Enterolab--what's The Scoop?

[woolwhippet]

I am considering ordering the tests from enterolab. I am wondering if anyone had negative blood test and a positive enterolab result. I am also wondering which test I really need. Is it worth it to do the full gene/gluten/dairy or ???

Thanks!

[holiday16]

I am considering ordering the tests from enterolab. I am wondering if anyone had negative blood test and a positive enterolab result. I am also wondering which test I really need. Is it worth it to do the full gene/gluten/dairy or ???

Thanks!

I had a negative blood test, but tested positive through Enterolab. I know some people debate them, but for me I would never have known what was wrong without that test and it was the answer I needed after 7 years of being absolutely miserable. I still find it hard to believe I was as bad off as I was and the blood test still came back negative. I tested barely positive even through Enterolab and when I asked the NP that ordered the test about it she said some people just produce less antibodies, but it is not an indication at all of severity.

My dad, mother and brother did the test as well. My dad and brother tested positive and my mother tested negative. They also did the gene test and my brother and mother both have the DQ8 gene. My dad has a double DQ7 and he has seen improvement neurologically. I did not do the gene test and wish I had, but the only real reason would be to satisfy my curiousity as it really does not affect the diagnosis. We also found that my dd's stomach issues cleared up being gluten free so we determined without testing that she is gluten intolerant as well. My Dr. agrees with that because we had taken her in twice because her stomach hurt so bad and she was diagnosed with contipation, but when she went gluten free that resolved. It comes back if she has gluten and she will double over in pain.

[celiacgirls]

My younger daughter had several negative blood tests over the years but was positive with Enterolab. My older daughter and I then tested with Enterolab and were positive also. All of us feel much better gluten free.

I started with just the gluten antibody test for all of us. I ended up doing the full panel with the casein test for everyone. I tested my genes but haven't done my children yet. There really isn't a need to do it but I am curious.

I think the tests were worth it because I would never have tried the diet without it. I probably wouldn't have been as strict with my daughter's diet without the Enterolab test. I do think you could just try eliminating gluten (every trace) and see if it worked for you. The diet response is what ultimately convinced me.

[Pacer]

Holiday, you have a really supportive family that would go and do that testing. I have to say, DH's family is in total denial and tries to feed him bread when we visit.

"oh, you still got THAT?" LOL

Meanwhile, it would be a really helpful piece of info for future generations if they could know which side the celiac came from.

Heidi

[GeoffCJ]

I had a negative blood test, but tried a diet and saw dramatic improvement.

6-8 weeks later I did a endoscopy, which showed clear damage, but not clear Celiacs. I had been gluten free/lite for several months at that point, which I think explains the ambiguity. My silly Dr. didn't tell me I needed to eat gluten, and the first time I met the GI specialist was about 3 minutes before he put the camera down my throat. He asked if I'd been eating gluten, I said no, and he responded "well, this test is going to be of limited value". He still found areas that looked really raw/ugly, but not clear flattening. I think I was partly healed. He said the same, and suggested that I needed to stay gluten free. No idea what my charts say.

I did the enterolab. It came back positive for the antibodies, negative for casein/soy/etc. I have the double gene.

At this point I consider myself a celiac.

Geoff

[chocolatelover]

There are a great number of people who have negative blood work and/or a negative biopsy, and for many reasons...

Through a regular GI I tested negative with bloodwork and also had a negative biopsy. However, I tested positive through Enterolab, and also found out through them that I have double celiac genes. I also had a colonoscopy that showed lymphocytic colitis, which is highly related to celiac.

With those results in hand, I took them to a new GI, who diagnosed me as having celiac even without the positive blood work or biopsy (the combination of the three above factors, plus the fact that I had been almost completely off gluten for 4 months before the blood work and biopsy). Those results from Enterolab helped convince him that I need to be off gluten now and forever to not only feel better, heal the damage, and also reduce my risk of cancer. That was enough to make me go gluten free, and I feel 1000% better for it.

I found it extremely helpful to get tested through Enterolab--I would never have pursued things this far had I not done that. Which tests you do are up to you, but I definitely think it was worth it.

[par18]

Holiday, you have a really supportive family that would go and do that testing. I have to say, DH's family is in total denial and tries to feed him bread when we visit.

"oh, you still got THAT?" LOL

Meanwhile, it would be a really helpful piece of info for future generations if they could know which side the celiac came from.

Heidi

I agree it would be helpful if you could get anyone to listen to you. I got my mother gene tested (she and I have DQ2 but only I have had symptoms and was diagnosed with Celiac Disease) and we notified her side of the family. Basically no one really cared. Some I am sure have Celiac-type issues but all would rather blame it on something else. I would venture to estimate that for every one person who listens to what you have to say and may one day act upon the advice there are many who still want to spend a lot of money to hear it from a medical profession that is currently operating at a 5% diagnosing rate! Still I would suggest finding out which side of the family (if not both) could possibly have the gene.

Tom