Online Celiac Testing A Scam?

[AnneM]

I am new on here and this is my first post. I am confused about online testing for celiac. I was diagnosed in 2005 with celiac, my sisters did online testing, sent in a stool sample and they were told how many celiac genes they had and that they were gluten sensitive. I was just at my gastros for my yearly checkup and i mentioned the online stool sample testing to my doctor, she said "i hope they didn't pay alot"...she went on to tell me it is a scam, the only way is a blood test and endoscopy.

Can anyone shed some light on this? I am confused, people seem to rely on this online testing alot, I was wondering if it is real or just a money making scam?

[mftnchn]

If you search the forum there has been discussions about this here before.

Basically Enterolab does not have the respect of the medical community because the doctor who developed the testing hasn't published his findings. The test is the same as used on blood samples but used on stool instead. Enterolab never claims to diagnose celiac. The doctor has really good qualifications and is respected in his field.

[Susan-in-NC]

I don't know about the online testing but wanted to add that next week my son will be tested by his Dr. They are running full blood tests and will also do the stool testing. His Dr. said this will be the most comprehensive testing available, to rule out or check for "other" problems. I should add that he does have an IgA problem involving his kidneys that was Dx 5 years ago.

Susan

[gfpaperdoll]

I have been watching this for 3 years now, I happen to have been dxd thru Enterolab & a lot of people in my family & friends. & I have seen that now some M.D.'s are actually using them.

I am sure it will be like anything else, the medical community is going to be divided on this. Dr Fine in conjuction with a couple other doctors have a new book in the works, I have heard.

I think your doctor was a little uppity to say it was a "scam". I wonder how much money people are paying her that never get answers to their health issues etc.

[AnneM]

Thank you all for your responses. I don't think of my dr as being uppity, I have complete confidence in my dr, he found my celiac disease right away, and is currently testing me and following up with me in every way. It seems to me that whoever would take the time to send out a stool sample has some problem going on. A person could just go to their dr and ask for a simple blood test to look for antibodies in the blood, for the cost of their co-pay. My children are all being tested asap, as my dr recommended they get a blood test.

My 3 sisters and 6 of their children did the online tests...they of course all came back the same exact result, gluten sensitive...it cost approximately$ 3,600.00 to get that result when they could have spent about $200.00, for a much more definitive result. Hmm...makes me wonder, but who really knows?

[AnneM]

Thank you all for your responses. I don't think of my dr as being uppity, I have complete confidence in my dr, he found my celiac disease right away, and is currently testing me and following up with me in every way. It seems to me that whoever would take the time to send out a stool sample has some problem going on. A person could just go to their dr and ask for a simple blood test to look for antibodies in the blood, for the cost of their co-pay. My children are all being tested asap, as my dr recommended they get a blood test.

My 3 sisters and 6 of their children did the online tests...they of course all came back the same exact result, gluten sensitive...it cost approximately$ 3,600.00 to get that result when they could have spent about $200.00, for a much more definitive result. Hmm...makes me wonder, but who really knows?

I am sorry, i forgot to add the more confusing part of this.....my 3 sisters were tested online, 2 came back as having 2 celiac genes and the other had 1 celiac gene, now my sister is thinking our father isn't HER father.....my sisters told me that in order to have 2 genes both parents have to be a carrier, so the whole family is in an uproar about this..i asked my dr about my genes he said we didn't test you for genes, so i don't know how many genes i have. Anyone have any knowledge on this?

[confused]

it is because each parent has 2 genes, and their kids get one gene from each parent. Some of the kids will get the celiac gene from each parent while some kids wont get the celiac gene from their parents. So this is not saying that your one sister is not your full sister. Its just that we all have different genes. Its just like any other gene, lets take eye color, just cause one sister has brown eyes like her dad doesnt mean all the kids will have brown eyes. I have 5 kids, and none of them have the same eye color, but that doesnt make them not brothers and sisters. Of course one of my kids is my step son, but all the kids have the same dad.

Just like i do not have the celiac gene but i tested postive threw enterolab, blood work and DH. So doing the gene testing on my kids will not be accurate. my step son does have celiac, so we are getting the other 4 tested this week. I know not all 4 will come back positive, but that doesnt mean they are not all my children.

I do not feel enterolab testing is a scam, since i was positive threw them and so was my step son and we both have celiac. I dont think doing an stool test is wrong. Some people just dont test postive threw blood work cause it is not accurate all the time. Stool testing IMO, is accurate. But enterolab does not try to confirm celiac, they just try to confirm you have an problem with gluten.

paula

[Guest Doll]

In *general*:

The main problems with stool testing is that you can get false positives even in healthy non-Celiac people. Also, there are multiple genes that dispose you to Celiac. Enterolab appears to tell people that they can test you for a "Celiac gene", which is just bad science. Just having an HLA type that *predisposes* to Celiac does not mean you actually have the disease. There are way more factors involved. Right now "accepted" science says that less than 1% of people have Celiac Disease (as per Celiac.com). Many people have certain HLA types that are common in Celiacs and are perfectly healthy. Enterolab gives the impression that the majority of the population has some form of "Celiac" if they propogate the use of "Celiac genes" as a method of diagnosis.

I personally think that online testing is questionable at best, and that you are better off just trying the diet if (and only if) you are unwilling or unable to go to the doctor for a proper Celiac screening anyway.

A stool sample at any random time can show any range of antibodies, or may not show any.

Here is a BMJ article that basically says that such tests are useless. Buyer beware is all I can say. Do your own research before you waste money. Enterlab knows that you must think you have Celiac, so they have little to lose by saying that you "gluten sensitivity". I would question any test that says that practically an entire family has Celiac. It does happen, but as this discussion showed, it would be rare for all 4 children of a family to have "Celiac", since they likely would not all inhereit the genes needed for Celiac to develop even if they had the same parents. Studies put the risk around 1 in 20. Enterolab makes it sound like this is common. My friend has Celiac, as does her grandfather. Her mother, sister, and 2 sons do not. I use her as an example because her family was tested after she was dx'd.

Open Original Shared Link

Autoimmune diseses affect only about 10% of the population. Many people are ill and sick because they eat unhealthy (trans fats, too many carbs, etc.), are overweight, and don't exercise, period. Many of their problems stem directly from all of the above rather than Celiac or autoimmunity. People who promote stool testing know that we are sick and unhealthy as a whole, and in my opinion, it's a big money grab. People think they have gluten intolerance, cut out the junk foods, eat better, lose weight, and then think they have Celiac and thank Dr. Fine. I dunno...

I'll say it again...I think more people are brainwashed by Enterolab then anything else....

[Jestgar]

From the article:

"Many paediatric gastroenterologists share our experience of receiving referrals with a request to do endoscopy on the basis of a positive stool test result."

Why is this a bad thing?

And:

"Even worse, children have been started on a gluten-free diet on the basis of positive stool test results alone."

Again, why is this a bad thing? Especially if it made them feel better?

[Guest Doll]

From the article:

"Many paediatric gastroenterologists share our experience of receiving referrals with a request to do endoscopy on the basis of a positive stool test result."

Why is this a bad thing?

And:

"Even worse, children have been started on a gluten-free diet on the basis of positive stool test results alone."

Again, why is this a bad thing? Especially if it made them feel better?

Well aside from this, if the mother just starts the kid on the diet and doesn't take them to doctor to see if anything else is wrong, I don't think it can be good. Furthermore, the kid may miss out on needed nutrients and calories on the gluten-free diet. Most gluten-free stuff is not fortified. It is also often higher in carbs and low in fibre (which can lead to overweight kids). The gluten-free diet is not always automatically healthier, although it often restricts many fast foods, etc.

My problem was that people may very well be being ripped off and misled.

[Jestgar]

Well aside from this, if the mother just starts the kid on the diet and doesn't take them to doctor to see if anything else is wrong, I don't think it can be good. Furthermore, the kid may miss out on needed nutrients and calories on the gluten-free diet. Most gluten-free stuff is not fortified. It is also often higher in carbs and low in fibre (which can lead to overweight kids). The gluten-free diet is not always automatically healthier, although it often restricts many fast foods, etc.

My problem was that people may very well be being ripped off and misled.

Your point is taken, but given the diets of much of the northern hemisphere, it's not valid. People feed their kids crap all the time. Also, given the expense of the substitute food, presumably most people gravitate towards a healthier gluten-free diet just to be able to afford it.

As for determining if anything else is wrong, very important point. However, how does additional testing to find out "what's wrong" compare to the additional damage caused by telling the parents to keep feeding their child gluten because the tests were negative? Wouldn't advising a gluten free diet while doing additional testing be more prudent in a patient who has a dietary response?

As for being ripped off, my guess is that most of the people that use those services are willing to pay because they haven't gotten any answers any where else. If they received more complete help from traditional testing/medicine they wouldn't be looking elsewhere.

[Guest Doll]

Your point is taken, but given the diets of much of the northern hemisphere, it's not valid. People feed their kids crap all the time. Also, given the expense of the substitute food, presumably most people gravitate towards a healthier gluten-free diet just to be able to afford it.

As for determining if anything else is wrong, very important point. However, how does additional testing to find out "what's wrong" compare to the additional damage caused by telling the parents to keep feeding their child gluten because the tests were negative? Wouldn't advising a gluten free diet while doing additional testing be more prudent in a patient who has a dietary response?

As for being ripped off, my guess is that most of the people that use those services are willing to pay because they haven't gotten any answers any where else. If they received more complete help from traditional testing/medicine they wouldn't be looking elsewhere.

I don't disagree that parents feed their kids crap. Everytime I see an obese baby I want to scream, "Hope you can deal with burrying your kid". Parents should know better, and that is a shame. However, oatmeal, and fortified whole grain breads and cereals are part of a healhy diet for non-Celiac kids. I guess if being gluten-free is the only way to get people to eat healthy and actually think about what they put in their mouth, then so be it.

I know that blood tests are not perfect, especially in kids, but they are not that inaccurate either. With the Enterolab tests, unless they diagnose *all* kids with gluten intolerance, there is a much bigger risk that they may also miss an actual Celiac case using stool testing. Stool testing is so inaccurate, you might as well flip a coin to get your dx.

All I am saying is that Enterolab cannot diagnose Celiac, and likely makes a lot of money off of people trying to convince them indirectly them that it can. Many people test negative through traditional means because they *don't actually have Celiac*, believe it or not. Those *especially* are the people that you see that never heal or feel better on the gluten-free diet.

If someone thinks that their kid is healthier gluten-free, and they are otherwise healthy, so be it. But I would not waste money on a invalid test to put them on the diet.

One downside to having a kid on a gluten-free diet *if they don't need to be* is the fact that they may always feel "different". They can't have pizza parties with their friends at school, have the Rice Krispie squares the teacher brought, eat popcorn at the movies (assuming it's CC'd), have a hot dog at the baseball game with dad, or head out to a local restaurant for a group date with friends. If your child actually HAS Celiac, these are just things that they will have to adapt to. But would you really want to subject your child to this if you didn't *have* to? No child should be made to think that they are "sick" when they aren't. It isn't healthy. I think this was what the article was most likely trying to imply.

[chrissy]

there is also the problem with the fact that enterolab does NOT test for total IgA levels. enterolab also will diagnose ALMOST EVERYONE with "gluten sensitive" genes----because dr. fine considers so many genes to be "gluten sensitive" genes that there is only a small chance that you WON'T have a gluten sensitive gene. also, enterolab will tell people that if they have positive antigliadin antibodies that they are having a reaction to gluten. this is not necessarily true. being constipated can raise AGA antibodies. there are even other conditions which can raise Ttg levels. it is probably not likely that someone will have raised Ttg levels and not have celiac, but it IS possible. celiac can be difficult to diagnose in some people, which is a really good reason to actually be SEEN and EXAMINED by a doctor when searching for a diagnosis rather than relying on a questionable, mail order blood test done in a lab by a doctor that has never laid eyes on you.

also, the gluten free diet is used for other things and can be a healthy diet-----which would only make sence that a certain number of people are going to feel better when they go gluten free----even if they don't have celiac disease.

[AnneM]

there is also the problem with the fact that enterolab does NOT test for total IgA levels. enterolab also will diagnose ALMOST EVERYONE with "gluten sensitive" genes----because dr. fine considers so many genes to be "gluten sensitive" genes that there is only a small chance that you WON'T have a gluten sensitive gene. also, enterolab will tell people that if they have positive antigliadin antibodies that they are having a reaction to gluten. this is not necessarily true. being constipated can raise AGA antibodies. there are even other conditions which can raise Ttg levels. it is probably not likely that someone will have raised Ttg levels and not have celiac, but it IS possible. celiac can be difficult to diagnose in some people, which is a really good reason to actually be SEEN and EXAMINED by a doctor when searching for a diagnosis rather than relying on a questionable, mail order blood test done in a lab by a doctor that has never laid eyes on you.

also, the gluten free diet is used for other things and can be a healthy diet-----which would only make sence that a certain number of people are going to feel better when they go gluten free----even if they don't have celiac disease.

OK maybe a better question would be, has anyone who tested with Enterolab ever had a NEGATIVE report back on gluten sensitivity, and the gene testing? ...negative result on ANYTHING?

[tarnalberry]

OK maybe a better question would be, has anyone who tested with Enterolab ever had a NEGATIVE report back on gluten sensitivity, and the gene testing? ...negative result on ANYTHING?

yes. this question has come up a number of times. some people have reported about themselves or their family members testing negative, but don't forget that there are two factors why we don't hear about many of these cases: the population sample that enterolab gets is anything but random - it's handpicked from people who are sick and desperate to know what's wrong, or related to someone who is, with an inheritable condition. secondly, people who test negative simply don't post on celiac boards and move on with their lives.

that's not to say I'm a fan of enterolab. I think that they are doing a great disservice by not publishing their work in peer-reviewed journals. (That's been "in the works" for three years, past the initial research stage. That's a tad long, though I admit my knowledge is not in medical journals but other science journals (and entirely second or third hand).) additionally, there's been some work in Italy on stool testing as a reliable way to diagnose celiac more accurately than blood tests, but I do not know how similar it is to the testing that enterolab does.