Stool Testing--recommended?

[RoseRobin]

I've read about the stool testing done by Enterolab. Has anyone done this? Is it truly more accurate/ worth doing? Is it a difficult test to complete In terms of , ahem, awkwardness of acquiring the sample, etc)? Thanks.

[karenhockley]

I've never had the stool test done but as for collecting the sample it's quite easy. place plastic wrap across the toilet bowl close the lid then do your job! Good luck I hope this helps a bit.

[Traveller]

I did the Enterolab test a few months ago. It's not difficult at all to do. From what I recall, they send you all you need. The stool sample collector is a plastic bowl that fits over the toilet bowl. After collecting the sample, you put a provided cap on the plastic bowl, freeze it, put it in a provided biohazard bag, put the bag in a provided shipping box, and sent it UPS. For the genetic test, you swab your cheek with the swabs they provide, and ship those back in packaging they provide. A couple weeks later they e-mail the result. As the ads for an office supply store say "That was easy!"

Whether it's worth it or not depends on what you want out of it. If you want it to support a doctor's decision, you probably should ask your doctor how they would consider it.

[Ginsou]

I've also done the Enterolab stool test. Plastic wrap is not used, a special plastic bowl is used. It took me about 3 tries before I was able to get an acceptable speciman to send.....there can be no urine in the sample, so if you are female, it may take a bit of juggling and trying the procedure over again. Simply wash the bowl thoroughly and wait for the next opportunity. Eventually you will succeed.

The test was worth every penny.....positive results for gluten, dairy, soy. I've had digestive problems most of my life, and now I know why.

After almost 2 years of being gluten free, I am now at a point where I can eat a Subway sub or Sonic Burger every 10-14 days with little discomfort. My next experiment will be to order a club sandwich at the Village Inn Restaurant. At last, now I can eat out with family every now and then.

Funny thing is, my Nurse Practioner accepts the test results without question. My gastroenterologist isn't so sure, she wants me to go back to a gluten diet and have another blood test done for celiac, because the first test was negative. No way.....I'm now pain free and feel great.

[RoseRobin]

I've also done the Enterolab stool test. Plastic wrap is not used, a special plastic bowl is used. It took me about 3 tries before I was able to get an acceptable speciman to send.....there can be no urine in the sample, so if you are female, it may take a bit of juggling and trying the procedure over again. Simply wash the bowl thoroughly and wait for the next opportunity. Eventually you will succeed.

The test was worth every penny.....positive results for gluten, dairy, soy. I've had digestive problems most of my life, and now I know why.

After almost 2 years of being gluten free, I am now at a point where I can eat a Subway sub or Sonic Burger every 10-14 days with little discomfort. My next experiment will be to order a club sandwich at the Village Inn Restaurant. At last, now I can eat out with family every now and then.

Funny thing is, my Nurse Practioner accepts the test results without question. My gastroenterologist isn't so sure, she wants me to go back to a gluten diet and have another blood test done for celiac, because the first test was negative. No way.....I'm now pain free and feel great.

Thanks for the information; that does help.

I'm a a little surprised, though,a t your remarks that you do now sometimes eat gluten, perhaps twice amonth. I was udner the impression that those who are gluten intolerant or celiac must follow an absolutely gluten-free diet for the rest of their lives or risk intestinal, and perhaps other, damage. People here talk about ferreting out the slightest amounts of "hidden" gluten in condiments or spices, for eg. May I ask how you do manage to eat gluten anyhow? Were your positive results re gluten telling you that you were g. intolerant, but not actually celiac? Thanks for any help--trying hard to figure out my son's problems.

[Nancym]

Thanks for the information; that does help.

I'm a a little surprised, though,a t your remarks that you do now sometimes eat gluten, perhaps twice amonth. I was udner the impression that those who are gluten intolerant or celiac must follow an absolutely gluten-free diet for the rest of their lives or risk intestinal, and perhaps other, damage. People here talk about ferreting out the slightest amounts of "hidden" gluten in condiments or spices, for eg. May I ask how you do manage to eat gluten anyhow? Were your positive results re gluten telling you that you were g. intolerant, but not actually celiac? Thanks for any help--trying hard to figure out my son's problems.

I think most of us realize that we do have to stay gluten free for our lives. I suspect people who go back on it are going to be ok for awhile but the damage will accumulate and eventually cause noticeable problems.

[sbj]

I'm a a little surprised, though, at your remarks that you do now sometimes eat gluten, perhaps twice amonth. I was udner the impression that those who are gluten intolerant or celiac must follow an absolutely gluten-free diet for the rest of their lives or risk intestinal, and perhaps other, damage . . . Were your positive results re gluten telling you that you were g. intolerant, but not actually celiac?

Hi Rose: I hope that you are able to figure things out for your son - I'm sure it is both worrisome and frustrating. I really would suggest a visit to a regular doctor and the standard celiac panel via blood testing. That's usually a good start. This can all be a little confusing but please note that there are differences between gluten intolerance and celiac disease. Here's what a recognized expert has to say on the subject:

"Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. It's a different story with gluten sensitivity and allergy. Some people can't tolerate a crumb, and others have a threshold that is such that you can tolerate a piece of pizza."

This is one reason I personally feel it is important to determine whether you have celiac disease or gluten intolerance. And I am sorry to say that a stool test simply will NOT be able to diagnose celiac disease. And there is no commonly accepted test to 'diagnose' gluten intolerance.

[RoseRobin]

Hi Rose: I hope that you are able to figure things out for your son - I'm sure it is both worrisome and frustrating. I really would suggest a visit to a regular doctor and the standard celiac panel via blood testing. That's usually a good start. This can all be a little confusing but please note that there are differences between gluten intolerance and celiac disease. Here's what a recognized expert has to say on the subject:

"Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. It's a different story with gluten sensitivity and allergy. Some people can't tolerate a crumb, and others have a threshold that is such that you can tolerate a piece of pizza."

This is one reason I personally feel it is important to determine whether you have celiac disease or gluten intolerance. And I am sorry to say that a stool test simply will NOT be able to diagnose celiac disease. And there is no commonly accepted test to 'diagnose' gluten intolerance.

I am confused! I thought that Enterolab promoted its stool test as being far more accurate than blood tests for celiac antibodies--ie, that such antibodies are more readily observable in a stool sample because damage shows up there sooner than it will be reflected in blood samples. According to them (or the dr who started Enterolab), by the time one can detect celiac antibodies in the blood, much damage will have already occurred in the digestive system--hence it's preferable, they say, to do stool tests.

However, you are suggesting that the blood tests are more accurate--which seems to be the opposite to what many people here think....? I keep hearing/ reading that the blood tests are notorious for producing false negatives--so my son's negative results on his test are not trustworthy. That was why I was inquiring about trying the stool test. Since it is important to know if one is celiac or "merely" gluten intolerant, what is the best way to find out? A gluten free diet should theoretically help those who are celiac or just gluten intolerant--so what do you do to pin down a diagnosis?

[Traveller]

I am confused! I thought that Enterolab promoted its stool test as being far more accurate than blood tests for celiac antibodies--ie, that such antibodies are more readily observable in a stool sample because damage shows up there sooner than it will be reflected in blood samples. According to them (or the dr who started Enterolab), by the time one can detect celiac antibodies in the blood, much damage will have already occurred in the digestive system--hence it's preferable, they say, to do stool tests.

However, you are suggesting that the blood tests are more accurate--which seems to be the opposite to what many people here think....? I keep hearing/ reading that the blood tests are notorious for producing false negatives--so my son's negative results on his test are not trustworthy. That was why I was inquiring about trying the stool test. Since it is important to know if one is celiac or "merely" gluten intolerant, what is the best way to find out? A gluten free diet should theoretically help those who are celiac or just gluten intolerant--so what do you do to pin down a diagnosis?

I've also heard that blood tests have a high false negative rate. Their value seems to be a low false positive rate. Both myself and a family member had inconclusive blood test results, and we both got diagnosis of Celiac; the family member by the traditional method -- biopsy -- and myself by the Enterolabs test (including genetic test), family history, and resolutions of symptoms on a gluten-free diet. We had different physicians, demonstrating (I believe) that what a physician uses to give a diagnosis is up to the physician. That's why I indicated that the value of the test is based on what you want out of it. If you want it to add to the overall knowledge your physician has in making a diagnosis, it may be worth it (it was for me). If the physician will not accept the Enterolab test, then the test's value may only be to you.

As to why it's helpful to find out if your son is celiac or merely gluten intolerant, a post I read in a different thread gave a quality of life answer. The post indicated that Celiac's get a reaction even if they eliminate 99.9% of the gluten from their diet, while the intolerant may be able to tolerate up to a slice of pizza. I don't know if that's correct or not, so you can put as much reliance in it as anything else you read on the Internet. The one reason for finding out that means the most to me, however, is that Celiac's autoimmune reaction to gluten damages the small intestine and yields many negative future outcomes; gluten intolerance doesn't yield the same autoimmune reaction.

That's my thinking. Maybe the experts can give better answers.

[happygirl]

The test you are referring to does not diagnose Celiac.

[psawyer]

The Enterolab test does not diagnose celiac disease.

Persons with celiac disease are sensitive to gluten, and produce autoimmune antibodies when exposed to it. Zero exposure is an unattainable ideal. Wheat is ubiquitous in modern society, and as a result exposure to some small amount is unavoidable in practical terms.

Sensitivities vary from person to person. We all aim to avoid gluten entirely, but exposure to very small amounts is inevitable if you try to lead a normal life, and the majority of us manage.

[RoseRobin]

The Enterolab test does not diagnose celiac disease.

Persons with celiac disease are sensitive to gluten, and produce autoimmune antibodies when exposed to it. Zero exposure is an unattainable ideal. Wheat is ubiquitous in modern society, and as a result exposure to some small amount is unavoidable in practical terms.

Sensitivities vary from person to person. We all aim to avoid gluten entirely, but exposure to very small amounts is inevitable if you try to lead a normal life, and the majority of us manage.

Could you possibly help clarify what the value is of the Enterolab stool test? My son thinks his sinus issues worsen whenever he has wheat/ gluten, so he had the blood test for celiac, but it came back negative. However, it may have been a false negative as he may not have been back on gluten long enough (2 weeks after having largely, but not entirely, eliminated it for a few months). We're therefore trying to "narrow down" a diagnosis via other tests, along with eliminating gluten. I thought the stool test was more sensitive re detecting gluten antibodies, and that it could do so even after one had switched to a gluten-free diet (as they say on their website). Wouldn't such a test be at least helpful, along with a genetic test, in narrowing down the possibility of celiac vs gluten intolerance?

I certainly don't want to put my son through more tests pointlessly, but he's willing to try options if they could clarify his condition. Otherwise, won't he spend the rest of his life not knowing how serious his condition is?

Just as a side note: he finds that his sinus issues worsen whenever he is active/ exercising. Do celiacs find that their condition worsens during/ after activity?

[RoseRobin]

The test you are referring to does not diagnose Celiac.

The person who posted just above says she was able to diagnose celiac via the Enterolab test, along with diet, etc. Isn't the stool test more accurate than blood tests?

[happygirl]

The person who posted just above says she was able to diagnose celiac via the Enterolab test, along with diet, etc. Isn't the stool test more accurate than blood tests?

The company itself states it does not diagnose Celiac.

It may indicate some form of gluten sensitivity.

[Ginsou]

RoseRobin, since your son is agreeable to having testing done, I would have several tests done, especially the DNA test, if only for your own knowledge . I had a DNA test done and it was positive...double genes (gluten/celiac). Food allergy tests also showed multiple food allergies (including grains) in addition to the lactose intolerance I've had for over 30 years. The doctor/gastrologist who ordered the celiac panel test neglected to tell me that I was supposed to continue eating gluten. Since I was in so much discomfort and pain, I had stopped eating gluten, so that may be why the test was negative. Biopsy was negative, but I did have a problem in the lower intestines. Whether the problem is true celiac or gluten intolerance/multiple food allergies is not an issue for me...the important thing is, I am now well. For many years I was told I had IBS, diverticulitis, etc. with no real testing done to back up the (mis)diagnosis. Your son has many years ahead of him, getting a proper diagnosis is very important for his wellbeing in the future. I'm 67 years old, and since I have no small intestinal damage, I am thrilled to be able to eat out once in a while....on special occasions.