RE: Re: Gene test

[Guest guest]

As I mentioned in my earlier post about Dr

Gray and my un-diagnosis…..

When he tested me for genes I did NOT have

the genes for CD (2 & 8), but since I was already GF and not very willing

to go back to gluten for 3+months to do a further challenge and biopsy, he

could not diagnose. He was not specific about whether it was ‘impossible’

to have CD. He seemed to imply that it was highly unlikely but did not say it

was 100% not possible.

Could the gene test have been wrong? I know

that labs are certainly capable of mistakes. Maybe I am one if the exceptions

to the gene rule or maybe I have extreme gluten intolerance or allergy. All

I know at this point is I still get every typical symptom of CD when I get gluten’ed

(headache, gas, stomach cramps, the big D, eczema, and more+). In 97’ before

going GF, I had all the CD symptoms – chronic D, gas, vomiting, nausea, much

weight loss, and much more..)

So as I have said before…Does it

really matter if I have CD or gluten intolerance? I just can’t eat it!!! My

body revolts and is damaged when I do. Maybe I am better off in one way because

I don’t have to be categorized by the medical system as having a disease

that affects my mortality stats for health and life insurance.

From: [mailto: ] On Behalf Of misswelch02

Sent: Thursday, May 08, 2008 11:19

AM

Subject: [ ] Re: Gene

test

I guess what I would mainly be wondering then is if

the HLA test comes back showing I don't

have the appropriate background genes (type 2 or type 8 are what he tested

for), then is it

most likely that I wouldn't have CD? I know positive markers don't necessarily

mean you have

CD, but from what I've read absence of these two markers means you can't have

it.

>

> In a message dated 5/7/08 9:02:00 PM, homekew@... writes:

>

>

>

> if a gene test can determine with 100% accuracy if you have CD or not,

> why is it not the

> first test run?

>

[Guest guest]

I thought I had read of a recent study saying that other gene alleles are being explored as potential additional causes of celiac, however I cannot locate that study, nor do I know whether any results were found.

From Wikipedia:

A genetic test report stating DQ2 negative AND DQ8 negative reinforces a medical diagnosis that you do not carry the celiac disease gene. Unfortunately, a negative Celiac Disease report can be construed to mean that gluten is not a source of your problems. WRONG! All it teaches is that you probably do not have flattened villi! You still can have gluten intolerance with severe symptoms and risk of organ damage.

There are documented medical cases of celiac disease and the skin equivalent of celiac disease, dermatitis herpetiformis (DH) in individuals who have tested DQ2 and DQ8 negative. A prognosis that if you are DQ2 and DQ8 negative you are unlikely to have celiac disease or risk ever developing it, cannot be made with 100% certainty.

From http://www.kimballgenetics.com/tests-celiacdisease.html:

Approximately 92-98% of patients with celiac disease carry DQ2 while the remaining 2-8% of cases carry DQ8. Early diagnosis by antibody testing, DNA testing, and small bowel biopsy is critical.

Hope this helps!

From: [mailto: ] On Behalf Of misswelch02Sent: Thursday, May 08, 2008 11:19 AM Subject: [ ] Re: Gene test

I guess what I would mainly be wondering then is if the HLA test comes back showing I don't have the appropriate background genes (type 2 or type 8 are what he tested for), then is it most likely that I wouldn't have CD? I know positive markers don't necessarily mean you have CD, but from what I've read absence of these two markers means you can't have it. >> In a message dated 5/7/08 9:02:00 PM, homekew@... writes:> > > > if a gene test can determine with 100% accuracy if you have CD or not,> why is it not the> first test run?>