for more than that.

EGD and biopsy were done at 5/6 months mostly gluten free (meaning the occasional cheat and not paying any attention to CC). Biopsy showed interstitial lymphocytic infiltration which was nonspecific, but could indicate partially treated celiac. This combined with my gluten-free diet response is what led the GI to dx celiac. So I guess so, sort of??

GI doc has an appt to do a peer to peer review for the insurance. I doubt they are going to reverse their decision. Discussing with DH whether or not to do the testing through Enterolab.