Enterolab Credibility

[lsedels]

Folks,

My mom, 91 y/o, was recently diagnosed with Collogenous Colitis. Uceris is working, but sooner or later, she will have to come off it. An elimination diet (as I understand it) could take years to uncover individual antigens. And the Enterolab tests are very expensive.

My mom (and the relatives and friends that she talks to) are asking some very good questions about this. Why ... if this Enterolab testing is SO good and SO credible ... is there only one lab in the country that offers it? Why wouldn't insurance cover it? Why ... do the gastroenterologists ... in spite of what is a very high relapse/recurrence rate for this disease ... dismiss the idea of antigens and the Enterolab tests?

I was told privately that Dr. Fine's work has been somewhat "derailed" and dismissed by the greater medical community. Why? If his work is SO valid and SO credible ... why? I understand that there have been many successful experiences here, and so does my Mom. But regardless, the circumstances and the facts do cause one to ask these questions.

I have to admit, being the objective analytical person I am, I agree. I had a similar experience a few months back when I developed some severe "floaters" in one eye. I did some research and found three doctors in the US that have developed laser techniques to address them. I went to no less than 4 opthamologists including two retina specialists, the last one who has done much published research on floater. He told me that those three doctors are an "absolute disgrace to the medical community". I asked why. He told me because none of them have published objective studies or scientific clinical trials that speak to the efficacy, side effects, and risks of their treatment. And you know what? He's right to call the treatment into question without a thorough and objective understanding of the risks.

One of my relatives has Ulcerative Colitis and she is going to ask a very big gastro affiliated with Mount Sinai in NYC about this test before my Mom spends a lot of money on it. I fear that he will say the same thing that other physicians have said ... she can eat whatever she wants and he doesn't know about these tests and if she didn't test positive for Celiac, she doesn't need Gluten Free.

So ... what are people's thoughts on this? To say that there is a community of patients (from across the internet) that have benefitted from the Enterolab tests is fine and I respect that. But this is subjective information and only goes so far. Why has Dr. Fine's work been so "rejected" and why don't other labs offer it? Especially if it's been so successful?

Thanks for your help.

[tex]

Hi Larry,

This question comes up so often that I hope I can remember to bookmark this topic, so that I can point to it the next time someone asks about it.

I'll try to address your questions.

Why ... if this Enterolab testing is SO good and SO credible ... is there only one lab in the country that offers it?

Because Dr. Fine holds exclusive international patents on the tests, and he chose to not license them to any other labs. The primary reason why he chose not to license other labs is because the tests are based on the tried and proven ELISA testing methods, and ELISA tests require operator judgment in interpreting the results. That means that different operators will sometimes interpret the results differently, in certain situations. Because of that, most labs often produce inconsistent results (if you doubt that, just split a blood test sample or whatever, and send the samples to 2 or 3 different labs, or to the same lab, on different days, for that matter). At EnteroLab, only one person (who holds a PhD in chemistry) does every test. That guarantees consistency, and consistency is everything when it comes to interpreting lab tests. And that's why they have such an outstanding record for accuracy.

Anyone can look up the patents online, if they know what they're doing. Here's an example:

http://www.freepatentsonline.com/6667160.html

Why wouldn't insurance cover it?

Some insurance companies are beginning to cover the tests, as more doctors are willing to order them. The main reason why many still don't cover the tests is because no one has pushed them to do so. They're in business to make money, not to pay for tests that they don't have to pay for (IOW, tests that most doctors don't use).

Why ... do the gastroenterologists ... in spite of what is a very high relapse/recurrence rate for this disease ... dismiss the idea of antigens and the Enterolab tests?

Because that's what they're taught in medical school, and it's the accepted standard industry convention, and if they ignore those guidelines, they make themselves vulnerable to litigation, if anything goes wrong, or if a disgruntled patient decides to file a malpractice suit for any reason. The wheels of progress turn slowly in the gastroenterology world, especially when it comes to food sensitivities. Hell, it still takes them an average of 9.7 years to diagnose the average celiac patient, from the onset of symptoms, until an official diagnosis is made. That's a ridiculous length of time to have to suffer because doctors don't know now to diagnose the disease any sooner. Surely we can't expect them to try to understand and treat a complex disease that's associated with multiple food sensitivities, such as MC.

I was told privately that Dr. Fine's work has been somewhat "derailed" and dismissed by the greater medical community. Why? If his work is SO valid and SO credible ... why?

Early on, mainstream medicine blacklisted him because he decided to sell his services direct to patients, over the internet. Few things piss off mainstream doctors more than a lab that cuts them out of the loop. They hate it so much that the doctors in New York state, and Maryland managed to successfully lobby their state legislatures to get laws passed that make it illegal for residents of those states to order test from across state lines (and of course there are no labs that deal directly with patients inside the borders of those states, either).

When a doctor is blacklisted, he's blacklisted. If you will search the literature, you'll find that Dr. Fine had numerous scholarly medical research articles published in prestigious, peer-reviewed medical journals, prior to the opening of his lab. That abruptly stopped when he opened the lab — not because he hasn't tried to have his articles published, but because the "Good Old Boys Club" in mainstream medicine make sure that none of his articles make it through the acceptance process.

Why has Dr. Fine's work been so "rejected" and why don't other labs offer it? Especially if it's been so successful?

This appears to be a redundant question. See my responses above.

Enterolab was founded by Dr. Kenneth Fine, roughly 14 years ago. Dr. Fine has MC himself, which is the reason why he started researching the disease, in the first place. He is the person who discovered the link between diet and MC, and he is the creator of the "Pepto-Bismol" treatment, (he developed it over 15 years ago, but many GI docs are just now beginning to recognize it as a possible treatment for MC).

Enterolab is a fully accredited lab, and since it is located in Dallas, Texas, you can check his professional reputation online, at the Texas Board of Medical Examiners. The last time I looked, he had zero negative entries on his record.

Larry, please keep this in mind: Everyone who doesn't have this disease pretends to know much more about it than the people who do have it. Doesn't that strike you as kind of odd? But if your mom's friends and relatives do know more about it, then they should be able to tell your mom how to go about getting her life back, and I'll bet that their plan will be much easier to follow, since it won't require any out-of-pocket lab costs, or diets that are difficult to follow.

Tex

[JLH]

The people who use EnteroLab don't criticize it, but the opposite seems to be true.

Tex usually explains why the stool test is good and reliable. You can do a PP search.

I sent links for an Italian lab that also does stool testing.

Good luck, Larry.

[nerdhume]

For some reason drs seem to discount any treatment other than more drugs. I saw pics of Pyoderma gangrenosum on the Facebook UC page here:
https://www.facebook.com/ihaveuc

I'm guessing this would be more likely to happen if the patient is taking the immune suppressants, along with several other side effects almost as much fun.

Why will people take all those meds and not even try to change their diet?

I also think it is hard to quantify dietary changes because people tend to forget, exaggerate, or just plain lie about what they ate, and the effects, both good and bad have to be reported by that same patient. There is really no hard science like 'lowering blood pressure' or something more measurable.

I remember being skeptical when I first came to this group.....now I can tell you 'the proof is in the pudding'.

[lsedels]

Hi Larry,

This question comes up so often that I hope I can remember to bookmark this topic, so that I can point to it the next time someone asks about it.

I'll try to address your questions.

Why ... if this Enterolab testing is SO good and SO credible ... is there only one lab in the country that offers it?

Because Dr. Fine holds exclusive international patents on the tests, and he chose to not license them to any other labs. The primary reason why he chose not to license other labs is because the tests are based on the tried and proven ELISA testing methods, and ELISA tests require operator judgment in interpreting the results. That means that different operators will sometimes interpret the results differently, in certain situations. Because of that, most labs often produce inconsistent results (if you doubt that, just split a blood test sample or whatever, and send the samples to 2 or 3 different labs, or to the same lab, on different days, for that matter). At EnteroLab, only one person (who holds a PhD in chemistry) does every test. That guarantees consistency, and consistency is everything when it comes to interpreting lab tests. And that's why they have such an outstanding record for accuracy.

Anyone can look up the patents online, if they know what they're doing. Here's an example:

http://www.freepatentsonline.com/6667160.html

Why wouldn't insurance cover it?

Some insurance companies are beginning to cover the tests, as more doctors are willing to order them. The main reason why many still don't cover the tests is because no one has pushed them to do so. They're in business to make money, not to pay for tests that they don't have to pay for (IOW, tests that most doctors don't use).

Why ... do the gastroenterologists ... in spite of what is a very high relapse/recurrence rate for this disease ... dismiss the idea of antigens and the Enterolab tests?

Because that's what they're taught in medical school, and it's the accepted standard industry convention, and if they ignore those guidelines, they make themselves vulnerable to litigation, if anything goes wrong, or if a disgruntled patient decides to file a malpractice suit for any reason. The wheels of progress turn slowly in the gastroenterology world, especially when it comes to food sensitivities. Hell, it still takes them an average of 9.7 years to diagnose the average celiac patient, from the onset of symptoms, until an official diagnosis is made. That's a ridiculous length of time to have to suffer because doctors don't know now to diagnose the disease any sooner. Surely we can't expect them to try to understand and treat a complex disease that's associated with multiple food sensitivities, such as MC.

I was told privately that Dr. Fine's work has been somewhat "derailed" and dismissed by the greater medical community. Why? If his work is SO valid and SO credible ... why?

Early on, mainstream medicine blacklisted him because he decided to sell his services direct to patients, over the internet. Few things piss off mainstream doctors more than a lab that cuts them out of the loop. They hate it so much that the doctors in New York state, and Maryland managed to successfully lobby their state legislatures to get laws passed that make it illegal for residents of those states to order test from across state lines (and of course there are no labs that deal directly with patients inside the borders of those states, either).

When a doctor is blacklisted, he's blacklisted. If you will search the literature, you'll find that Dr. Fine had numerous scholarly medical research articles published in prestigious, peer-reviewed medical journals, prior to the opening of his lab. That abruptly stopped when he opened the lab — not because he hasn't tried to have his articles published, but because the "Good Old Boys Club" in mainstream medicine make sure that none of his articles make it through the acceptance process.

Why has Dr. Fine's work been so "rejected" and why don't other labs offer it? Especially if it's been so successful?

This appears to be a redundant question. See my responses above.

Enterolab was founded by Dr. Kenneth Fine, roughly 14 years ago. Dr. Fine has MC himself, which is the reason why he started researching the disease, in the first place. He is the person who discovered the link between diet and MC, and he is the creator of the "Pepto-Bismol" treatment, (he developed it over 15 years ago, but many GI docs are just now beginning to recognize it as a possible treatment for MC).

Enterolab is a fully accredited lab, and since it is located in Dallas, Texas, you can check his professional reputation online, at the Texas Board of Medical Examiners. The last time I looked, he had zero negative entries on his record.

Larry, please keep this in mind: Everyone who doesn't have this disease pretends to know much more about it than the people who do have it. Doesn't that strike you as kind of odd? But if your mom's friends and relatives do know more about it, then they should be able to tell your mom how to go about getting her life back, and I'll bet that their plan will be much easier to follow, since it won't require any out-of-pocket lab costs, or diets that are difficult to follow.

Tex

Thanks, Tex. I get that he holds a patent and I guess that kinda explains it to some degree. But I have to tell you that ELISA tests are nothing new - they are done for all kinds of diseases to analyze (for example) the bone marrow for cancer patients. Every lab test known to man is subject to interpretation variations from lab to lab - it is an accepted and known consequence of pathology and medical lab testing. It still strikes me as strange that a major university medical center (where ELISA tests are commonly done) wouldn't have picked up on this and want to do it to help their patients. Perhaps there are other political reasons at play here as you've outlined.

[carolm]

Larry, My GI doc DOES believe diet plays a role in MC disorders. She said she's seen it improve many, many times when diet changes are made. She offered to order the Enterolab tests. When I stopped taking Entocort (2 1/2 years ago) and didn't relapse that was proof positive that I was on my way to healing and remission. She said she was very impressed with how well I managed my disease. Without the diet changes and the advice of this board, I have no doubt I would be on disability, unable to work, and probably still on steroids.

I was gluten free, dairy free and later soy free while on Entocort (for 4 1/2 months). Once I was off of Entocort I had the Enterolab tests done. For me it provided confirmation that I was on the right track, and a short cut as to what other foods I needed to be wary of, as well as what foods I could include. Knowledge is power and that power helped me to get my life back the quickest way possible. When I received my diagnosis and found this PP site there were 1000 members, mostly people who had had MC for years and were now in remission. Why would I NOT do what it takes to get into remission? People here had taken the journey-- I would have been a fool to doubt them.

I'm sorry that your mom is suffering. You and she can continue to listen to the advice of others who have do not have MC and see where that gets you (probably lots of prescribed meds I would guess). Or you can a look at what people who actually live with the disease have done. This really isn't guess work on the part of PP. I've watched the strategies here work repeatedly person after person. Do I care that some BIG GI doc doesn't buy it? Hell no. He doesn't live in my shoes nor do I think that doctors know everything. But not all GI docs disregard the notion of diet causing inflammation. Mine is one.

Anyway, that's my 2 cents. I'm concerned, Larry, that you are talking to people who really don't know MC.... including your doctors.

Best wishes,
Carol

[Deb]

Amen, Carol. Deb

[lsedels]

Larry, My GI doc DOES believe diet plays a role in MC disorders. She said she's seen it improve many, many times when diet changes are made. She offered to order the Enterolab tests. When I stopped taking Entocort (2 1/2 years ago) and didn't relapse that was proof positive that I was on my way to healing and remission. She said she was very impressed with how well I managed my disease. Without the diet changes and the advice of this board, I have no doubt I would be on disability, unable to work, and probably still on steroids.

I was gluten free, dairy free and later soy free while on Entocort (for 4 1/2 months). Once I was off of Entocort I had the Enterolab tests done. For me it provided confirmation that I was on the right track, and a short cut as to what other foods I needed to be wary of, as well as what foods I could include. Knowledge is power and that power helped me to get my life back the quickest way possible. When I received my diagnosis and found this PP site there were 1000 members, mostly people who had had MC for years and were now in remission. Why would I NOT do what it takes to get into remission? People here had taken the journey-- I would have been a fool to doubt them.

I'm sorry that your mom is suffering. You and she can continue to listen to the advice of others who have do not have MC and see where that gets you (probably lots of prescribed meds I would guess). Or you can a look at what people who actually live with the disease have done. This really isn't guess work on the part of PP. I've watched the strategies here work repeatedly person after person. Do I care that some BIG GI doc doesn't buy? Hell no. He doesn't live in my shoes nor do I think that doctors know everything. But not all GI docs disregard the notion of diet causing inflammation. Mine is one.

Anyway, that's my 2 cents. I'm concerned, Larry, that you are talking to people who really don't know MC.... including your doctors.

Best wishes,
Carol

Carol,

Thank you for the response.

I'm not doubting you. But you have to understand that the way the medical world works is treatment is based on objective facts, objective studies/research using the scientific method, and the results. It is natural for a new patient to want to know what their doctor recommends and what he/she recommends against. It is natural for a patient to attempt to corroborate this or not ... by going for 2nd and perhaps even 3rd opinion. But when the objective medical evidence doesn't confirm this treatment is viable ... and it's difficult to find a physician who supports going against that evidence, it's natural for the typical patient to question why they should follow the advice of 1000 people who claim otherwise (especially across the internet, which we are all constantly warned never to take medical advice from) ... even if they all say that they have been through it themselves.

Again, I'm not doubting that you or anyone else here has a success story with Enterolab or with GF diets or with treating this disease with diet modifications. I'm just trying to communicate the issue and why people question this.

[Deb]

Larry, obviously you haven't found the answers from your doctors that you were looking for or you wouldn't be here. I think that is the case for most of us. When I was diagnosed with MC I was told very little other than it was "not serious". With further research I learned it could be chronic and/or last for a couple of years or longer. I knew that with the symptoms I had, that wasn't acceptable. I was unwilling to give in to this disease and allow it to control my life. This site gave me more information than any doctors (my PCP is Mayo Clinic). In fact my PCP was very interested to hear how I have controlled symptoms and was going to suggest some of her other patients try, at least, going gluten free. The medical community is several years behind what I have learned is working for my health, in my opinion. Take the information or not. It is working for thousands of us. Deb

[tex]

It still strikes me as strange that a major university medical center (where ELISA tests are commonly done) wouldn't have picked up on this and want to do it to help their patients. Perhaps there are other political reasons at play here as you've outlined.

The major university medical centers are part of the problem. That's where medical students learn that the way to treat disease is to prescribe drugs. There's no money for doctors in teaching patients how to make diet changes. And even more importantly, patients don't want to make diet changes (just ask your mother). They would rather pop a pill, regardless of the risks, and regardless of the fact that most treatments only provide temporary relief.

So the point is, that's why doctors don't take anything more than the most basic nutritional courses in medical school. They don't see any point in learning more, and patients don't expect to be told how to treat disease by means of diet changes — they want a serious treatment, namely one that involves a prescription for a potent pill. Besides, repeat visits are the bread and butter of the medical world. They're not interested in preventing disease — their goal is to treat it . . . forever, hopefully.

But when the objective medical evidence doesn't confirm this treatment is viable ... and it's difficult to find a physician who supports going against that evidence, it's natural for the typical patient to question why they should follow the advice of 1000 people who claim otherwise (especially across the internet, which we are all constantly warned never to take medical advice from) ... even if they all say that they have been through it themselves.

Larry, it's pretty clear that you are completely missing the point. If the mainstream medical community were able to effectively treat this disease, we wouldn't be here, because there would be no need for us to be here. There are plenty of other MC boards available for patients who are satisfied with the treatments prescribed by their doctors.

I may be wrong, but I think the handwriting is on the wall. I feel badly that we weren't able to help you or your mother, after all our efforts to provide you with the best information that we are aware of, but one has to be willing to take responsibility for one's own health and do whatever is necessary to control this disease, because it's a tough disease to control. And it's pretty clear that your mother isn't willing to do that. The lab is irrelevant. If she doesn't trust the lab, she could track down her food sensitivities by means of an exclusion diet, followed by trial and error testing. But the fact that your mother is coming up with excuses about why she shouldn't trust a lab that tests for food sensitivities is pretty clear evidence that she's not sufficiently motivated to do what she needs to do in order to control her symptoms by diet. And it's pretty clear that you don't trust us (or EnteroLab) either.

But I can understand that, because you don't know us. So it's natural for you to be suspicious of us — after all, this discussion and support board has only been here helping people who have MC for a little over 9 years.

So I apologize for the time that you wasted posting here, and I apologize for our shortcomings — unfortunately we don't seem to have the eloquence that might have otherwise enabled us to present our experiences in a more convincing light.

And I apologize to all of the members here who wasted their time responding to your posts, because they had a sincere desire to try to help you and your mother.

Clearly you don't trust us or EnteroLab, primarily because (as you have laid out in your explanations) you trust the mainstream medical community and you don't trust anything that they don't endorse, so I assume that you must be satisfied with their treatment program for MC. So my question is, "Why are you here"? You could see how we controlled our symptoms before you ever wrote that first post.

Tex

[Gabes-Apg]

Larry,

Step away from MC for a minute.
Big picture; The medical systems, the set up of them, how they function, how conditions are coded, recommended protocols for treatment, the profits passed to countries to support these health system etc etc is all governed by big pharma.

Majority of research dollars are spent justifying a new medication, that the pharma company owns a patent for, and will make big profit from.

The health professionals that take a wholistic approach, that base treatment on diet, correcting nutrient/mineral deficiencies get rejected from mainstream medicine.
Why??? Because no one makes million dollar profits if the treatment protocol is diet, and off the shelf nutrient and mineral supplements.
This applies to so many mainstream common conditions, not just IBD's, it applies to heart disease, diabetes, depression and anxiety, hypertension, pretty much all the conditions that all the pharmaceutical companies have made BILLIONS of dollars of profit from.

I empathise with your situation and current conundrum.
Do you believe a doctor, or multiple doctors (none of which have spent any time living with this condition)???
Or do you listen to a group of people, who have experienced chronic symptoms, spent days, weeks and for some months, trapped in the bathrooms because of constant diarrhea.
In amongst the group there are scientists, intelligent members have spent many years researching, reading and summarising various medical studies that do scientifically prove everything that has been said to you thus far.

Sadly, majority of life is blind faith.
If a doctor prescribes a medication does he guarantee it will work???
All the people that end up with worse health issues from medications or procedures, do they get any guarantees??

Best wishes for your pursuit of answers to make the decision.

[Gabes-Apg]

Larry,
Just want to add, I hope your mum appreciates the time and energy you have been putting into all of this.

Finding out that there is no quick fix, is hard enough for most that find this forum.
To then try and quantify/justify the diet, the testing and 'sell' that concept to your mum would not be easy.
It's a tough gig for you.

If you want a supportive ear I am happy to have a chat, only hiccup is that I am in Aus, so it is not cheap per say.

[lsedels]

You all have misunderstood my statements and you have overreacted.

First of all, look back on my posts. Nowhere did I say that my Mom has refused to do anything said here or heed any advice. There is simply some (what I would consider healthy) skepticism from people that she is discussing this with.

But given the facts and the circumstances, if you cannot understand why a group of people who are new to this disease (including myself) would question Enterolab then I'm not quite sure what to say. Step back for a minute, detach yourselves from the natural "bias" that you would feel after having been involved here for so long and so deeply, and imagine yourself trying to make treatment decisions about a disease like this (or any disease, for that matter). People are struck with all kinds of ailments, injuries, and diseases every day. Picture yourself diagnosed with a new burdensome disease. Do you really think it's so natural and so blatently obvious to follow the path that a group of people on the internet recommend (that costs > $500, btw) and use the only practitioner in the entire country who has adopted a certain medical strategy ... when none of the medical community that you have sought out so far corroborates that strategy? Don't you think you'd look at something like that with some skepticism and want to understand why the circumstances are what they are? And don't you think it might not be so easy to just follow a recommendation like that?

That's all I was trying to accomplish with my posts. It's not that I don't appreciate the time and effort that you have all expended to try to help me and I certainly apologize if I upset anyone. You have to understand that I have an analytical mind, so while I completely understand that you are all trying to help and that you all have had experience with the disease, I was merely stating that I can understand the skepticism and why. I understand that you might be sensitive about this, but I thought maybe you could help me find ways to justify this course and respond to the skepticism objectively. I guess not.

Bottom line, this is not over yet. My Mom hasn't eliminated anything. We await word from her cousin who has UC sometime today. She has an appt with her gastro next Monday and an appt with a gastro from Mt. Sinai the week after. And contrary to what's been assumed here, I do appreciate your time and your posts. I think I've taken the time and effort myself to post "thank you" posts on my threads.

[nerdhume]

Larry,
I'm sure none of us intended to hurt your feelings. The fact is we each must find our own way of dealing with this, and it is a lot to deal with.

As with any other group of people and advice....take what you need/want and leave the rest.

We don't all follow the same plan, we have one thing in common....we want to be in remission while taking the least harmful medication possible.

Best wishes to you and your mom.

[Jeanemcl]

Larry,
I had several of the same feelings about the test and the expense. My family and friends got mad at me for being on the internet....I was a mess. I would say .....the support group says and everyone would roll their eyes. I did do the testing as I was desperate. I came back sensitive to gluten, soy and casein. I eliminated those from my diet and struggled with weight loss. I went on Endocort which had worked beautifully in three years ago. After 5 months of struggles things gradually got better. I stopped the Endocort, maintained a strict diet, went on 10 Elavil at bedtime and Questran during the day (both have side effects of constipation) - my internist's recommendation. Something worked....I am not sure that there was a magic bullet, but I continue with the diet and have cut back on the meds. I went back to the GI and she asked "did the diet cure you?" I said "not sure, but something has helped me manage this stupid disease! " and now that's what I do is MANAGE.....and BALANCE. I have dropped to every other day with Elavil, I have cut out Questran, but on days that I feels digestive distress I take it...I throw in an Imodium here and there if I am going out for dinner. I am extremely careful of what I eat in the morning as that is my "bad" time (sometimes). If I am going to walk which I do almost daily, I walk and then eat breakfast. I eat most meats, veg, rice, quinoa and eggs. I use Udi bread and earth balance butter. I read labels. All these things I have learned by observing, keeping a journal, and experimentation and reading suggestions from this site.
This disease confuses the best of us and we are all different and have to find out what works for us.
As somebody said before - take what you like and leave the rest. Hopefully, you will find out what works for your mom. Patience and persistence pays off with this disease. Good luck.