Scam or not? www.enterolab.com

This site was recommended to me by another member of Model Mayhem, and believe me it was not asked for. It looks to me to be another scam since I've been tested several times for Celiac and never had the test results show a positive. It's been nine years since I had my last colonoscopy, but that came back negative as well. I'm a life-long lacto-ovo vegetarian and I'm not about to give up wheat when there's no proof that's a cause and I'm definitely not sure that this site is on the up-and-up.

Shouldn't my gastro specialist have access to these types of tests? If not, why not?

Looking to hear from anybody who has a knowledge of biology (I'm guessing that's the specialty that would be able to de-quack this for me) and whether or not I should bother with trying to get my insurance to pay for this test.

Reading one link it looks like they even claim a LOT of things can be cleared up by cutting out certain things if you're Celiac positive. Everything from Autism to IBS. Which just makes it look like a whole bunch of woo to me.

Any advice from people who know about this would be much appreciated.

Thanking you in advance,

Molly

mollyblack said:

This site was recommended to me by another member of Model Mayhem, and believe me it was not asked for. It looks to me to be another scam since I've been tested several times for Celiac and never had the test results show a positive. It's been nine years since I had my last colonoscopy, but that came back negative as well. I'm a life-long lacto-ovo vegetarian and I'm not about to give up wheat when there's no proof that's a cause and I'm definitely not sure that this site is on the up-and-up.

Click to expand...

I'm a physician and I had a look. It may be on the up-and-up, but you do not need the test. I looked at the data backing up the test and it has a low specificity, which means that most of the positive tests will be false positive when used as a screening test (i.e. how it would be used in you). Screening tests are only useful as a way to select people who should have a more definitive test. Since you may have already had the more definitive test, performing a screening test is pointless.

My husband is a gastroenterologist and I'll ask him about it when he gets home.

Linda

I can get an expert opinion on this over the weekend. But at first glance I'd say this isn't woo. It may be wrong, but it isn't woo. It's not at all hard to find pubmed references for the people and research involved. It appears to be a new and unproven test but well within science.

Let me give you a bit of info from my own family history. My little brother has Celiac disease, and it was discovered after he got a bad stomach flu as a child (~2 years old) and didn't seem to recover (in other words, persistent diarhea for many days on end). It was not a subtle thing for him.

Flash forward to about 8 years ago, and my mother started getting persistent gastrointestinal problems as well, following a bout of stomach flu. It slowly gets worse over time (months), and she gets sick of it and makes an appointment to get it checked out. Knowing the family history, she figures she might as well cross one item off the list of things for the doctor, and goes on a wheat-free diet. Surprise-surprise, her problems clear up. She's got Celiac disease too. But symptoms never kicked in until well into her adult life, and only after getting a bad GI flu. A few years after that, her sister (my aunt) goes to Thailand, gets sick on the food there, and ends up exhibiting Celiac symptoms as well.

So: celiac disease is genetic. But there's an environmental component to it as well. It seems that it's often not enough to just have the genes, you can be fine with gluten until you get sensitized to it. And you get sensitized to it (if you have the genes) by being exposed to gluten after some trauma (ie, a GI infection) to the intestines. I might have it, but if I do I'm not sensitized.

The test is not worth doing if you don't have symptoms (regular diahrea in response to eating wheat). If you've got Celiac disease and you've been sensitized, the difference between being on a wheat diet and a wheat-free diet is NOT subtle. If you've got Celiac disease and you're not sensitized to it, you can keep eating wheat as long as you're not getting diarhea. The only thing you really want to be careful about, if you suspect you might have it but aren't sensitized, is to avoid wheat and gluten for about a weak after any time you get diarhea. The trick, though, is that there's gluten in a lot of products you don't really think about as having wheat content, including stuff like Rice Crispys (they use a wheat flour coating), Ketchup (wheat-based vinegar), and most soy sauces. So it's possible to think you're on a gluten-free diet (because you're not eating bread or pasta) but not actually be.

If you're worried about having Celiac disease, rather than spend money for a test, I suggest looking up some Celiac web pages to get advice on foods to eat which are gluten-free, and spend about a week on a truly gluten-free diet. If Celiac disease is what you've got, chances are it will make a very noticeable difference.

http://www.sensibleceliac.com/ -- my partner's website. He has celiac.

I asked a GE friend about this tonight and she had several opinions.

She seemed fairly convinced that anyone with unexplained symptoms that resemble Celiac ought to try a gluten free diet unless there was some good reason not to. She's convinced lots of people can be gluten intolerant without a positive Celiac test. And she thought a colonoscopy wasn't even a good way to rule out Celiac.

She had a variety of thoughts on the web site but they boiled down to: It's probably legitimate pioneering, unproven, science. And probably not necessary for you or anybody quite yet.

So, for whatever over the internet medical advice might be worth, the take home message is try the gluten free diet after talking to your own doctor.

Okay, so it's not woo (necessarily) science, but is this test something that has been proven to show if somebody has the issues it claims to be able to indicate? Should my insurance cover it (I'll call them on Monday and ask, but if somebody here has any information on that I would be thrilled to know - I have a PPO with an already paid up deductible) or should I go back to my Gastro specialist and ask them to request it?

I don't get diarrhea after I eat gluten or wheat and when I've gone on week long white rice diets with only filtered water to drink that's not changed anything with my IBS or bloating or Fibromyalgia issues. So I would think that would cross me off that list?

Definitely want to rant about one thing though...I'm sick of people I never met or just met or meet through the internet trying to give me advice I haven't asked for since usually they have no clue as to what the symptoms are or what doctors I've seen or tests I've undergone (or even, to be honest, what woo things I've tried). It frustrates me to the extreme. But if I don't ask here and it's something that's legitimate and I should test for and I pass it up, that's not smart. That's just closed minded.

Thank you to everybody who has answered so far. You've given me enough to start with. If more people who know about this chime in, I'll be quite pleased to triangulate a position on what to do next. Other than, I mean, going to this place or harassing my Gastro to do their test (which I KNOW she'll disrespect me for since we've already gone over the Celiac thing twice now).

RecoveringYuppy said:

And she thought a colonoscopy wasn't even a good way to rule out Celiac.

Click to expand...

The gold standard is a biopy of the small intestine. Which, if I understand correctly, involves inserting the instrument from the other end than a colonoscopy.

I'm undecided. I didn't see any woo, and they use the technical terms correctly as far as I can tell. I'm a little leery of gluten related stuff in the first place; so I might not be a really good person's word to take for it. But please be careful with your money. And be careful what actions you take based on what they tell you.

Terry said:

The gold standard is a biopy of the small intestine. Which, if I understand correctly, involves inserting the instrument from the other end than a colonoscopy.

Click to expand...

Yep. But my doctor friend seem to think that even that test was catching things a bit later than what might be optimal. Without commenting directly on the website in question, she thinks there are better diagnostic tests on the horizon.

Sorry about the unsolicited advice but it kind of goes with the territory. The doctor I talked to thought a gluten free diet was the most important thing to try. But it does sound to me like you've addresed that from what you said here:

mollyblack said:

...when I've gone on week long white rice diets with only filtered water to drink that's not changed anything with my IBS or bloating or Fibromyalgia issues. So I would think that would cross me off that list?

Click to expand...

Yeah, that sounds to me like it would be gluten free unless the rice was treated or contaminated somehow. If you go to the FAQ page for the web site you're asking about it says this:

One final note. Sometimes people experience dramatic improvement of symptoms and feeling of well-being after beginning a gluten-free diet. If the improvement to health was dramatic following removal of gluten from the diet, then this in and of itself is a positive diagnostic test (and perhaps the ultimate test).

Click to expand...

So if you're really confident your diet was gluten free for long enough then it sounds to me like these tests aren't likely to help you. So if this recommendation just came to you through the rumour mill you're probably safe in ignoring it.

but is this test something that has been proven to show if somebody has the issues it claims to be able to indicate?

Click to expand...

I think I can tell you now that this particular test isn't "proven". It appears to be founded on good science, the scientist behind it appears reputable, but it's still experimental. It will likely be years before we know for certain what the value, if any, of this test is. The doctor I talked to yesterday thinks it's a "promising line of research". She thinks there's quite a bit of merit to the idea that gluten sensitivity goes unrecognized in a lot of people.

I'll tell her about the rice diet you've done and ask what she thinks.

As I ramble on ...

Terry said:

The gold standard is a biopy of the small intestine. Which, if I understand correctly, involves inserting the instrument from the other end than a colonoscopy.

Click to expand...

Well I've had two endoscopys (or is that endoscopies) and the last one was the same time as the colonoscopy. If I go through either one again, the doctor has already said they'll do the same thing (it's easier to cleanse the insides and do it all in "one go") but since I doubt they'll find anything I haven't gone for the third and second of each respectively.

Thanks to everybody who has given me some insight into this. Possibly woo, possibly not. Legitimate doctor at least with a plausible test.

I'll talk to my Gastro specialist when I get the nerve up to deal with her again. She makes me feel like a hypochondriac and it's annoying. Especially since the last person I knew that got treated that way died of bone cancer (her funeral was our honeymoon). I don't think I have cancer mind you, I just mean when you have illnesses that they can't figure out (though getting the Fibromyalgia diagnosis helped a lot) it's annoying for both the doctors and the patient.

And I'm sick of tests. I feel for people who have it worse than I do (and I know that there's plenty). I just don't want a possible woo test for something and I don't know how to respond to this unasked for help.

+ =