Sanity Check: Validity Of Enterolab

[Rachel--24]

Can I ask a question here: I had fairly high/positive results for gluten intolerance through Enterolab, and those results also showed gluten induced small intestinal malabsorption (at the moderate level).

I just wanted to mention that Enterolab's malabsorption test is just that...a test for malabsorption. It does not in any way identify the cause of the malabsorption.....it does not show that the malabsorption is gluten induced. When I had my testing done they included a list of other possibilities for malabsorption.

My Enterolab results were as follows.

antigliadin IgA 16

tTG IgA 15

malabsorption 912

I had the biopsy and no villi damage was seen.

My malabsorption did not improve on the gluten-free diet alone.

In my case the high malabsorption was not caused by gluten intolerance.

It was over 3 years ago that I had the testing done. Has something changed since then...are they now able to identify the cause of malabsorption? Do they know when its gluten induced and when its not?

[CMCM]

Well, what seems to be discussed more and more these days is the idea of a spectrum of gluten sensitivity, the most extreme form being celiac disease on one end of the spectrum (and permitted to occur due to the presence of a specific celiac gene), and zero symptoms on the other end, with everything in between. Many people write that humans really should not eat gluten because their systems simply are not adapted to processing gluten, which is seen by our bodies as a foreign invader and hence an autoimmune reaction occurs. The human body adapts to the presence of gluten, and perhaps some of us adapt better than others. Some adapt for long periods of time before finally succumbing to it. My mom, for example, has two celiac genes but she never got sick until in her early 40's, after surgery (the trigger). So what did she have before this point in time? Most likely a form of gluten sensitivity which she wasn't entirely aware of. Prior to age 40, no one would ever have told her she had celiac disease.

I had certain vague symptoms all my life, I attributed most of them to dairy problems, and didn't get really sick to the point where I had to pay attention until I was about 56. Blood tests were always negative, but given what I've learned myself, I know I wasn't eating enough gluten to show up in a blood test. But I have the celiac gene, I was sick, so what do you do with that observation?

The medical community defines celiac disease through endoscopic observation of intestinal villi damage. That was a convenient term given to things at a time when virtually nothing was much known about gluten and its effects except in the most extreme cases such as my mom's (she almost died) where celiac disease could be affirmed. I've recently read of doctors who say they'd like to eliminate the term "celiac disease" and refer to the whole matter as gluten sensitivity in all its varying degrees of severity. And by the way, my mom, who has been 100% gluten free for 45+ years now, in a traditional celiac screen she would now test negative. Yet, if she eats even a microscopic smidgen of gluten she get violently sick. So what is she now? I'd say she is gluten sensitive with a genetic predisposition to develop celiac disease if she were to eat gluten.

I really do think in the future, doctors will come to realize that the real issue is gluten sensitivity and how to prevent the reactions and possible development of celiac disease as a result of eating gluten. Simple as that.

[coldnight]

This whole thread bothers me, because I went gluten free, well newb, so as close as I can get, and it has helped me tremendously so far. I've almost completely stopped taking the boatload of opiates for IBS and all the related symptoms.

But I stumbled on the gluten free diet by elimination. So, by the time I figured out the reason I was feeling better (after a pretty nasty re-challenge episode with 1/4 bag of wheat pretzels)... I've already been off way too long to get blood work. (I had it like 6 years ago, but I don't think it was accurate, I was never told to eat wheat preceding it, and I wasn't eating much at all then, so who knows.)

So, I'm doing genetic testing with enterolab, waiting for results. I don't expect it to diagnose me. Just give me risk percentages.

I'm happy with the results of the diet, but I'd like to know if it's celiac or some sensitivity to starches or something. But how can I know that now without eating large amounts of gluten for, what my doctor said would be, 6 weeks? If enterolab is not accurate, then I've really just wasted money no?

(I would assume enterolab would get a large number of positive results, even if I don't have the celiac genes, it seems likely that wheat/gluten is a problem for me, after months of cutting out foods and messing up, I think it may be the ONLY thing causing my symptoms, I can even eat several foods now that I could not before. There must be a slew of people in the same boat as me, who decide to do genetic testing rather than go back on gluten. That alone would raise their percentages quite a lot.)

[lizard00]

My doctor ordered the genetic test. I was in a situtation similar to yours, where I stumbled across my problem with gluten accidentally. The PA at my GP's office didn't order the whole panel, and then didn't know exactly how to interpret the results. Fast forward 6 months, I was referred to another GI who I really liked (the first one was a disaster).

His first suggestion was to go back on gluten for 3 months so he could do an endoscopy. At that point, I was beginning to get my life back. That was just not really an option. So we did the genetic panel, and it came back positive for double copies of the DQ2 gene. So with my extremely high risk and my resolution of sympotms, it was enough for him.

I understand your dilemma. I considered Enterolab many times. I didn't go with them for a few reasons, and I'm sure one of the main reasons was that my GP didn't think I was crazy.

I completely get why someone would do the genetic testing with Enterolab. I can't say with certainty what I would have done had my current GI not been so compliant and suggested just doing the genetic testing. I'm kind of skeptical about Dr Fine's other testing methods, that's just me and my opinion, but I think the genetic aspect helps a lot of folks have a measure of closure.

[coldnight]

It seems like the genetic testing should be ok. I mean, there are well known labs that look for the same genes, so that part of his research is not really out of the mainstream is it?

[ShayFL]

Enterolab's genetic tests are accurate. They use the American Red Cross for Molecular Gene Analysis.

[Mama Ruthies]

I haven't read all the responses but want to say that Enterolab was an answer to our prayers for our then 3 year old son. I firmly believe in their results and no one can contest their gene testing. Our son had speech delays and bad allergies. We had him tested at the allergist, and he came back positive to all 20 items. This set off a red flag to me. I read about Enterolab and we decided to do the full panel. His numbers were very high, and he has one celiac gene and one gluten sensitivity gene (the one considered a celiac gene in Europe). We have had him off gluten for a little over a year. After about 5 months off gluten, his speech started to improve. Then he got a piece of "gluten" pizza---bad!! His speech regressed, his pronounciation was horrible. He definitely has problems with gluten.

Our son didn't show any GI symptoms, and we had him evaluated by one of the leaders in the country for late talkers who said without a doubt that our son's speech issues are related to celiac disease.

We didn't do a celiac panel through our doctor for a number of reasons. He had already had two traumatic blood draws, and we had read about all the inaccuracies with young kids with the tests.

Personally, I don't care if he has celiac or gluten intolerance----all I care about is that he NEVER gets any gluten. I was shocked at the tone of some of the responses I read. My feeling and hope is that I can help people become aware of the issues gluten causes---whether it is from celiac or gluten intolerance. It definitely causes people much discomfort and leads to many other issues. So many people are so uninformed and I feel it is great to be able to educate them on celiac/gluten intolerance. Many won't make any changes, but at least I feel I can educate them.

Just wanted to add for anyone wondering about Enterolab's accuracy that I support them fully. I feel it is a great test for kids, and again, no one can contest the gene testing. I also went off gluten and feel much better--no more late evening bloating. I didn't have the celiac panel run on me---just the gene testing through Enterolab. I don't plan on eating gluten again---want to be healthy when our 2 year old gets married!

[lbd]

Mama Ruthies, I agree with you about Enterolab. The non-publishing thing has been discussed ad nauseum on other threads. For some reason, some people are very anti-Enterolab, yet seem to accept all sorts of other ideas with no proof whatsoever. If it had not been for Enterolab, I would still be doubting if gluten was the cause of my problems even though I had relief from so many symptoms on a gluten-free diet. Enterolab also gave me the last piece of the puzzle - the cure for migraines that I had suffered from since I was very little. The stool testing showed a reaction to casein - totally a surprise for me. I cut out almost all sources of dairy (I was a daily raw milk drinker). I only eat a limited amount of cheese from time to time - no more headaches. What a miracle to be able to not expect the usual migraines several times a month! Since going completely gluten free and mostly casein free since July, after receiving results from Enterolab that showed genetic and lab evidence that I had a reaction to both, I feel incredibly better, have lost 10 lbs (needed that!) with no effort at all, and feel that I have the backup I need to explain to family and friends why I eat this way. My mind is so much sharper now - the brain fog is lifted, restless legs have calmed down completely, etc, etc. If that is what Dr. Fine and Enterolab has done for me, then I say more power to him!

Laurie

[Rachel--24]

For some reason, some people are very anti-Enterolab, yet seem to accept all sorts of other ideas with no proof whatsoever.

I cant speak for anyone else, but I know that I have stated my reason for no longer having faith in Dr. Fine as well as his method of testing several times. I purchased his tests....so there WAS a time that I believed in them. I have since changed my mind.....after doing much research, after seeing many people continue to suffer despite Dr. Fine's claims that their malabsorption is caused by gluten intolerance, and after waiting for years for him to follow through with his promises.

Here is my most recent post taken from another thread on this same topic...

https://www.celiac.com/gluten-free/index.ph...st&p=486101

I personally do not feel that its right for Dr. Fine to lead people to believe that he is about to publish....when it seems quite obvious that he's not. I do not necessarily need to see him publish for peer review.....as I do have faith in other doctors who have not published. However, since Dr. Fine seems to make claims that he does not back up, nor does he attempt to follow through on his word.....it really makes me question the validity of his testing as well as his motives.

Why does he feel the need to keep repeating the same statement year after year? Is it because he feels that he will sell more tests if we believe that he is about to publish? I do feel that for many people who are unsure....the belief that he will publish for peer review makes the test seem more valid....and they are more likely to purchase the test based on this belief. I know that it was certainly a factor in my own decision more than 3 years ago.

As stated in the other thread....he has had no difficulties publishing other material in the past. When it comes to publishing with regards to his stool test....it is just not happening.

No....I do not believe that we will see him publish early next year.....or even the year after that. I do not believe that he will make as much money off of these tests if he publishes for peer review.....and that is because I do not think that his method of testing will prove to be valid.

Other doctors that I see or that I have faith in do not sell themselves by deceiving the public year after year.....claiming that they are in the process of publishing research that will be reported in just a few short months....which of course has not happened in all of this time.

[fedora]

Mama Ruthie,

HI. I have 2 questions. When you said your son had a gluten sensitive gene that is recognized as a celiac gene in Europe, What gene is that?

two, your son's speech delays. How old was he when he said his first sentence? Did he says words? How old is he now?

My son was slow to talk, he did not say a sentence at all till over two. He is 7, in speech therapy and I have to translate for him still for other people who aren't around him much. I understand him though. He has not been tested for celiac.

hope he keeps getting better.

[Mama Ruthies]

Mama Ruthie,

HI. I have 2 questions. When you said your son had a gluten sensitive gene that is recognized as a celiac gene in Europe, What gene is that?

two, your son's speech delays. How old was he when he said his first sentence? Did he says words? How old is he now?

My son was slow to talk, he did not say a sentence at all till over two. He is 7, in speech therapy and I have to translate for him still for other people who aren't around him much. I understand him though. He has not been tested for celiac.

hope he keeps getting better.

The gene is DQ7. Our son didn't say his first sentence until he was about 3.5. He was saying "I" statements (I go to potty, I go in the car) before he got the "gluten" pizza, but still isn't saying those yet. His longest sentence had been "Mom get the stroller and I get in the stroller" after a long day at the zoo. He hasn't said anything close to that long since the pizza.

I know of another mom who's son is speech delayed and had to be put under to have dental work done. The doctors did the gamut of tests and he is celiac. His speech has improved as his time off gluten has increased.

Blessings!

[darlindeb25]

I know that I have an autoimmune issue. I think that celiac is a small piece of the gluten intolerance problem. I think if you only have celiac that you do not have as many health issues as a gluten intolerant person has.

The reason I think this is that the gluten intolerant still get villi damage (once we are almost dead) in addition we get colon cancer, stomach cancer, throat cancer, brain issues-including MS type stuff, diabetes, arthritis, eye problems, osteoporosis, depression, and well the other 250 common problems associated with a gluten problem.

On this forum there is a very divided opinion. Those that only believe that celiac is the only problem and that DQ2 & DQ8 is the ONLY celiac genes & they do not like Enterolab. That will never change. People have their opinions, & we are free to voice them, much to the chagrin of the "celiac=positive biopsy & positive genes" people.

I agree, totally, with gfpaperdoll. She's right. I too, believe that celiac is a small piece of the gluten intolerance problem. I do however, believe we all have the same chance of having any of the health issues mentioned, plus more...simply because I believe gluten intolerance, and celiac are one in the same, just different stages of the disease. I have double DQ1, subtype 6 genes...my doctor still insists I have celiac disease. I agree with him. I also have neuropathy, arthritis, raynauds, dry eyes, and sleep apnea. Yes, I am celiac.

SBJ, celiac's are not more prone to type 1 diabetes, it's the other way around. I have never read that a celiac has to worry about getting type 1 diabetes...type 1 diabetes are often celiac, not the other way around.

Do you see the serious problem we have here with some posters?

[lonewolf]

The gene is DQ7. Our son didn't say his first sentence until he was about 3.5. He was saying "I" statements (I go to potty, I go in the car) before he got the "gluten" pizza, but still isn't saying those yet. His longest sentence had been "Mom get the stroller and I get in the stroller" after a long day at the zoo. He hasn't said anything close to that long since the pizza.

I know of another mom who's son is speech delayed and had to be put under to have dental work done. The doctors did the gamut of tests and he is celiac. His speech has improved as his time off gluten has increased.

Blessings!

This is really interesting. My son (13 now) is double DQ7 and I was told that he couldn't be Celiac. I had no idea that it was recognized as a Celiac gene in Europe. He's gluten free anyway and doing well.

I hope your son's speech catches up soon!

[psawyer]

SBJ, celiac's are not more prone to type 1 diabetes, it's the other way around. I have never read that a celiac has to worry about getting type 1 diabetes...type 1 diabetes are often celiac, not the other way around.

I am not sure that this is actually the case. There is a higher incidence of celiac disease among type 1 (autoimmune) diabetics than there is in the general population. The reverse is also true. If you have either condition, you are more likely to develop (or already have) the other. It is not known whether one causes the other, but it is generally thought that, like all autoimmune diseases, they somehow correlate.

[lizard00]

I am not sure that this is actually the case. There is a higher incidence of celiac disease among type 1 (autoimmune) diabetics than there is in the general population. The reverse is also true. If you have either condition, you are more likely to develop (or already have) the other. It is not known whether one causes the other, but it is generally thought that, like all autoimmune diseases, they somehow correlate.

Peter, do you think your type 1 diabetes was brought on because of undiagnosed celiac, or do you think that the diabetes caused the celiac? Since my DQ2 is linked to type 1, I wondered if I hadn't caught the celiac so early what my chances would've been to develop type 1 diabetes. Just a thought...

I worry more about this because of my son, who has at least one DQ2. I worry that he'll end up with type 1 diabetes because he tests negative on celiac panels, or something equally as horrible that mother's freak out about... knowledge is good and bad.

[psawyer]

Liz, I had symptoms that I can now identify as probably celiac since early childhood. I am 54. My diabetes was diagnosed in 1986 when I was 31. My celiac disease was not diagnosed until 2000, but definite and extreme symptoms were evident from at least 1995.

Diabetes is easy to detect and diagnose. Celiac is far less well known, and very often misdiagnosed.

I can not support it with hard evidence, but I do believe that if my childhood symptoms had been correctly interpreted as celiac disease, and if I had gone on a gluten-free diet then, I would not have developed diabetes. That is my belief, but there are no scientific studies to back it up.

[nutrifoodie]

I haven't read this whole thread, BUT I understand what people here are saying.

For me, I found that wheat was a HUGE issue, and that not eating wheat cleared up my symptoms almost 100%.. but there have been other things going on that should be clearing up and aren't. My father recently learned he has a problem with wheat, his problems have not fully subsided either, worse than mine. This has made me think about Celiac's alot. I have been VERY strictly wheat free (alot of wheat free products/recipes are gluten free as well) since February and gluten free for almost 2 months now. I am IgA deficient, and stool testing for gliadin came up negative, after I had removed wheat from my diet for 3 months, no duh! Recently learning of my Dad's connection with wheat, and the genetic connections that Celiac has, I am going to get gene tests along with my Dad (he is adopted=no family history, which stinks). Through being on these boards, I've learned about Enterolab and how they are reliable for the gene testing. That's the only reason why I would do Enterolab, only for the gene tests or for their stool casein, egg, gliadin etc, tests. I believe that it is best to have a FULL Celiac panel BEFORE you go gluten free to diagnose, following with the biopsy. Going gluten free before, screws up your chances of a reliable test. Correct me if I am wrong.

Do any of you have suggestions for me? Which lab should I use for gene testing? Or does it really not matter?

[gfpaperdoll]

Nutrifoodie, the lab that you choose should be one that test for all the genes associated with celiac & gluten intolerance. Some labs only test for the "celiac" genes DQ2 & DQ8.

re your dad being adopted. Are you aware that he can put his DNA in a database & probably find people that are related to him? Right down to what his biological name is. We used family tree DNA & found an adopted relative of ours. He was left somewhere as a baby 62 years ago. we also found whom we believe to be the brother of our relative that we cannot find from about 1807, they cannot find their relative for the same time period & all our DNA matched theirs, so it seems that the missing relative is the father to the two boys & our relative in common. very interesting...

Good luck with your searches.

[Fiddle-Faddle]

gfpaperdoll, that's very interesting--how do you find this kind of database? And where do you go for the DNA test?

[oceangirl]

This is a juicy, jam-packed thread! I guess I'd just like to add that, I tested positive on the celiac panel after 4 months gluten very lite and then went to Enterolab for more info and had the double DQ1 diagnosis. This was almost 4 years ago after 35 years of intestinal ill-health and with diagnoses of ulcerative colitis at 11 years old to ulcers and IBS after that. Then I REALLY got sick. Finally, one of the umpteen GIs I'd seen since I was 10 asked if I'd had a celiac panel and, lo and behold, positive antibodies! End o' gluten.

In a family of scientists, I have trouble with Dr. Fine's lack of peer-reviewed data although his data for me strengthened my belief that I was not nuts. I know I have an auto-immune reaction to gluten and I fear it like the plague. So much more research is needed. This forum and people like Jerseyangel and GFpaperdoll and Momma Goose and so many others have helped me through what was such a dark and lonely night. We're all just doing the best we can trying to figure out these eternal/infernal mysteries of life. I've got a lot of questions for the Head Honcho someday...

Feel well all and Happy Thanksgiving. I'm thankful for this Board.

Peace,

lisa

[darlindeb25]

I guess I'd just like to add that, I tested positive on the celiac panel after 4 months gluten very lite and then went to Enterolab for more info and had the double DQ1 diagnosis. This was almost 4 years ago after 35 years of intestinal ill-health

Thank you Lisa, another celiac double DQ1. I know there are more of us out there.

Happy Thanksgiving!

[jerseyangel]

Peace,

lisa

Peace to you Lisa, and a very Happy Thanksgiving

[oceangirl]

Darlindeb and Patti,

Thank you! Deb, thank you for your e-mail; I'm so bad with computers I couldn't figure out how to respond directly! I know, it's pretty sad, isn't it?

lisa

[gfpaperdoll]

re peer review, anyone that has not read "Good Calories Bad Calories" by Gary Taubes, should read that book, it is about the history of "peer review" in this country & where it has gotten us.

I thank God that we still have people like Dr. Fine that can stand on their own two feet & think for themselves without succumbing to pressures to conform... This country was founded with people like Dr Fine. Those same founding fathers who I am sure would start a rebellion if they had to deal wtih the medical bureaucracy, governmental red tape, insurance companies, FEMA, (oh wait I have listed that twice, FEMA is short for governmental red tape) and other foolishness that we have to put up with today.

re DNA you can email several companies, we use Family Tree DNA. They will mail you a kit. Then someone, male, from your family submits their DNA. Open Original Shared Link here is a link to family tree DNA

oh Fiddle Faddle, I have been meaning to PM you, I know someone on this board & you posted word for word what I had already told her on the phone. Then what I did not say, you did, but I had thought it!!!! I saw her recently & she asked me if I had read your post.

We will have to compare & see which DQ1 genes we have! I wonder if we have the same ones?

Happy Thanksgiving Everyone

[CMCM]

About Dr. Fine.....about 16 months ago a local celiac group had Dr. Fine in to speak. Since I'd had the Enterolab testing, I was curious about him and went to hear his lecture and see what sort of person he was. I came out of the lecture feeling impressed with him and his knowledge and interest. I do not feel he is a quack, and his testing is mentioned and recognized in a number of celiac books and by some of the major centers of celiac study. That so many mainstream doctors haven't heard of him really means nothing.

I think it's unfortunate that he hasn't yet gotten to the point where he can "legitimize" his testing methods by peer review. I can't imagine why he hasn't yet done this. Although his CV lists a fair number of published articles, he doesn't seem to have written anything new in the last few years. Also, he appears to be more into his music these days.

After my testing results were in, I had a lot of questions. They were always answered, but I was somewhat annoyed that I had to be so persistent to get some basic knowledge about my results. The info I requested should really have been included in the test results.

Dr. Fine has a lecture DVD on celiac disease and I bought it and found it informative and interesting.

Basically, Enterolab testing was useful to me for revealing that I had the celiac gene and thus the predisposition to develop celiac disease. It also showed antibodies and no malabsorption. Whether or not I actually had celiac disease I'll never know. I'm certainly not going to pig out on gluten, make myself sick, and spend $$$ getting a biopsy to find out. The fact is, I've directly observed what happens to my health when I eat gluten, and how different I feel when I don't. That really is enough for me, and Enterolab helped me reach a decision to not eat gluten any more.