[DebraR]

Hello, I'm new to this forum but have visited a couple times in the past.

Let me start out by saying I'm a registered dietitian (RD) specializing in women's health and PMS/PMDD. Many of my clients are testing negative for Celiacs via serologic testing and biopsy but positive on fecal tests. Long story short I've encouraged them all to have the genetic testing along with the antigliadin testing through Enterolab and every one of them (n=8) has tested positive for double-HLA DQB1. According to Dr. Fine and Dr. H are indicators for gluten sensitivity.

My question to you all here is:

Have any of you received a double HLA DQB1 gene test from any other lab other than Enterolab? I'm absolutely positive this is a correct because I've notice Dr. Fine has used a couple different labs (American Red Cross is the latest). But, is there any other lab giving this kinds of information as related to gluten sensitivity?

Thanks.

Debra

[KimS]

Hello and welcome (back) ,

I'm not sure about the labs but did want to respond to the gene ideology.

And it may come across sounding like I'm anti-Dr. Fine, which couldn't be farther from the truth. However, there have been people with NONE of the 'required' genes who also respond well to a 'tailored' diet.

Also, if people don't want to go to the expense of gene testing (although I fully support those who do want to) then they should know that it really isn't *required* for them to try the diet. However, I've seen many people remove only gluten and wonder why they don't get better.

Every person that I've helped do a Total Elimination Diet (who has gone through the process honestly) has had major health improvements. Of course, people only come to me, generally when they've either exhausted all their other resources or are facing some pretty brutal medication or surgery.

This same thing is being discussed over at BT - so I suppose I'll copy this here too:

There could be other genes involved with gs anyway... there are really more questions than answers involved in genes and molecular reactions:

Is gliadin the only mechanism that people react to? Probably not... It's hard to find a pen when you don't really know what a pen looks like... or when you're looking for an elephant.

Are Marsh III lesions the true indicator of gs? Of course not, even minor damage should count... but it doesn't... yet.

Is a tTG level of 17 an indicator that gluten ingestion is okay? Probably not, but currently we 'say' it is because they decided on the number '20' in a boardroom somewhere.

Sorry, I just hesitate allowing people to get too hung up on what we 'know'... because a lot of info. is just 'lacking too much info'.

[DebraR]

Originally Posted by KimS

Hello and welcome (back) ,

I'm not sure about the labs but did want to respond to the gene ideology.

And it may come across sounding like I'm anti-Dr. Fine, which couldn't be farther from the truth. However, there have been people with NONE of the 'required' genes who also respond well to a 'tailored' diet.

Hi KimS-Thank you for your quick reply,

When you say NONE of the required genes are you talking about DQ2 and DQ8, the genes known to the traditional medical community? Or are you talking about the other lesser known genes DQ7, DQ3....etc.

I'm more or less interested in finding out if anyone has been tested for the Double DQB1 or DQ1 and told they were gluten sensitive by any other lab besides Enterolab. Some of the other commercial Genetic testing labs will comment on the DQ2 or DQ8 but- do they indicate the specific gene or just say sorry you've tested negative for the Celiac gene or gluten intolerance gene.

And yes, the gluten-free diet has been very successful in helping these particular women.

[KimS]

http://brain.hastypastry.net/forums/...ysprune=&f=152

You may want to ask over at BT also. Some people only read there.

I do remember, a few years ago I think, the question of... Does everyone test pos. for gs with Dr. Fine?.... Really, most people did... but I seem to recall one woman that didn't. I wish I could speak to it with confidence... but it was so long ago that it is only a very vague memory right now. I was really not all that interested in genes at the time... but her post definitely left me with the idea that rushing into the expense of gene testing might be a questionable endeavor.

I seem to remember that it made her feel a little uncomfortable because she really did feel better on the diet.

Do ask at BT as she might be lurking there... or even posting regularly as I forget completely who it could've been.

[DebraR]

Thanks Kim, I'll ask over there.

[NancyM]

I've seen quite a few people on the glutenfreeforum report back with a negative enterolab test but Dr. Fine says something like 70% have gluten sensitivity. I attended a lecture by Dr. Fine, the man is pretty brilliant but I wish to heck he'd get something published on his testing! I think he's afraid. I would be. When 98% of the world thinks gluten sensitivity is very rare and you've got a lot of data to say otherwise, people will be skeptical.