Wary...

[AmandaD]

I have a questions for anyone who may have an opinion or is really knowledgeable on this topic.

I hear a lot of people mentioning that they've been diagnosed by Enterolab and have had different panels run, etc. Is the Dr. that runs this lab kosher? I see that his name is Kenneth Fine but I also see that he goes by Kenny "Jude" and is a singer selling celiac disease's.

Is Enterolab testing valid or is it questionable? Is this "expert" valid or is he questioned in the medical community?

Seems incredibly expensive to buy your own tests instead of seeing the doctor about something like Celiac...I'm confused.

Thanks for your responses in advance...

[tarnalberry]

Enterolab is a fascinating case, really. Dr. Fine has not yet published any peer reviewed studies (though I've heard he's working on it - since I first heard that a year ago, I'd expect it to be relatively soon, in the next year or so), but there is independent research from Italy supporting the fecal testing concept. (That's the not same as supporting his tests, but lends some credence to the possibility.) My understanding is that he does have completely valid credentials, and the singing thing may just be an outside-the-job hobby. Insurance doesn't cover these tests, but he claims they are more sensitive than blood tests, and there are valid reasons (including the Italian studies) to support the concept, if not yet his methodology.

[AmandaD]

Thank you so much for this response - just trying to understand all the lingo and "enterolab" comes up frequently.

Enterolab is a fascinating case, really.  Dr. Fine has not yet published any peer reviewed studies (though I've heard he's working on it - since I first heard that a year ago, I'd expect it to be relatively soon, in the next year or so), but there is independent research from Italy supporting the fecal testing concept.  (That's the not same as supporting his tests, but lends some credence to the possibility.)  My understanding is that he does have completely valid credentials, and the singing thing may just be an outside-the-job hobby.  Insurance doesn't cover these tests, but he claims they are more sensitive than blood tests, and there are valid reasons (including the Italian studies) to support the concept, if not yet his methodology.

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[Rachel--24]

Personally...I believe in the validity of Dr. Fine's methods. At first I wasnt so sure but after lots of research I don't find anything to discredit him. As Tiffany already stated he has not published peer reviewed studies yet.

The reason for using Enterolab is that some people dont want to go back on gluten for blood or biopsy tests. Also there are a larger amount of people who will never test positive for Celiac yet still have the same problems with gluten. These people have Non-Celiac Gluten Sensitivity and Enterolab tests for these genes as well as celiac genes. The method of using stool rather than blood is suppoossed to detect gluten antibodies "before" there is so much damage that it will show in a biopsy. Dr. Fine says we would not want signs of a heart attack to be ignored by doctors until the heart attack actually occurs. Its the same for gluten sensitivity...we should not wait until there is so much damage that it shows on a biopsy for a doctor to validate going on a gluten free diet. If this method is true and is able to determine sensitivity before damage has occurred then it can save people from alot of misery including autoimmune diseases. Here is a link about that:

Open Original Shared Link

I believe Dr. Fine has been researching this stuff for about 30 years and I think he has Celiac himself. He is mentioned in a couple books I've read as well. I think his work was mentioned in "Dangerous Grains".

I think he sings as a hobby.

[Matilda]

..

[falwell57]

I too have had wonderful success at Enterolab. I myself was diagnosed in Jan. 05 at Mayo Clinic - total villous atrophy. I just got both of my daughters tested by Dr. Fine and the gene test showed one had 2 GS genes and the other had one celiac and one GS. They both have issues with several problems - including seizures, arthritis, IBS, Sjogren's, night terrors/panic attacks, raynauds, infertility problems, diarrhea, lactose intolerance, casein sensitivity, weight loss and who knows what else. Also, one was blood tested in May and her gastro. told her she was fine and would never have to worry - duh!! The other one went to her PCP and asked to be tested and he refused. He said he could tell by looking at her that she didn't have celiac (she is the one WITH a celiac gene).These doctors just really DON'T have a clue about the problems or varied symptoms caused by celiac disease and GS. I am SOOOOO glad I had them tested. I also want to have my grandchildren tested genetically and monitor any suspect symptoms that might come up, as my son-in-law does have some issues (lactose intol. and other stomach issues.) I want everyone in my family tested so we can stop the damage these genes can potentially cause, especially when one carries 2 copies. My sister was also blood tested and was negative, but she REALLY has problems too. She doesn't have the money to get the Enterolab tests on her own. I know now that my Mom who died at 54 was celiac (thyroid problems, miscarriages, seizures). My Dad is 89, but just carries one GS copy, and is basically unaffected. He's in better shape than I am (osteoporosis, erosive arthritis, thyroidectomy 33 years, peripheral neuropathy, lactose/casein intolerant, many brain irregularities with organizational skills, inability to focus on things, and trouble with math skills (I even taught upper level science/math years ago). My girls are both gluten-free now, for about 2 weeks. One is really struggling with the overall stress of it all, but I am optimistic. So if there's a doubt - get your family members tested when some of these symptoms start showing up. It's worth every penny!!!

[Guest jhmom]

Amanda,

Seems incredibly expensive to buy your own tests instead of seeing the doctor about something like Celiac...I'm confused.

The reason people turn to Enterolab is because many of them have taken the traditional route and been told it's IBS, all in our head, stress related, blah blah blah. I went through test after test only to be told it was IBS! I knew something else was going on so I decided to have me and my daughter tested and we both had positive results and immediately started gluten-free diet. Well a few months ago I took my daughter to her GI doc for other problems and she decided to run 2 Gene tests for Celiac and they both came back positive so it confirms everything for me along with a 100% improvement for her after going gluten-free. As for me, I also have Lupus and it affects my GI tract so things are just now getting under control for me, don't get me wrong I could tell a difference after going gluten-free but continued to have other problems.

[cornbread]

I see that his name is Kenneth Fine but I also see that he goes by Kenny "Jude" and is a singer selling celiac disease's.

<{POST_SNAPBACK}>

Hey, we all need hobbies! Also, I think the fact that he's chosen to allow the public direct access to his services (via his web site) is rather ground-breaking, and this decision should be applauded - it doesn't make him less of a doctor, it makes him more of a hero to people like me who've had their lives changed dramatically for the better thanks to his easily accessible and affordable services.

[Rachel--24]

Hey, we all need hobbies!      Also, I think the fact that he's chosen to allow the public direct access to his services (via his web site) is rather ground-breaking, and this decision should be applauded - it doesn't make him less of a doctor, it makes him more of a hero to people like me who've had their lives changed dramatically for the better thanks to his easily accessible and affordable services.

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I wholeheartedly agree. I do not think his tests are all that expensive considering the kind of money I spent trying to find answers for 3 years. Endless doctor appointments, prescriptions, tests, supplements, lost wages...it all adds up. It was all useless and a waste of my time and money. The doctors suck. My doctor told me I didnt have to be eating gluten before my bloodtest...of course it was negative and I went a whole more year of being sicker than ever and wanting to die. The money I spent for my Enterolab tests was without question the best money I ever spent! I only wish I'd done it a whole lot sooner. Dr. Fine seems to really care about people which is alot more than I can say for most of the so-called doctors I've seen. I currently have a complaint against my HMO for the way I was treated...maybe it will go all the way to arbitration...maybe I'll just forget about it because I'm feeling good now. I know I'll never trust doctors again after this nightmare though.

[alanalynch]

Is the Dr. that runs this lab kosher? 

Just imagine for a second that Dr Fine is not kosher, and that he doesn't exist, and that we all sent our poop off to some non-existent address while he partied in Tahiti with our money. I seriously thought about this after my positive results. I mean, its not like any of us have ever met him in person...or maybe ever will. The worst thing was when I realised I had mentioned in my questionaire that I had in fact been positively diagnosed with gluten sensitivity via bloodwork. Was this why I had been found positive??

I DOUBT IT!!

I don't think I need to meet Dr Fine in person to know he is doing amazing things. Plus, if you are going to run a scam involving making money out of medical conditions, why ask people to send their poop? Of all the things a person could do as a scam, this seems the most revolting and unlikely.

Plus, if you email Enterolab you can get a pretty rapid and informative response from Phyllis, and info sent to you in the mail, although it is disconcerting that the phone is very rarely answered. I'm guessing this is because it just goes directly to the lab. And I agree the CDs that Dr Fine is seen selling online are pretty strange for a specialist, however I just think he is passionate. All though, if you are reading this Dr Fine, some input from you would be helpful about now,

[Rachel--24]

The worst thing was when I realised I had mentioned in my questionaire that I had in fact been positively diagnosed with gluten sensitivity via bloodwork.  Was this why I had been found positive??

<{POST_SNAPBACK}>

My questionaire stated that yes, I had been tested via bloodwork and those results were negative. However my Enterolab results were positive.

The most convincing results for me were the results of the malabsorption test. I had been complaining of malabsorption for a year and it fell on deaf ears. My doctors were adamant that I did NOT have malabsorption even though I had lost 25 lbs. in a few months time. They ran one test (albumin) which they said was normal and I just needed to eat more. They ignored me when I said my food was coming out undigested and that the more I ate the more weight I seemed to lose.

Enterolab results were positive for malabsorption with a score of 912. I havent seen anyone with a score this high and most seem to come back under 300 or close to it. I don't think Dr. Fine could have randomly picked me for such a high malabsorption score....he could not even know the situation I was in. I did not put any info about malabsorption on the questionaire.

I recently tested again for egg and yeast and these came back negative as did the milk test.

My gluten numbers were not high positives to correspond with my high malabsorption but then again the numbers don't indicate severity.

I don't think I need to meet Dr Fine in person to know he is doing amazing things.

I agree...I believe his methods will be widely accepted sometime in the future.

[AmandaD]

Thank you all for your input. It is very much appreciated. I ask the question because through my Celiac support group I have a mentor who comes to my house. She mentioned that the group on a whole (I think I've got this right) knew of Fine, but were cautious with the information. I mentioned it to her because I had considered looking into some of the milk allergy testing.

I am also wondering if all of you who have used Enterolab - and you'll have to excuse me if some of you already posted about this - basically had Celiac tests done, but were still feeling that Celiac was the problem? Is that correct?

I have a questions for anyone who may have an opinion or is really knowledgeable on this topic.

I hear a lot of people mentioning that they've been diagnosed by Enterolab and have had different panels run, etc.  Is the Dr. that runs this lab kosher?  I see that his name is Kenneth Fine but I also see that he goes by Kenny "Jude" and is a singer selling celiac disease's.

Is Enterolab testing valid or is it questionable? Is this "expert" valid or is he questioned in the medical community?

Seems incredibly expensive to buy your own tests instead of seeing the doctor about something like Celiac...I'm confused.

Thanks for your responses in advance...

<{POST_SNAPBACK}>

[AmandaD]

I meant to say had tests done that were negative and then still feeling Celiac was the prob?

I am also wondering if all of you who have used Enterolab - and you'll have to excuse me if some of you already posted about this - basically had Celiac tests done, but were still feeling that Celiac was the problem? Is that correct?

<{POST_SNAPBACK}>

[Rachel--24]

I meant to say had tests done that were negative and then still feeling Celiac was the prob?

<{POST_SNAPBACK}>

I had bloodtests first then Enterolab a year later. I was told of Celiac and tried out the diet first. I asked my doctor to test me for Celiac but was already gluten-free (only 2 weeks though). During the time I was trying the diet I was feeling a little better but my results were negative so I moved on with trying to figure out what was wrong with me.

When I went back to a normal diet I got progressively worse...way worse then before I had went gluten-free. I lost 25 lbs. and decided to go on a strict diet of meat, veggies, eggs and fish....my health dramatically improved but I still had no answers. The doctors were telling me it was in my head. I finally came to this message board and learned of Enterolab...I didnt want to eat tons of gluten again for retesting since my weight was extremely low so Enterolab seemed perfect. I got positive test results 2 months ago today and I've only had a handful of bad days since.

[Matilda]

..

[Rachel--24]

They question is, whether you believe they are valid tests, given that so many more people get positive results this way. There's no evidence yet that all those people with stool antibodies are healthier off gluten, other than all the stories like Rachel's that you read here.

<{POST_SNAPBACK}>

Yeah....I wonder about this myself.

Something like 70% have positive stool tests. Do you think this is because the vast majority of people paying for these tests already suspect a gluten problem and are already symptomatic, have family members with gluten sensitivity or are there just *that* many people out there who react negatively to gluten w/ or w/out symptoms?

After reading Dangerous Grains it makes me believe that gluten is just bad for us *period*. That probably a huge number of people would come back positive in the stool because gluten is not something we are meant to eat and our bodies react negatively to it.

[alanalynch]

Enterolab seemed a good option just to give me some back up. Dr Fine's arguement that antibodies are found in the bowel first seemed logical and there are studies that back this up.

<{POST_SNAPBACK}>

I think this was probably the main reason for me to use Enterolab too. That and the fact that I just didn't want to deal with any more doctors in person. I do still wonder sometimes about Dr. Fines tests, mostly if they might be disproven oneday, however I prefer to see myself as one of the pioneers willing to try something new in order to help things change...and boy do they need changing!

I mean, I wonder how much fuss would be made if people with undiagnosed heart disease were told to come back for tests only when their heart had actually stopped. I'd suspect a whole lot'a fuss! Celiacs need to make just as big a fuss so that these tests can become main stream and not so suspicious.

[jojoe72]

Hi,

I was hoping some of you may give me some insight to some test results I got back. I've been suspicious of celiac disease for the past 3 months after reading about the symptoms. I also just got tested through Enterolab and my results were 15 units Fecal Antigliadin Iga (they said that's very high) and 10 units Fecal Antitissue Transglutaminase (on the high end also). I also was positive for the HLA-DQB1*0302, 0301 gene. My question is how accurate are these tests? Should I go and have a biopsy done to verify? I was on a somewhat gluten free diet when I took the test (I didn't know any better). I'm really confused but after reading about this disease, I'm almost positive it's whats been making me sick since I was a kid. Any help would be greatly appreciated.

Thanks

Joe

[AmandaD]

Joe - I don't know if this is going to help - but what the heh...I'm the one who posted the original question on Enterolab. I'm a reporter and I'd say I'm rather skeptical of any lab where you don't actually meet the doctor who runs it (although I've heard that it is extraordinarily helpful for some people).

I went to a g.i. doc (thought i had irritable bowel) for the ttg blood test (celiac antibody) and it came up a low positive...my doc said the only gold standard diagnosis for Celiac was the actual endoscopy where they take a bunch (I mean like 8 or 9) samples of your small intestine, look at them and see if there are increased lymphocytes and villi blunting. Upon doing the endoscopy they did confirm there was some mild damage and I have celiac sprue (it also happens to run in my fam...).

If you're sure Celiac is what's making you sick, I really, really think the best route is not to just diagnose yourself through the tests. I think it would be really helpful to go to your main doctor or a g.i. doc...show them the Enterolab stuff and ask to have it verified through your doc. If they're on top of things they'll do the ttg bloodwork themselves and they'll do the endoscopy if they feel the blood results point to sprue. I think it's really important to stick with your doc because if you do have sprue it's important you get follow up bloodwork to see how you're absorbing things like Vitamin D, etc...pretty much so they can keep an eye on you and keep you healthy.

I'm sure as heck no expert..but this is what I've learned in the short 6 weeks I've been newly diagnosed. I may sound pro-doctor but it's because I've really had a good positive relationship with them.

Let me know what you think - AD

Hi,

I was hoping some of you may give me some insight to some test results I got back. I've been suspicious of celiac disease for the past 3 months after reading about the symptoms. I also just got tested through Enterolab and my results were 15 units Fecal Antigliadin Iga (they said that's very high) and 10 units Fecal Antitissue Transglutaminase (on the high end also). I also was positive for the HLA-DQB1*0302, 0301 gene. My question is how accurate are these tests? Should I go and have a biopsy done to verify? I was on a somewhat gluten free diet when I took the test (I didn't know any better). I'm really confused but after reading about this disease, I'm almost positive it's whats been making me sick since I was a kid. Any help would be greatly appreciated.

Thanks

Joe

<{POST_SNAPBACK}>

[alanalynch]

antibody) ...my doc said the only gold standard diagnosis for Celiac was the actual endoscopy where they take a bunch (I mean like 8 or 9) samples of your small intestine, look at them and see if there are increased lymphocytes and villi blunting.  Upon doing the endoscopy they did confirm there was some mild damage and I have celiac sprue (it also happens to run in my fam...).

<{POST_SNAPBACK}>

Well in Australia my blood tests were considered enough for my doctor to tell me to stop eating gluten. Why is America being so anal about having the endoscopy???

[cheryl50]

I'm a reporter and I'd say I'm rather skeptical of any lab where you don't actually meet the doctor who runs it

I've had tons of labwork done the past 3 years through my HMO and I never met anyone running these tests... I'm a little skepical of whatever lab they use because they were telling me I had no malabsorption when I clearly did! I lost 25 lbs. out of nowhere and my food was undigested. Enterolab correctly diagnosed me with malabsorption so I don't really need to meet the guy....unless it was only to thank him.

Joe,

Personally I wouldn't rely on the biopsy. It can only rule Celiac in but it can't rule it out. It will only be positive if there is enough villi damage and if you've not been on a gluten-free diet. Lots of people with Celiac don't have positive biopsies and those with Non-Celiac gluten sensitivity likely will never have a positive biopsy but this doesnt mean damage is not being done to tissues in the body. A doctor who considers the biopsy the "gold standard" is likely to dismiss positive antibodies as a "false negative" just because damage is not visible yet. If the biopsy is negative it doesn't mean you dont have celiac and it doesnt mean that you don't need to be gluten free. You already have positive test results the next step would be to see if you have a positive response to the diet. If you do then you have your answer.

If you're already on the diet you'll have to load up on gluten for several weeks to "maybe" get a positive biopsy.

Since we're talking about Enterolab and Dr. Fine on this thread I will mention that the biopsy for Celiac is something like 50 years old. Dr. Fine considers this the "Old Standard" rather than the "Gold Standard". The fact is that it probably misses more Celiacs than it actually diagnoses. For those who have Non-Celiac Gluten Sensitivity....you are out of luck as far as the biopsy goes yet you may be suffering just the same as someone with full-blown celiac.

I had my biopsy 2 weeks ago...no results yet. The doctors failed to diagnose me or run the tests/biopsy while I was sick and eating gluten. I got diagnosed through Enterolab on my own after 4 months of being on a mostly gluten-free diet. The tests were positive and now the doctors finally did the biopsy....much too late. I refused to go back on gluten for any tests and therefore w/out question my biopsy should be negative. I just wanted him to check and be sure nothing else was going on...he did some other things besides the biopsy and I'm just waiting for my results.

In my opinion the biopsy is a "hit or miss". If you decide to go ahead with it just keep in mind that if its negative it doesnt rule out Celiac. The person who started this thread was lucky in having a positive experience with her docs and her diagnosis. I think the majority are not that lucky and so as a result we have to put more effort into getting the best diagnosis we can for ourselves. For some it is the diet alone. For me it was Enterolab and the positive results from the diet. I've come a long way in the past 2 months and I didn't need the help of any doctor. All they did for me in the past 3 years was make me sicker. I educated myself by reading books, online research and of course the people on this board have helped me more than I could've ever imagined.

Good luck with getting your answers

[Rachel--24]

Ooops...I posted on my Mom's username.

The last post was from me.

[Rachel--24]

Well in Australia my blood tests were considered enough for my doctor to tell me to stop eating gluten.  Why is America being so anal about having the endoscopy???

<{POST_SNAPBACK}>

Ummm...I think cuz the doctor's here suck.

Thats just my opinion and my experience.

[Nevadan]

Hi,

I was hoping some of you may give me some insight to some test results I got back. I've been suspicious of celiac disease for the past 3 months after reading about the symptoms. I also just got tested through Enterolab and my results were 15 units Fecal Antigliadin Iga (they said that's very high) and 10 units Fecal Antitissue Transglutaminase (on the high end also). I also was positive for the HLA-DQB1*0302, 0301 gene. My question is how accurate are these tests? Should I go and have a biopsy done to verify? I was on a somewhat gluten free diet when I took the test (I didn't know any better). I'm really confused but after reading about this disease, I'm almost positive it's whats been making me sick since I was a kid. Any help would be greatly appreciated.

Thanks

Joe

<{POST_SNAPBACK}>

Joe,

Here's my Enterolab experience as far as it goes: I self-diagnosed by alternating gluten-free/non-gluten-free (3 times -I'm a true skeptic, or maybe just a slow learner) after reading an article reporting that osteoporosis and celiac disease are often concurrent - I'm a male w/osteo. I found some gastro symptoms that I had come to accept as normal went away withing 48 hrs each diet cycle, so I concluded that my body and gluten didn't get along and went gluten-free. A few weeks later I had testing by Enterolab (Antigliadin IgA = 22, Antitissue Transglutaminase IgA = 17, Fecal Fat Score = 84, HLA-DQB1*0602,0602) which was consistent with my self-diagnosis. Of particular significance were the DNA results which say based on several leading researchers my probability of having villi damage is small; however, this set of HLA-DQB1 genes predisposes me for several other health problems, particularly neurological ones (a couple of which I already recognized before testing). One description of this is that "celiac disease is only the tip of the gluten sensitive iceberg". DNA testing has become pretty reliable (I think I read somewhere on Enterolab's website that they subcontract their DNA testing to an outside DNA lab), so I have reasonable confidence in my DNA results. Regarding the other Enterolab results, it is very unfortunate that Dr. Fine has not submitted his procedures for peer review - I suspect that is a strictly monetarily motivated entrepreneurial thing (been there, done that). As a scientist myself I have major reservations about these other tests due to lack of peer review. However, I do think that the research in non-celiac disease gluten sensitivity is creditable and is very slowly becoming accepted based on peer review. Bottom line is that for those of us with non-celiac disease GS genes, the DNA testing and improvement of symptoms on a gluten-free diet are significant enough. If Dr. Fine's other testing survives peer review, it will be a major contribution to gluten sensitivity testing. Meanwhile I choose to err on the side of believing that gluten is bad news for a lot of us.

Joe, as I understand your DNA numbers, you, like me, are not likely to ever have true celiac disease (villi damage); therefore, conventional endoscopy testing will probably never diagnose your likely gluten sensitivity which may lead to some very undesirable health problems. I recommend reading "Dangerous Grains" by Braly & Hoggan for a pretty good summary of the latest research on non-celiac disease GS regarding what it might mean for your future health. If you have doubts about Enterolab, I would focus on finding another lab to verify the DNA results as a first step.

Meanwhile a gluten-free diet is very healthy even if a bit of a nuscience and frustrating at times. We could be in much worse health situations.

I hope this helps.

George

[Nevadan]

I have a questions for anyone who may have an opinion or is really knowledgeable on this topic.

I hear a lot of people mentioning that they've been diagnosed by Enterolab and have had different panels run, etc.  Is the Dr. that runs this lab kosher?  I see that his name is Kenneth Fine but I also see that he goes by Kenny "Jude" and is a singer selling celiac disease's.

Is Enterolab testing valid or is it questionable? Is this "expert" valid or is he questioned in the medical community?

Seems incredibly expensive to buy your own tests instead of seeing the doctor about something like Celiac...I'm confused.

Thanks for your responses in advance...

<{POST_SNAPBACK}>

AmandaD,

I share your skepticism re Enterolab, but I did submit for their testing after self-diagnosing some gluten sensitivity by diet changes. As a scientist myself I too am concerned about the testing that has not been peer reviewed; however, I have some confidence in the DNA testing done by Enterolab (I read somewhere that they acutally subcontract to an independent DNA lab). Even if their non-DNA testing is invalid, it does seem to provide more benefits than not. Given the dire nature of celiac disease (pretty well accepted) and reports by leading researchers regarding the risks of non-celiac disease gluten sensitivity, I believe that in a risk-reward analysis Enterolab would win hands down. What is there to lose: the gluten-free diet is very healthy even if it is a nuscience and frustrating at times. The possible (likely, I believe) alternative of continuing to eat gluten is far worse. I doubt that anyone would be harmed by Enterolab and just from forums such as this, one can observe many people who feel they benefited - that's a better track record than conventional doctors with respect to diagnosing gluten problems.

This is just my opinion.

George