Saturday, June 27

Gluten Test Ban in Maryland and New York

My response to the email about EnteroLab's business ban in Maryland and NewYork.

I too have been watching this interestingly.

My suspicions are that this political maneuver has something to do with the preminent CD doctors in Maryland and NewYork who, from my listening to all of their comments about EnteroLab, disparage the results of EnteroLab because in spite of doing testing for 10 years, Entero has not bothered to follow the prescribed medical protocol to become reputable in "medical" terms.

This reputable protocol may require something like double blind testing--that is virtually impossible to do in the social environment of American medicine because of how we are diagnosed. I imagine that it involves testing the same number of individuals who do not suspect that they suffer from celiac disease as those who have the disease and how would Entero do that? So the accreditation suffers.

It's so complicated and confusing and there is a lot going on behind the scenes that is deeper than we in the celiac community understand. We just need better testing -- as so many of us are sero-negative. Unfortunately, the frustration mounts for us as our desperation increases. People are dying (Cousin Connie of esophageal cancer) while we wait.

Best wishes with your response. If you want diagnosed, use another address in another state. That is my recommendation.


Anonymous said...

Enterolab has been making a LOT of money for the past 10 years (or more) "testing" people without a shred of peer reviewed evidence. I don't blame doctors at major celiac centers for not accepting enterolab results. Why should they? The doctors that are doing REAL peer reviewed research can't seem to find a 100% accurate test for celiac, and yet enterolab claims that kind of accuracy. Wouldn't you be suspicious of those kinds of results? Anyone can claim anything they want about their "testing"---but the proof is in the research--research that enterolab does not want to publish.

Celiac testing is not something that can be decided by fiat--the fact that everyone is happy with their enterolab results does not imply accuracy---it merely confirms that A LOT of people want to believe that they have celiac disease, and enterolab gives the people what they want.

Terina said...

Dear "Anonymous"

#1 Entero does come back with neg results.

#2 CD is big business--also for those exclusive docs who are inflexible for innovation.
#3 Those same docs still push a "Gold standard" for testing that is impossible to do. (six more weeks of hell after going GF for six months?)
#4 Gastero's outside CD based "clinics" have no dispute with Entero? These docs cling to those results when my neighbor Alexa comes back with neg bloodwork and positive biopsy. What then?
#5 Entero also includes a gene tests that are "thus far" indisputable.
#6 There still is no way to do this research (see my comments.) I watch Alba Therapeutics in OK City struggle to start any kind of CD blind testing. They are unsuccessful. It can't be done.
#7 People believe in their results because they feel good from the GF diet. DUH! Otherwise, they would stop eating GF--because of the difficulty.

Let's go back to the real issue that I think you and I must have in common. Why are we putting so much credibility in an ancient diagnostic practice? Let's get more research and find out why so many are seronegative?