Possibly Gluten and casein Intolerant...

[Tessa]

Hi my dear friends,

My husband´s daughter has been having health problems for a while and I have always suspected about gluten...(her mother has thyroid disease and diabetes...)
But, at first she refused to admit that she could have a problem...
After having been admitted into the ER several times with diarrhea, vomits, etc... She has changed her mind now...

What has surprised me a lot is that the doctor has prescribed a blood test (very complete one) to check any intolerance to gluten, casein and lactose... But also a test for gluten and casein similar to Dr. Fine´s... A stool test! But Enterolab has no test in Spain yet...

When she mentioned to the doctor that I had to do the test in the US... He answered that they were modern and had it now available for their patients (it is a private clinic)...
Is this possible?
Will it be reliable?


Love
Tessa

[ant]

Dear Tessa,

they were modern

I hope this is the start of greater acceptance for stool tests, even without Dr Fine publishing.

Best, ant

[tex]

Hi Tessa,

I'm sorry, but as far as I know, Dr. Fine holds international patents on all his tests, and he has not licensed any laboratories anywhere in the world, to do any of those tests. The only lab doing those tests is the one in Dallas, Texas. There is a laboratory in Italy that has duplicated his process in their own facility, and they published a research paper describing it, but they do not do any commercial testing, (since Dr. Fine's discovery preceded theirs).

There are numerous other labs that sell stool testing kits, to test for gluten antibodies, and anti-tissue transglutaminase, probably all over the world, but these are totally different from the tests that Enterolab uses - they use an older, inaccurate method, and the results are totally unreliable. I've seen several reports by laboratories that tested these kits, and none of them have ever found the results to be useful. Here is a report that was published in the British Medical Journal, by a German research laboratory, for example, and look at their conclusion:

Neither stool test was suitable for screening for coeliac disease in children with symptoms.

Here's the research report:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1352053/

These test kits are the reason why so many doctors, (at least in the U.S.), do not trust stool testing. These tests are worthless.

I wish I had better news.

Love,
Tex

[Tessa]

Thank you for telling me, Tex.

I will keep an eye on her tests. They are going to be carried out at an expensive (and important) private clinic here, who - as I mentioned - have presumed about having it... She was very excited about the possibility of getting the stool test done as she was afraid not getting the result on the blood test... Even though, I doubt it. She has many symptoms. Could already have affected here in a way that the blood test could be possitive. We´ll have to wait and see.
She will get the results on December the 2nd. If they are negative, I will tell her that the stool test is not reliable...

Ant, I wish they had them too, but as Tex mentioned, unfortunately it does not seem to be right...

By the way, I forgot... If the blood test results are positive (that´s an option too), would it be a good idea to test her son and daughter?

Thank you,
Love
Tessa

[tex]

Tessa,

Yes, as you say, the blood tests might be positive, if she has significant small intestinal damage. Since the blood tests should be inexpensive, and easy to do, it probably would be a good idea to test her son and daughter, if her test result is positive.

You are very welcome.

Love,
Tex

[Rosie]

Tex, I noticed that the research report was relatively recent, 2006, and Dr. fine has been doing these tests for many years It's too bad that Dr. Fine's test wasn't included.....it might have provided some solid evidence for it's accuracy. But I suppose that since the researchers were in Germany, they wanted to test the kits used there. And of course, there may have been political or other reasons to ignore Dr. Fine's test........

Rosie

[tex]

Rosie,

I could be wrong, but I get the impression that they were only interested in testing kits that could be used on-site, (as in a doctor's office), rather than tests that are done at remote laboratories. Only one man in the world does the testing at Enterolab, (according to their claims, anyway), and he holds a PhD, (presumably in chemistry). That's probably why their test results are so accurate and reliable - errors due to inconsistencies between the judgments of various operators, are totally eliminated.

Tex

[Rosie]

Tex, I'm curious, do you know anyone who has had a tour of his lab? I wonder how many employees there are, and what sort of "assembly line they have. I'll bet that the Ph.D. doesn't open the tubs! I would envision a very strong chemical hood and lots of disposable gloves for the person who opens the tubs and takes the samples for initial processing. I also wonder what sort of volume they process, but since it's a privately held company that information probably isn't available. With the growing awareness of gluten and other food intolerances, he's poised to have a big increase in business.

Rosie

[Lucy]

Just wanted to mention here that there was a test done in Germany using the same technique as is used in the blood testing, but what they DIDN'T do was to figure out how to change the dilutions and one other thing (which I now can't remember) to make the test work on stool.

When Dr. Fine ran into this problem, it wouldn't work for him either, but their lab kept working to adjust the test (by figuring out the correct dilutions, etc.), and bingo, they came up with a winner.

That's why the German lab tests don't work, except they work on blood to the extent that they are used in traditional testing -- they just didn't do the work to make the test work.

Anyway, when that German test failed, some people were getting on some of the celiac sites saying that that meant EL's test was invalidated -- no way if they didn't make the necessary changes from the blood test methodology.

Hope this makes sense.

Yours, Luce

[tex]

Rosie,

I certainly don't know anyone who has toured that lab, and I can't answer any of those questions. Actually, it's difficult for me to visualize anyone having a desire to tour such a lab.

If I recall correctly, the upcoming weekend extravaganza in Dallas, includes a tour of the new lab facilities, doesn't it? That occasion may provide the opportunity to ask such questions, for anyone who attends.

Tex