Confused About Testing & Diagnosis

[Judithg]

Okay, I had blood tests for antibodies and small bowel biopsies done 8 years ago before I was gluten-free and they were negative. Recently I had the tests done again--still negative. But I was gluten-free at the time, so I'm not sure they were accurate. Now I've had HLA tests done, which I believe detect the gene for Celiac. Those were negative. So does this absolutely mean that I am not Celiac? And since I still know that I am gluten sensitive, does that mean I just have an intolerance? Will it develop into celiac disease? Or is that impossible since the HLA tests were negative?

I find that doctors are not good at explaining any of this stuff, and I'm so confused. And I'm still sick much of the time. The doctors now just want to say it's IBS, but I feel like IBS is a symptom, not a diagnosis.

I'm considering the Enterolab tests, but I wondered if it's worth it based on my previous test results.

Any advice would be appreciated!!

Thanks,

Judith

[Alexolua]

Yeah, I'd say Enterolab is worth it. My biopsy was negative. My blood was a maybe, but his tests came back saying yes. For the genes too.

You might want to check out this Open Original Shared Link.

A quote from it:

Currently the only two genes that are being called Celiac Markers are the DQ2 & DQ8(or is it DQ3 subtype 8?). Anyhow, there may come a day when these other gluten intolerance genes are also recognised as Celiac markers.

Which basically, believe means.. that the genes your doctor tested for didn't show up, but there could be other genes that your doctor didn't check for, that Enterolab does, that could cause you to have problems with gluten.

Enterolab test for genes with a cheek sample. Also tests for anti-bodies in stool. Blood tests can't always pick up on the anti-bodies, if enough aren't in the blood.

The only problem you may run into, is how long have you been gluten-free? I believe someone said you could be up to a year gluten-free for the testing for Enterolab to work, but I might be wrong there. You could try emailing them, the address is on their website. So far every time I've sent them an email, got a response back the next day.

So does this absolutely mean that I am not Celiac? And since I still know that I am gluten sensitive, does that mean I just have an intolerance? Will it develop into celiac disease?

Well I guess you could say you're not Celiac. Celiac if I'm right, means you have damage to your small intestines from gluten. But a gluten intolerance can easily develop into Celiac, and both are treated the same way. So some people consider them the same thing. Which in a sense they are.

But if you do feel better when not eating gluten, I'd say just say off gluten. Or if you want some testing done too, then contact Enterolab. They do also check for other food intelorances if you had other questions too.

Good luck! =)

[gf4life]

If you have been gluten-free for many years it would affect the results of stool testing through Enterolab (unless you were looking to check to make sure you are 100% gluten-free), but it would NOT affect the results of the gene test. For $150 you can find out if you have any of the lesser known gluten intolerance genes. You already know that you don't carry the two most common Celiac genes, but a doctor I trust very much once told me that there has not been enough genetic studies done for Celiac to know that they have found all of the genes responsible for the disease. so if you obviously react to gluten then I suggest you stick with the gluten-free diet. Maybe eventually they will come up with some tests that will give us straight answers without having to consume gluten (might as well be having us all drink poison, its about the same for us!).

God bless,

Mariann

[Alexolua]

Oops, yeah.. being gluten-free has no effect on Gene testing. Guess I should been more specific there.. thanks Mariann. =)