Enterolab Testing & Validity?

[ravenwoodglass]

As to the studies correlating fecal testing with feeling better, where are the studies correlating improvement on gluten-free diet in subjects who test negative for celiac disease using conventional testing? I think that system is just as flawed. And those tests cost a bunch of money too, it's just easier not to see it because insurance "pays" for it.

I wish I had know and been able to get Enterolab testing before I was diagnosed. Even with good insurance we paid over 17 thousand, that's not a typo, 17 grand in copays for tests, canes, braces and drug costs in just the last year before I was diagnosed. Since I am a blood test negative celiac doctors would look at the celiac tests and go 'nope you don't have it, keep eating gluten and let's do this test now and here are some more brand new to the market meds to add to your daily diet. Under $400 for a test to see if I was making antibodies to gluten sounds real good to me. I would give anything just to have had one of all those specialists tell me I should have tried the diet even though their tests were negative.

[Lisa]

As I have said, earlier in my post that Enterolabs can draw some emotional responses. But, as all replies here, they should be dealt with, with the greatest respect and courtesy. All posters should be allow to speak with respect and responded to with respect.

I have always stated, that if Enterolabs can be a piece of the puzzle for some.

Most of the submissions to Enterolabs are from people with digestive issues. They will find something. Make a wise and educated choice.

Moral of this story is, know your body and listen well. Make informed choices and don't pay anyone to draw a conclusion that you already know the answer too.

I wish you all well and good health.

[Lshetler]

Skylark, you're my hero. I used to believe in (and thought I had) multiple chemical sensitivity, intestinal candida, fibromyalgia, and all sorts of things that have been proven to either not exist or be psychological in nature. People don't know the dangers of anecdotal evidence and placebo.

If people are going to treat the scientific process like it's the bad guy and lift naturopaths and quacks on a pedestal, for transcending the need for research, then I don't know what to say. There are scam artists out there, and they are very good at seeming reputable.

Because the problem isn't just that they have no peer-reviewed research to validate their claims; it's that they act as if they do. It is highly IMMORAL for any scientist to market claims that are not peer-reviewed. There's a reason he didn't even make an attempt to validate his claims to the public, and it's not because science is evil. It indicates that there's no good science involved. Just look at the people who rave about homeopathy, and that's factually ineffective. They're just marketing water. I would bet anything that this is the same. Food intolerance test have been shown ineffective in every watchdog test performed. If it's good science it will become scientifically accepted, end of story.

[Marz]

You ask the exact question I'm asking. Where is the study correlating fecal AGA or anti-TG2 antibodies with feeling better off gluten?

Well done on raising this issue, Skylark. I'm also with the skeptics on this one - if they're finding these tests are picking up gluten intolerance, why is it not more highly researched and documented? Is it because they're afraid that other companies and laboratories might start also performing the tests? Or because proper scientific studies may show that this method produces too many false positives? Or just because it'll cost them money that they don't want to spend?

Having said that, I do believe that there is still a lot that scientists and ourselves don't know about. I'm hoping that more research grants will be given towards celiac disease research, but who are we kidding with such subtle symptoms, low population (1%?) and easy cure. Celiac disease I think is just not a very flashy disease to research in Now HIV - that's where the money is!

Finally, if enterolab results causes a person to look seriously into gluten, and discovers that it's their problem, it really is worth it in spite of the money lost. Even if they may be a bit shady charging a huge fee like this. But everyone should take their results, do an elimination diet, challenge with gluten when they're feeling better, and see if the gluten causes their symptoms. Best way to eliminate the placebo effect

[Skylark]

Thanks for understanding what I'm trying to say.

I guess folks who got positive test results figure the kick in the butt to try the diet was worth all the money. That's fair, though I did it for free myself because I thought I had food allergies. Celiac didn't even occur to me until I realized I couldn't eat wheat, rye, or barley! I worry about the people we don't hear about though.

How many people have paid Enterolab, gotten a gene test with a low probability of celiac (say double DQ1 for example), got a false postive AGA result and went off gluten for no reason because the Enterolab paper told them to? Now they're still sick, eating an obnoxious diet, and totally confused. I can almost guarantee you these people are out there.

What about a person with Crohn's or ulcerative colitis who thinks they're celiac because they got a positive Enterolab anti-tTG result and genetic result (remember he calls more than 90% of his genetic tests "positive") and it didn't mention the possibility that the result could be caused by inflammatory bowel disease?

What about a person with real celiac who has serum anti-EMA but they went to Enterolab instead of the doctor for some reason and tested negative for fecal antibodies. Now they're still eating gluten. They are probably out there too.

[Marz]

What about a person with Crohn's or ulcerative colitis who thinks they're celiac because they got a positive Enterolab anti-tTG result and genetic result (remember he calls more than 90% of his genetic tests "positive") and it didn't mention the possibility that the result could be caused by inflammatory bowel disease

Bleh, I didn't think of the harm the test could do if someone doesn't see a doctor. I'm always one for getting checked out by a professional rather than self diagnosis. But when the diagnosis is as general as IBS, then I can see people turning to tests like these out of desperation for a cure.

[ravenwoodglass]

How many people have paid Enterolab, gotten a gene test with a low probability of celiac (say double DQ1 for example), got a false postive AGA result and went off gluten for no reason because the Enterolab paper told them to? Now they're still sick, eating an obnoxious diet, and totally confused. I can almost guarantee you these people are out there.

What about a person with Crohn's or ulcerative colitis who thinks they're celiac because they got a positive Enterolab anti-tTG result and genetic result (remember he calls more than 90% of his genetic tests "positive") and it didn't mention the possibility that the result could be caused by inflammatory bowel disease?

Then those folks would go back to their doctor for more testing although by the time most go to Enterolab those conditions have already been ruled out. Celiac and gluten intolerance can occur along with other conditions and noone here is going to say they don't.

And what about the reverse. We see a lot of folks diagnosed with ulcers, for example, who get little relief from the meds because they are treating the symptoms and they continue to get worse and develop other problems because the doctor has told them they have ulcers when the ulcers are a direct result of gluten issues that have never been addressed. We have also had folks that have been diagnosed with Chrons or ulcerative colitis who have seen improvement on the diet. They most likely had both conditions and after the intitial diagnosis doctors never looked further.

If someone does not improve on the diet then they need to make sure that other conditions are not present. We here on the board tell folks that all the time.

Enterolab does not diagnose celiac, they tell folks if they are making antibodies to gluten. Your body does not make antibodies to something it wants in the system.

There are many like myself that do not show positive on the blood tests and doctors refuse to even think gluten could be an issue and many times don't even mention it. If Enterolab helps those folks why is that a bad thing?

Many doctors would tell you to go back to eating gluten, you yourself are not diagnosed by a doctor. But you have been able to tell that you have an issue by elimination. Was that a placebo effect? Of course not. But what scientific studies have you done on yourself to 'prove' that gluten is an issue? Well the best one there is, elimination. Some are unwilling to do a self diagnosis, after all there could be other issues going on that you are unaware of. If Enterolab gives some folks the validation they need, ie. seeing results showing antibodies, to be able to continue or at least start the diet then IMHO the money is well worth it.

Folks tell people to do a gluten free 'trial' after testing is done, not to stay gluten free forever no matter what the results are. They are also routinely told that if no relief is apparent after the trial that they need to continue with their doctor to look for other issues.

[ravenwoodglass]

Bleh, I didn't think of the harm the test could do if someone doesn't see a doctor. I'm always one for getting checked out by a professional rather than self diagnosis. But when the diagnosis is as general as IBS, then I can see people turning to tests like these out of desperation for a cure.

If someone doesn't get relief from the diet then they would go back to the doctor for more testing. Most who have the severe issues that are caused by Chrons or UC have already had colonoscopies to rule those out as the symptoms are severe. My doctors were sure I had Chrons or UC because of how far my symptoms had progressed but the colonoscopy showed I didn't so I was back to the 'IBS' diagnosis. This despite the fact that I was up every night for hours with violent D, I was even told after my celiac diagnosis that IBS does not wake you up in the middle of the night. Doctors chose not to listen when I told them I was waking up nightly or thought I was 'making it up because I wanted to be sick'.

[halsgluten]

(I know this is an old thread, but forgive me for not being able to hold my tounge, as is were)

The gist I get from both sides of this argument is its all about Celiac Disease. I know that this is Celiac.com, not GFD.com, BUT its not all about Celiac Disease. My interest in Dr. Fine comes from his interest in broad autoimmune disease, not just celiac disease. When I was in correspondence with him as a customer, the discussion was about autoimmune disease, not just celiac disease.

Neither do I think his goal is the *curing* of Celiac Disease. I think his goal is the *prevention* of autoimmune disease, which includes celiac disease. (Admittedly, the thought of going on the gluten free diet to prevent celiac disease reminds me of the Elephant Gun Joke.)

He restricts his test for gluten sensitivity genes to those that are present in 99% of Celiacs. He does not test for the associated genes that affect how the gluten sensitivity progresses to various autoimmune diseases, e.g., diabetes, epilepsy, ataxia, Graves, lupus, MS, Hashimotos, microscopic colitis, etc, or effects how severe those disease will be. Since the diet to reduce the likelihood and severity of those conditions is the same, he says he can save the customer half the testing price by not looking at those associated genes. (I call then steering genes in the sense that I see them as steering your gluten response towards various organs.)

If you think it is a tough sell to get an Internist or Gastroenterologist to think about gluten sensitivity, try to get a psychologist or Epileptologist to consider it.

There is a subgroup of autistic children who are GREATLY helped by the gluten free diet and are greatly harmed by subsequent gluten challenges. How do you know your child is in that subgroup without the harmfull gluten challenge? Serum tests will not tell you until too late. Do you put him on the diet at birth with no challenge until he is 18 or 21?

Suppose there is a family history of autoimmune disease and/or autism. Do you wait for the condition to appear before you apply the diet or do you start the diet from birth? (or even before conception?) You can test your child for DQ2 or DQ8 at birth, you dont need Enterolab for that. If you find your child has DQ2 or DQ8, do you do the diet immediately or wait until there are antibodies in the blood? Still, dont need Enterolab for that.

It seems to me that what Entrolab can do is detect the development of AGA at the earliest possible stage, generally years before AGA appears in the blood.

I got to thinking about this again recently when skimming an article on Diabetes and recognized the genes they were talking about. Wow, look up newer articles on DQ2, DR3-DQ2, and A1-B8-DR3-DQ2 multigene haplotypes! -- I think the strength of gluten/autoimmune hypothesis is increasing even without his publishing.

You Celiacs think it is frustrating he has not published? What about those thinking about gluten's role in autoimmune disease in general? He is studying the ability of stool gluten antibodies to predict the development of autoimmune disease in general and he should be holding ten years of data by now! To prove that early application of GFD prevents or reduces some autoimmune disease, I realize now that he has to have records of patient populations spanning at 10 to 20 years! Most of his records must be under 5 years at this time.

But when he is asked to say why he hasnt published, he doesnt say that......

[Skylark]

I'm sort of stuck on the study that showed that stool AGA can appear and disappear in healthy people. Fine's data on his website showing poor correlation between stool AGA and long-term outcome on a gluten-free diet isn't very encouraging either. Blood AGA is a pretty bad test and is considered outdated; there is no reason stool should be better. I bet stool deamidated gliadin would be really good, but you can't get that one from Enterolab.

Now if you find TTG in stool and respond to the diet, that may be reasonable evidence of celiac. Again, the lack of publications doesn't give us any information as far as sensitivity and specificity of stool TTG. Remember also that he is not assessing total IgA the way a doctor does so there can be false negatives.

As far as genes, DQ2 and DQ8 are very clearly not the whole story. Why is 30% of the US population DQ2 or DQ8 but only 1.5% celiac? As you mention, there are multigene haplotypes, and also other loci with significant LOD scores. I don't think it's warranted for everyone who is DQ2 or DQ8 to go gluten-free on current evidence. Possibly people who are homozygous DQ2.5 would be wise to avoid gluten. Sadly Enterolab only tests beta chain so you can't be sure people with 0201 are actually DQ2.5.

It's such a quagmire now as far as research...

[halsgluten]

I'm sort of stuck on the study that showed that stool AGA can appear and disappear in healthy people.

Healthy or pre-sensitive? But I get it that expression can vary due to variable mucosal state.

Blood AGA is a pretty bad test and is considered outdated; there is no reason stool should be better.

Primary screening for celiac and gluten sensitivity is IgA. IgA is concentrated in the mucosal tissues. Intestinal mucosal tissues are shed into the stool, but not shed into the blood generally. As I understand it, general circulating unbound IgA is exceptional. So, I think there is a reason to look in the stool for IgA AGA instead of serum.

Fine's data on his website showing poor correlation between stool AGA and long-term outcome on a gluten-free diet isn't very encouraging either.

Point me to that one. I just see these slides in the Enterolab:

• Symptoms >1 Yr Follow-Up
  
• Improved Health Follow-Up
  
• Overall Health Follow-Up
  

On these charts, it looks like everybody gets better, AGA positive or not; BUT, the best improvements correlate to going GFD, AGA positive or not, suggesting that gluten is bad for most people, which I generally accept, just more so for the DQ2 and DQ8.

BUT, Enterolab says its tests reduce false negatives by only roughly half. So, I reckon the rate of undetected sensitivities in the negative group is high, especially since I expect the rate of sensitivity to be high among those seeking the test = everybody gets better, at least that putattive 30%.

Now if you find TTG in stool and respond to the diet, that may be reasonable evidence of celiac.

Again, I'm interested in the general gluten sensitive populations and the pre-celiac population, not just Celiacs.

Why is 30% of the US population DQ2 or DQ8 but only 1.5% celiac?

Because DQ2 or DQ8 only predispose for sensitivity and classic celiac is possibly only a minority presentation of that sensitivity. That 30% seems to include gluten-moderated "non-celiac" diabetes, ataxia, epilepsy, liver disease, autism, miscarriage, and such.

Sadly Enterolab only tests beta chain so you can't be sure people with 0201 are actually DQ2.5.

Since only the beta chain that determines sensitivity, I accept that he may truly believe that people should treat the sensitivity, whether celiac or not. If he was just out for a buck, I imagine that he would peddle the not just the HLA-DQA, but also HLA-DRB, HLA-A, and HLA-B.

It's such a quagmire now as far as research...

Compared to 10-20 years ago when the wide range oa severity was apparent by not explained by the multiple isoforms and effect of the heterodimer?

[Skylark]

Point me to that one. I just see these slides in the Enterolab:

• [*]Symptoms >1 Yr Follow-Up

[*]

[txplowgirl]

Given that the diet is a better predictor of long-term outcome, why spend $300 that you could have used on a cutting board, new toaster, some gluten-free cookbooks, and a big cart full of gluten-free breads and baking mixes?

Putting all the medical mumbo jumbo aside. Sometimes it just comes down to people needing a piece of paper validating that something is wrong with them. For some that means being able to stick to the diet with no cheating. Plain and simple.

[Skylark]

Putting all the medical mumbo jumbo aside. Sometimes it just comes down to people needing a piece of paper validating that something is wrong with them. For some that means being able to stick to the diet with no cheating. Plain and simple.

It's a sad state of affairs when a meaningless and woefully overpriced piece of paper is more validation than ones own body. This is not aimed at anyone in particular, just something I find deeply disturbing over and over on this board.

[ravenwoodglass]

It's a sad state of affairs when a meaningless and woefully overpriced piece of paper is more validation than ones own body. This is not aimed at anyone in particular, just something I find deeply disturbing over and over on this board.

We are all entitled to our own opinions here. Mine differs much from yours. I would have given anything to pay $300 for that test rather than the 17 grand that we paid to doctors for visits, meds and testing in just the year before I was diagnosed. I just wish I knew about them then. While there are some that really don't like his tests there are others that have been helped a great deal. I had been wondering for I don't know how long if soy was an issue and likely still would be if they hadn't pinpointed the reaction. Their gene test also explained why my DD was told she could never be celiac even though she had both a positive blood and biopsy. If the test helps people then it is well worth the relatively low cost.

[dilettantesteph]

The genetic testing is known to have a very high false positive rate. 30% of the population is DQ2 or DQ8, while only an estimated 1-2% is celiac.

This statement is unfair. Having the genes for celiac and not having the condition is not a false positive. The test shows that you have the genes and you do have the genes. It is common knowledge that lots of people have the genes and not the medical condition. Certainly no one is hiding that information from anyone.

Of course, that is using a positive biopsy as indicator of having celiac disease. It is quite possible that many more people have celiac disease and the damage hasn't progressed enough in the intestine to give a positive biopsy on endoscopy. Certainly the large number of people with DH and negative endoscopies proves that.

Dr. Fine can't prove his test since it is designed to pick up celiacs whose disease hasn't yet progressed to the stage where the endoscopy is positive, so by definition, (at least until very recently) don't have celiac.

People can make up their own minds on how they want to spend their money.

[cyberprof]

I used Enterolab for my then-15yo son and would do it again. The $350 cost was worth it for two reasons: 1) His father (my husband) refused to let him take the risk of an endoscopy; and 2) his blood work was negative (as was mine). My son wanted some "proof" before he went gluten-free.

I was already diagnosed celiac, so it wasn't a shot in the dark.

So, my son was convinced and my husband was convinced. My son is now VERY healthy and is almost 18. He doesn't have the celiac diagnosis - for good or for bad. He may at some time do a gluten-challenge but has been pretty compliant for the past 2.5 years. I am convinced that he would have been 5'6" or so instead of his 6'2" if he hadn't gone gluten-free/DF but cannot prove it. But he is so healthy and happy and that's what matters. I loved proving the docs wrong who said that he was only destined to be 5'5" based on my 5'3".

I would recommend Enterolab for folks in similar situations, where the endoscopy diagnosis route is not possible (because of the anesthesia risk or personal preference or doctor's refusal to order) or because they are already gluten-free and don't want to challenge.

If someone still has problems after going gluten-free (and investigating other intolerances) then go back to the doc and getting checked for Crohns, ulcers, colitis etc. makes sense.

But in the end, going gluten-free is its own reward. Just my $0.02 FWIW.

[halsgluten]

The fecal AGA is a worse predictor of outcome than simply trying the diet. You gain nothing from buying Enterolab, unless you need a $300 piece of paper to wave at a family member or doctor to get care.

So, by extension, serum AGA is an even worse predictor of outcome? So, if you need a of paper to wave at a family member or doctor to get care, I would think you would be more likely to get it from Enterolab than from, e.g., Labcorp. My point is, your advice to "save your money and try the diet" applies even more to serum AGA labs. That was the advice I took from a Celiac eye doctor in 2002, before either of us had ever heard of Enterolab.

I also think gluten sensitivity is a much broader set of reactions to wheat than just HLA-B mediated autoimmunity. Wheat germ agglutinin and gliadin peptides seem to have some inflammatory effects that are entirely different from the mechanisms of celiac disease. Because of that research, I'm not convinced that all gluten sensitivity is a result of TTG-driven autoimmune attack on the small intestinal mucosa. Wheat is allergenic as well, and the idea in the literature that most childhood wheat allergy resolves in adulthood is probably a little glib. On top of that, there is the issue of fructans in wheat and the millions of people with unrecognized fructose malabsorption. That's what I mean by the research being a bit of a quagmire.

But, that was pretty much the picture in 2004, Dr. Fine saw a number of those points before then. For example, he was

[halsgluten]

It's a sad state of affairs when a meaningless and woefully overpriced piece of paper is more validation than ones own body.

“Meaningless” is a strong claim.

The price seemed about the same as other tests that were twice as likely to be wrong.

18 months* is a long time to sweat out validation from the body when the symptoms are developmental and the person can’t accurately communicate internal states. (*The CNS changes so slowly it was once presumed not to change (heal) at all -- I had a neurological change 13 months out)

Sometimes the validation by the body isn not vailable. Isn’t clinical indication needed sometimes?

[psawyer]

Didn

[Jestgar]

My point is, your advice to "save your money and try the diet" applies even more to serum AGA labs.

I agree with this. If your body tells you a certain food is bad, a piece of paper should be irrelevant. If I eat a peach, my throat swells shut. I don't need someone else to confirm this for me.

[halsgluten]

I have been an active participant on this board for six years. I may not have managed to read every post, but I certainly do not recall seeing any post to that effect. To try a dietary change of any type, be it gluten-free, low carb, vegetarian, or whatever, is hardly what I would call irresponsible.

I was attempting to be non-personal and not refer to the specific post.

However, with your observation, I see that my statement does not say what I wanted it to say and may not represent the opinions of the member, and so I withdraw and delete the comment with apologies. I hope this action is appropriate.

[CMCM]

A few comments on my experience. I was very sick by late 2005, at which time I was 56. Things were heading towards a crisis level, and as I researched symptoms I was led here and other celiac related places. Despite having a mother who nearly died in her mid 40's from undiagnosed celiac disease (she was down to 85 lbs, couldn't keep anything down, and this was the mid 1960's and doctors were almost totally ignorant about celiac disease. They knew about tropical sprue and kept asking her if she had been in the tropics!!). After her diagnosis, being gluten free (very hard at that point in time) healed her fairly quickly. The told her that her villi were nearly destroyed (hence the weight loss) and her intestines looked smooth as a billiard ball! After 6 months gluten free she had a repeat biopsy and she was mostly healed. She is now about to turn 90 and she's unbelievably healthy...as long as she doesn't get a smidgen of gluten. She DOES get glutened periodically, always something imperceptible, and she gets unbelievably sick due to her extreme sensitivity.

On to me....since my symptoms were varied but not like my mom's, I always figured I couldn't possibly have celiac disease. Rather, I knew I had big issues with dairy and figured that was the source of most of my problems. I ate minimal dairy, but for some reason, I also didn't eat all that much gluten, either. But I had serious digestive issues my whole life, from infancy onwards. It was mostly just a fact of life....until late 2005 when I reached a critical point where I was sick so much and felt like virtually ALL foods didn't agree with me. I had rather a lot of acute symptoms that were getting worse (won't detail them here), but that's when my search began. I got a celiac panel blood test, although from what I've read over the years, it's possible it wasn't the full group of tests needed. My GP was pretty clueless about what to order, and even the blood lab called up to ask the dr. what exactly she was ordering. I think she ordered one or two things, but not all of them. It came back negative, which I have since learned isn't definitive anyway. A positive blood test tells you something definite. A negative test isn't so solid...you still might have celiac disease even with a negative blood test.

Not having the endless $$$ to pursue all this thru my insurance, who given the negative blood test wouldn't pay for anything further, I learned about Enterolab. It seemed like an interesting thing, so I ordered the gene test, all the stool tests, and a casein test (plus soy and some other things). My gene test came back with a definite celiac gene (0201) and a second gene that was identified as related to gluten sensitivity. I realized the presence of that celiac gene only told me I had a predisposition, nothing more than that. And the other tests revealed definite reactivity, but again, I knew they were NOT a diagnosis of any kind. My casein test also showed a sensitivity.

I went gluten free and my symptoms disappeared one by one. After about 6 months I felt like a different person. I was pretty good for a long time, but have had various bouts of non-compliance and I learned that if I am eating gluten somewhat regularly, after a couple of weeks (aside from various digestive issues which show up early), I was starting to get something new: severe arthritis type pain in my hands, wrists, fingers. Stopping gluten made it go away after about a month or two gluten free. I've done this a few times, and the connection is very clear.

Dr. Fine: I was/still am a bit bothered that he hasn't published his supposed research. His stool testing method is controversial in some circles (especially among those less knowledgeable who want to stick to the decades old methods of diagnosis). I do know that medical people who work "outside the traditional box" are very frequently shut out of the big medical publications. Still, he has a lot of data from all his years of Enterolab testing. I was never contacted after my tests to inquire about my results, if any, of eating gluten free. I was initially surprised at that, and I still don't understand it. It seems like if he were really doing research/studies to later be published, wouldn't he want to use this big data base of testers who passed thru Enterolab?

All this said, Dr. Peter Green, one of the biggest names in U.S. celiac knowledge, in his very well known book "Celiac Disease: A Hidden Epidemic" mentioned the Enterolab method of testing in a positive way. I have also seen it mentioned by a variety of others.

A few years ago Dr. Fine was featured speaker at a local celiac group meeting. I was extremely impressed with what he said and with him in general. He knows his stuff, and I had the opportunity to ask him some questions and was generally pleased with his answers. He most certainly did not come across as a quack or anything, although I will say he's a quirky kind of guy who appears to be interested in a lot of things, including his music.

My mom out of curiosity got herself gene tested, and found out she is a double celiac, two copies of the same gene. This may account for why she is so sensitive. We never knew my grandmother had a gene, but she died at 99 so it didn't kill her. She did have severe arthritis, though, and who knows what else that she just didn't discuss. She was always very thin. After my test, I tested my two kids and they both got my celiac gene. Since my mom had two identical genes, me and my 3 siblings all automatically knew we had at least the one gene. My brother tested his two kids and they both also had the same celiac gene, and surprise, my nephew had 2 celiac genes (different ones), so he got one from his mom. She had no idea, but given some of her health issues, it's not surprising to me!

Well, long long post, but I really do find Enterolab useful and I'm grateful for the information I was able to get from them. I fully realize it's not a solid celiac diagnosis, but the gene test tells me my predisposition, and I know how I feel when I eat and don't eat gluten. Day and night. Whether you have celiac disease or it's just gluten sensitivity, the "cure" is the same: you don't eat gluten either way. If being gluten free changes your health for the better, isn't what you do obvious?

I guess my only complaint in NOT knowing "for sure" is that there are times here and there where I can indulge in sporadic gluten eating and I get no noticeable reaction. Other times I will react. Of course, if I have celiac disease I shouldn't eat any gluten ever, but not knowing, I guess I push the envelope sometimes.

[Lisa]

Nice letter Carole!