Enterolab

[no-more-muffins]

My BIL is a pathologist and was very skeptical when my sister was telling him about Enterolab. He said that he thought the whole NCSG was a scam and that the lab was a scam. (Sounds like the general medical opinion huh?)

I don't think the lab is a scam, nor do I think that NCSG is a scam. (I guess people who aren't sick don't have reason to believe it.)

I did wonder about your experiences with the lab though and whether you feel like they do an accurate job of determining gluten and other sensitivities. It is a huge change to go gluten free, and it has such a big impact on kids if they have to do it too. Do you completely trust the results and their definition of the normal ranges?

[Polly]

Hi again NMM,

Like your BIL, I am a physician too (pediatrician) but I happen to have MC and NCSG, along with other food intolerances, so I feel qualified to respond to your post. You hit the nail on the head by saying that those who are not sick have the luxury of poo-pooing (pun intended) tests/treatments that work. My traditional celiac blood test was negative, and my Enterolab stool test for antigliadin antibodies was positive. I can tell you that I am EXTREMELY sensitive to the tiniest bit of gluten. I have been able to maintain remission now for almost 9 years....with diet alone. My GI is Hopkins-trained and has been no help at all to me, although I must say that she is interested in my experiences with diet and has shared them with some of her patients. I believe I would still be sick had I not found this website and learned about Dr. Fine.

Enterolab is fully certified by all appropriate federal and state agencies. Also, I don't believe Dr. Fine has ever had an official complaint lodged against him.....at least he has never been sanctioned for any malpractice or ethical breaches. (I haven't checked his record for a year or two, but I did previously and it was unblemished then). I think this speaks VOLUMES - and those who have used his services almost always sing his praises.

It will actually be easier if your entire household is GF. Don't worry. I know it seems overwhelming now, but it IS doable. And, it seems there are new GF products every day - quite an increase from when I was initially diagnosed.

Love,

Polly

[JLH]

Even my GI, who wouldn't even think of writing a prescription for me to be tested at EL, was going to tell a patient of hers who wasn't responding to meds to go GF! (She finally did write it after I put up quite a fight. I believed Tex, Polly and the PP as soon as I started reading the info on this site.)

I trusted EL because of the PP and their experiences and didn't hesitate to order the tests. I'm a believer.......

[JLH]

"Thanks everyone. She has had a really good couple of days and I think all of the Thanksgiving oops have made their way out of her system. It is just amazing though how well this gf diet works. If she accidentally eats something with gluten she gets clumps of mucus in her diarrhea. If gluten is not eaten at all, the stools are formed with no mucus. I just can't believe this isn't more widely known among the medical community. Camryn's Dr. suggested writing her up as a case study. I would do it if it meant that it would help other kids/adults that have this disease.
_________________
Mommy to Camryn - 2 1/2 years old - dx'd with LC 8/08"

[JLH]

Camryn-------------------HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6). Both of these genes predispose to gluten sensitivity.

[tex]

Hi no-more-muffins,

Since Polly is a doctor, has MC, has had testing at Enterolab, and is in remission by diet alone, her opinion carries a lot of weight, IMO.

The information that Joan posted above is actually a quote from a post by another member, the mother of a very young child, who was diagnosed with MC. Here is where she introduced herself to this board:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8274

And here is where she posted the Enterolab results for her daughter, Camryn:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8503

Here is a complete list of all her posts, if you want to read more about her daughter's case. To read a post, just click on the link that follows the word "Subject:" in each search result:

http://www.perskyfarms.com/phpBB2/searc ... n%27sMommy

If you read her later posts, it will remove any doubts you might have about whether or not Enterolab, and the NCGS concept are legitimate.

Also, for an unsolicited opinion from a GI doc who has "seen the light", due to the recovery of one of our members, please read the first post in this thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9886

FWIW, in case you might suspect that everyone receives positive test results for every sample submitted - I'd like to point out that my own tests for soy, egg, and yeast, were all negative, and sure enough, those foods do not bother me, nor did they ever. (I did cut out soy and yeast, while I was recovering, just to be on the safe side, but I never was able to detect any reactions to them).

Ask your BIL what proof he has that NCGS does not exist, (there has never been any research to document that claim) - the guys in the white coats just assume that it is the case, and so they continue to perpetuate the myth. They should be ashamed of themselves for such unprofessional behavior, and I hope they're accumulating a good supply of herbs and seasonings, because at some point, presumably in the not-too-distant future, they will find it necessary to "eat a lot of crow". Considering the vast size of the cohort destined to partake of that "feast", and the fact that the crow population is already under considerable pressure, due to the West Nile Virus, this could possibly push the crow population to the brink of extinction, and the EPA will almost surely find it necessary to add them to the endangered species list.

Tex

[JLH]

http://jccglutenfree.googlepages.com/genetictesting

For your B-I-L

Sorry, I like to raise the flag. LOL He might want to study this site before he makes blanket statements about EL etc.

[tex]

Tex

[no-more-muffins]

You guys rock. Really. And Polly, your opinion carries tons of weight.

And Tex, I can't wait for the day when they all have to eat it.

I think that all kids should be tested for GS before they start kindergarten... I mean really.... We do pku testing for babies and make them have the goo in their eyes for stds but they do nothing for GS and it is SO prevalent.

After reading about the accreditation of EL I don't doubt their credibility. They are accredited by the same national agency that accredits many of the labs that my husband is affiliated with (he is a laboratory computer system analyst as well as a medical techologist who used to perform lab testing himself). He was convinced when he saw that they were fully accredited.

Random off topic question:
my blood ttG was 0. Do you think my EL results for gluten could still be postitive? Zero sounds pretty negative... (about as negative as you can get eh?) Could I develop MC from some other protein or food intolerance?

[tex]

I think that all kids should be tested for GS before they start kindergarten... I mean really.... We do pku testing for babies and make them have the goo in their eyes for stds but they do nothing for GS and it is SO prevalent.

Great point - that's an excellent analogy. I looked it up. Apparently, research shows that for PKU, the reported incidence ranges from 1 per 13,500 to 1 per 19,000 newborns. That's not exactly what I would call common.

http://www.ncbi.nlm.nih.gov/books/bv.fc ... tion.20940

On the other hand, we know that fully developed celiac disease is found in somewhere between 1 per 70, and 1 per 140 people in the general population, (interestingly, more recent tests always seem to show an increasing prevalence). Pinpointing a figure for gluten sensitivity, (non-celiac gluten sensitivity), is kind of tough at present, but suggested numbers range from 35 to 50 percent of the population in the U.S., for example.

http://www.amazon.com/Gluten-Connection ... 1594863873

In view of what these numbers suggest, one has to wonder about the motives of the people who make the decisions concerning which screening tests should be used, and which should be ignored.

The serum tests are very low on sensitivity. I wouldn't assign any relevance to a zero result on that test. The stool tests are at least 300% more sensitive.

Could I develop MC from some other protein or food intolerance?

There are many potential triggers for MC. Any form of enteritis can trigger it, (bacterial infections, parasites, viruses, and possibly other forms of trauma). Many medications can trigger it, (NSAIDs are one of the most common causes, but certain PPIs, SSRI's, and a few other meds can cause it, also). It is claimed that stress in itself has not been documented to trigger MC, but it is known, for example, that stopping a long-term smoking habit can trigger MC, and we have a number of members who can vouch for that, from personal experience. And, there are food intolerances, of course, but in most cases, the food intolerance genes are triggered when the MC gene is triggered, not before. There are others that I cannot think of at the moment, and surely, there are various other triggers that are currently unknown, and/or undocumented. IOW, there are many ways to develop MC, and precious few ways to control it.

Tex

[Gas Bag]

It is claimed that stress in itself has not been documented to trigger MC, but it is known, for example, that stopping a long-term smoking habit can trigger MC, and we have a number of members who can vouch for that, from personal experience. And, there are food intolerances, of course, but in most cases, the food intolerance genes are triggered when the MC gene is triggered, not before. There are others that I cannot think of at the moment, and surely, there are various other triggers that are currently unknown, and/or undocumented. IOW, there are many ways to develop MC, and precious few ways to control it

This has always been in the back of my mind, the stress connection. Mine started almost 3 years ago during an extremely stressful month of driving my dear old mom back and forth over a 100 miles a day to the hospital where my step-father was dying of cancer. It was a nightmare. The poor man was in advanced stages of spinal/brain cancer. He had the exact same cancer that claimed my father over 35 years ago. It was just down right freaky. So not only were we dealing with the on-going nightmare, but had so many thoughts about the past.
I have had other terrible things happen to others I love and other stressful situations in my life without any IBS type thing happening. I just thought it was strange that MC happened at that time in my life.

I have since in this last three years had some other horrible tragedys occur without a flare up, so maybe that shoot holes in the stress connection. But still it gives one pause for thought.

I found this thread because I am starting to think I might have to have some testing done at Enterolab, it would be better than " just guessing" about what might be bothering me. I am actually feeling pretty darn good now, but a bit bloaty, but Norman has been with me for almost two weeks now. And I haven't had any gluten for going on two weeks as well. I know I can't feel back to normal, what's that? over night.

I like most of us, had a blood test and a biopsy, or whatever it was they do in conjunction with an endoscopy/colonscopy, to check for Celiac's and of course it came back negative.

Deb

[tex]

Deb,

I have a hunch that in some cases, stress may provide the "straw that broke the camel's back", to trigger MC, when otherwise, it might not have been triggered, if the stress were not present. Something like that is difficult to prove in an experimental setup, though, so we may never know for sure, if we rely on research to prove it.

I agree that it might be good to know whether or not you are intolerant to gluten, and possibly some of the other most common food intolerances, since you might still be accruing damage to your intestines, even though you don't show symptoms, most of the time. (There are a lot of asymptomatic celiacs, in the same boat).

Tex

[Gas Bag]

Deb,

I have a hunch that in some cases, stress may provide the "straw that broke the camel's back", to trigger MC, when otherwise, it might not have been triggered, if the stress were not present. Something like that is difficult to prove in an experimental setup, though, so we may never know for sure, if we rely on research to prove it.

I agree that it might be good to know whether or not you are intolerant to gluten, and possibly some of the other most common food intolerances, since you might still be accruing damage to your intestines, even though you don't show symptoms, most of the time. (There are a lot of asymptomatic celiacs, in the same boat).

Tex

We're gonna need a bigger boat!!

After being on here and seeing/reading what everybody is dealing with it does make me wonder more and more about food intolerances. I am really a babe in the woods as far as MC is concerned. I am glad to be here.

Deb

[tex]

I am glad to be here.

We're most definitely glad that you're here, also.

Tex

[Gas Bag]

Thank you Tex.

If I knew of anybody else on this side of the screen with MC, I'd sure tell them about this forum. I've never met anybody else with MC, although I suspect a few of my relatives had it. And my mom has had on-going D problems for years, but she had part of her colon removed and has had problems ever since.

Deb