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Another Blood Test

nephlim

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nephlim Rookie
nephlim
Posted

I met with my algergist the other day. I had made an appointment before my blood test came back positive for the antigens; we were still figuring it out. His wife has had celiac for 30 years, and after telling him my symptoms, he was not totally convinced. 1) the first round of antigen tests was neg, the second was positive. 2)Very Atypical symptoms and neg bioposy. 3)Posibility of bacterial infection. and lastly, the gastro never bothered to check for the gene that expressed celiac.

This one got me. Why DIDN'T they check that? It's the ONLY way to be sure, as it is a genetic conditon. It will take a few weeks to send the blood from Massachusetts to Texas, but I will know for sure. He said that there are two genes; either one alone is a 30% change, both is 60% (90% with my positive diet response). I guess that Irish and Mediterranean people are more at risk. I happen to be both, but we'll see.

Just thought I'd share this and see if anyone else has had a similar experience.

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Slackermommy Rookie
Slackermommy
Posted

I found this interesting, thank you for sharing.

I am sorry that I don't have anything to add though. :(

Rachel--24 Collaborator
Rachel--24
Posted
This one got me. Why DIDN'T they check that? It's the ONLY way to be sure, as it is a genetic conditon.

The gene test is helpful but I wouldnt say its the most definative test. For one thing there is a small percentage of biopsy proven Celiacs who do NOT carry either of these genes. There are other genes involved....which have yet to be determined.

Also a great deal of the population carries these genes and does not ever develop Celiac.

The gene test isnt usually ordered. If the bloodwork and/or biopsy are positive....and especially if the dietary response is positive.....there is no real need for the gene test.

I had negative gene tests...I ordered them myself through Enterolab.

Both gastro's I saw would not rule out Celiac based on gene testing alone...due to the fact that there are still undetermined genes.

Positive bloodwork and positive dietary response is enough for making the diagnosis.

Peta Explorer
Peta
Posted

I, like you, did not understand why everybody suspected of Celiac did not have a gene test taken automatically. I thought surely this would removed the need to be periodically tested for some people (those without the genes)?

But after visiting a specialist I now have a better understanding why the gene test is not standard.

My local GP referred my son to this specialist on the strength of the gene test. The specialist stated 'this is why the gene test should not be available outside hospital conditions'. She said that it was largely misunderstood by many in the medical field and that it was very complex, and as stated above by Rachel, it is not as straight forward as some may seem.

The gene test is a valuable bit of information when used in conjunction with many other aspects of Celiac Disease. It is not a diagnosis on it's own.

My son is DQ2 and DQ8, has classis symptoms, yet he does not have Celiac but has H. pylori (stomach infection) so often misinterpretation of the gene test can get in the way of a true diagnosis.

Best of Luck,

Peta

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