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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Gentleheart

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I agree,Momma Goose....Very interesting. I wonder how many new forum members are added here alone per year? I found a link to another celiac forum, and looks like they have the same arguments about Enterolab,going back to July 2006..wondering if he would publish and verify his research results? BTW the link to that forum was accessible from the same link you provided at Manta.com.

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Rachel, I am a little confused, because in your sig lines, you have "Diagnosed by Enterolab." You have been one of the most vehement against Dr. Fine, so this is a bit confusing. You have also made many claims for several other conditions, such as metal toxicities, etc. many of which have no medical backing at all. So why the particular vehemence against Enterolab? I am not trying to be mean here but these appear contradictory to your stance.

If it had not been for Enterolab, I would not be gluten-free today because I had no serious intestinal symptoms. My symptoms were neurological and had I gone to a regular doctor, I would have been told to take migraine medications and that's it. I knew there was more going on, especially when I ate gluten foods, but I'm sure I would have been laughed out of every doctor's office. No gluten and little casein means no migraines for me. Many of you with actual celiac disease can't get doctors to recognize you. What about those of us who have DQ1 and 2.2 genes? Most doctors just don't get it - conventional medicine is far behind. Yes, it will be wonderful when/if Dr. Fine publishes, but I am happy that his service just exists.

Laurie

Laurie,

Your points are well taken about the lack of diagnoses being made in the USA. I think the GI's have boxed themselves into being scope machines....too much technology and too little thinking time, and they feel the tissue transglutaminase is the end all be all in serology. They must be using a broader range of signs and symptoms to diagnose in Europe than here. If I had been screened with that alone, I would still be undiagnosed perhaps, although mine had kicked in to warp speed by April of 2003. I have very low IgA and do not show evidence of serologic conversion. My rambling point is you are correct. It is pitiful how little is known by the average physician re: celiac disease in this country, but it doesn't equate into accepting an enterolab test as gospel. I just don't know what the right answer is for the undiagnosed, and I surely wish Dr Fine would explain how many times he has attempted to publish in the last 3 years???

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They must be using a broader range of signs and symptoms to diagnose in Europe than here.

mamabear, I read an article recently that suggests that the diagnostic envelope, that US doctors use for Celiac Disease, is far too narrow, compared to their European counterparts.

(wishing I could put my hands on that article)

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It is pitiful how little is known by the average physician re: celiac disease in this country, but it doesn't equate into accepting an enterolab test as gospel.

The truth be known, the most educated celiac doctors in the US are from other countries. As a rule, our US doctors were taught that celiac is very rare, and they may never have a celiac patient. It's a wonder any of us are diagnosed!!

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$400.00 is not an investment for a lot of people, it is pocket change.

I bet that most people spend more than that for a birthday party.

I've got to find these folks and invite them to my next birthday celebration!

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Gosh--what an argument about Dr. Fine. I neither denounce him nor defend him, but I must confess I am getting a little skeptical about him. I have two adult daughters, both biopsy diagnosed as celiacs (2000 and 2003). Neither my wife nor I, nor our parents, have or had any celaic-related symptoms. In my zeal to learn more about this affliction, since 2003 I have read everything I can find on the subject, I attended the NIH symposium on the topic, I have studied Dr. Green's book, I have attended lectures by Dr. Fassano, I read web sites such as this, I subscribe to newsletters and magazines on the subject, I have heard Dr. Fine speak, and have met him and asked him questions. Needless to say, I am infomed on the subject of celiac disease.

Mu own bloodwork was negative for celiac disease, and to repeat, I have NEVER had any symptoms common to celiacs. Nevertheles, out of curiosity because of my daughters, in August 2003 I took the COMPLETE GLUTEN SENSITIVITY STOOL & GENE PANEL offered by Enterolab. I exceeded, by far, the normal ranges for all five tests in the panel, and my serologic equivalent was HLA-DQ 2,2. I was informed by Dr. Fine that I had (a) dietary gluten sensitivity, (B) an autoimmune reaction to ttg, © increased fat in the stool likely to cause small intestine malabsorbtion, (d) sensitivity to milk protein and casein, (e) two copies of the main gene that predisposes to gluten sensitivity, which meant that I had an even stonger predisposition to gluten sensitivity than having a single gene. He recommended a strict gluten-free diet and retesting in one year to insure that "reaction is lessening."

I immediately started a strict gluten-free diet---remember now, I am well infomed on the subject, I know what I am doing, I have two adult diagnosed daughters to advise me, I am good at reading labels, and I am a very conscientious person. During the ensuing 14 months I noticed absolutely no manifestations of any kind, and no difference in any health-related matters----NOTHING CHANGED. After 14 months on a gluten-free diet, I was retested by Enterolab.

With the exception of a slight reduction (but still well above normal) in malabsorbtion , all test results were even HIGHER above normal than the earlier tests! I again received the Enterolab boilerplate message to go on a gluten-free diet and be retested in one year. I wrote to Dr. Fine and asked him what I had accomplished in the past 14 months. I stressed that I had not "lessened my reaction" as he implied should occur. I told him that I was knowledgeable of "hidden gluten," cross contamination, and the dangers of processed or restaurant food, and stated strongly that I was diligent in maintaining a gluten-free diet. I asked him if I would get the same boilerplate message if I was retested in another year, regardless of the test results at that time.

To his credit, Dr. Fine replied. He stated that "I suspect that you have gluten in your diet perpetuating malabsorbtion," and that "Symptoms are not what you need to follow, it is the objective facts." In short, Dr. Fine did not believe me and was not impressed by my case----apparently it did not fit his perception of the "facts." Well, in January 2005 I went off the gluten-free diet and now eat anything I want. I have experienced no physical or psychological changes since eating gluten, as I experienced no physical or psychological changes while on a gluten-free diet. One last quote from Dr. Fine's reply---"If you already have any symptoms associated with gluten or other food sensitivities, and especially if you have intestinal malabsorbtion, damage to the body is already occurring and a strict gluten-free diet is imperative. If you do not have malabsorbtion or such symptoms, consider yourself fortunate and strictly follow a gluten-free diet to prevent them."

I think that last quote is rather telling. He seems to say that if I have symptoms from eating gluten, than I must follow a gluten-free diet, but if I don't have them, then I should not eat gluten to avoid getting them! An unusal statement by a Doctor, to be sure.

In summary, I think Dr. Fine is a knowledgeable and brilliant man. He is personable, likeable, a convincing speaker, and he has no doubt helped many people improve their lives. On the other hand, he seems to be borderline eccentric, very opinionated and unchangeable, obsessive, and with a very strong one-track mind that will not deviate. I too hope he will "publish" his research some day, as I look forward to reading it.

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SBJ :D I live in a lower income neighborhood. The birthday parties around here are over the top, & that is for the kids. There will be a band, then a DJ when the band goes home, tons of food, balloon arches, rented play equipment for the kids, party bags, clowns & enough people & cars to cause congestion the whole length of the street, cake & other desserts - bought at the bakery. Alcohol drinks for the adults. Then there will be the illegal fireworks about midnight. The parties last until at least 2:00a.m. The neighbors behind me do the same thing, so I have to put up with quite a few of these a year. My rough estimate of these parties is that they spend about $800.00 on each one, at least. They have all the matching plates & accesories, & put themed tablecloths on at least 3 folding tables that they set up outside. I can tell when a party is in the works, they start the outdoor prep about 2 days in advance. Because our poor little neighborhood does not have a house 1 that will hold a crowd of people.

That is not to mention the illegal fireworks every New Years, & 4th of July at least. These people will spend a minimum of $300.00 on fireworks, I do not get it myself. But I see how people spend their money.

I choose not to afford cable, but I think that I am the only one on the street that does not have cable. These are all blue collar workers & they drive huge fancy pick up trucks, have cable TV, internet, & cell phones....

lets see if I can get back to topic... well it is nice to read all the posts but really I was thinking today, why do people really care about Enterolab so much? & how do some people have so much time to post on here. Do they have a life? I wonder if 10 years from now, that they will think that it is so important to cruise all the posts on here & warn people against some imagined mis-treatment from Enterolab. But I bet that Enterolab loves the controversy, it keeps their name out there. Like the people in the public eye, they know, there really is no such thing as bad publicity.

I also know some people that post on here incognito that are in the celiac community & think that they know everything. These particular people have an over inflated self righteousness just because they have been around a long time that they know everything & what they say is the only way. They have no idea that they are not so well thought of in real life...

I did not read the link about Enterolab that mentioned 4 employees & $170,000.00. So I was not clear if that was the salary of each of the 4 employees or if they were talking about the P&L for Enterolab. But I doubt that their net income was $170,000.00, because in the business world $170,000.00 is not much. I think that Enterolab is doing a much larger business than that. I was counting up this afternoon & I think that I alone, have referred over 30 people to them. Now I am referring all my mtDNA matches to them also. & one of my friends that tested there, gave the results to her doctor & now he tests all his patients thru enterolab. So it is not from this board that they are getting referrals, it is from each person testing thru them & then getting friends & family tested there also. Because it is so easy to do with the added benefit that it does not go on your medical records. It really does not matter what anyone on here says about Enterolab & they know that.

My neighbor that I just got to go gluten free along with her 2 year old, is doing very well & healing every day - she is never going back to gluten, nor does she have the money to test thru Enterolab. Her medical copay is $45.00 per visit for her and then another $45.00 for the baby, they have no extra money, they have been sick for two years, with ER visits & numerous doctor visits. Just being gluten-free for a month now & they have had no doctor visits. they also do not have the money to be tested by their doctor. So she will not have to read the controversy about Enterolab becasue that is not an option for her.

I would also like to point out that most people that are gluten-free do not post to any boards. I know a lot of people that do not post to the internet, which I think is amazing. My neighbors behind me have been gluten-free for 10 years, they are in their 80's & they are not on the internet either.

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http://www.intestinalhealth.org/

Mission of The Institute

--------------------------------------------------------------------------------

The mission of the Intestinal Health Institute is to improve intestinal and overall health and nutrition through medical research, public service, and education. We are working for your Health, Happiness, and Hope!

The intestinal Health Institute was conceived because of the public health implications of the scientific discoveries and teaching experience of Kenneth Fine, M.D., a professor, intestinal researcher, and publisher of scientific journal articles for over 20 years. Dr. Fine is determined to bring the benefits of his research and his passion for teaching to those who need it most: the people of the United States and the World. By utilizing the power of the internet and the public's free access to it, the long delay associated with dissemination of new information through the medical ranks to patients (usually 10-15 years) can be bypassed. People can benefit today!

You too can make your tax deductible contribution to Dr. Fine's Health Institute.

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I knew exactly what I was getting when I ordered my Enterolab test. If you spend a few minutes reading the FAQ and the other materials he provides he says exactly what it is and what it isn't. If anyone thinks he diagnoses celiac disease then they've been lazy or careless and haven't read up on what he offers.

Nancy, you learned about Enterolab because I posted about it on another board which you were on. Those posts are still there. I was always aware that Enterolab doesnt diagnose Celiac....and I made that clear when I posted it on that other board. I posted quite a bit of info. about gluten intolerance on that board....I was all in favor of Enterolab for testing....and I also believed with all my heart in what Dr. Fine was saying. I was only seeing one side....and that is what I was expressing in my posts at that time.

The impression that I got back then is that if you have high malabsorption, symptoms, GI issues, etc....and if you test positive with Enterolab...gluten IS your problem....Celiac or no Celiac. Dr. Fine states that in order to improve this and in order to heal and prevent furthur damage one MUST remove gluten.

That did not turn out to be the case for me....not even close. Basically I paid $350 for a food intolerance test. People made it seem as if it was much more than that...Dr. Fine makes it seem as if its much more than that.

Since it doesnt seem to ring true for everyone....and since he has not been forthcoming with any research....and since he's making statements that he doesnt follow through on....it doesnt appear (in my opinion) that his test is valid.

Since he's published several times in the past, and since he's TALKED about how he's in the process of publishing for YEARS now.....and since he's totally avoided giving any type of explanation as to why he hasnt followed through......its not hard to see why someone like me would be skeptical at this point.

If his test is valid and if he has all of this data collected....why wouldnt he publish it? He will help alot more people if he's got a test which is truelly better than anything else we've currently got. Why hold back? On the other hand.....if its not going to stand up to peer review....he will lose a large portion of his business.

I dont see any reason to recommend this test to people.....as I once did. It doesnt feel right to me. Of course nothing is set in stone and I'm open to changing my view.....but I doubt that my mind will be changed without seeing some convincing evidence that backs up all (or even some) of Dr. Fine's claims with regards to his tests.

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The truth be known, the most educated celiac doctors in the US are from other countries. As a rule, our US doctors were taught that celiac is very rare, and they may never have a celiac patient. It's a wonder any of us are diagnosed!!

Very true, Deb.....as recently as 10 years ago,even at THE Mayo in Rochester, it was thought it was 1 in 10,000. It's a real problem getting the US docs to understand that they are off 2 decimals!

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Rachel, I am a little confused, because in your sig lines, you have "Diagnosed by Enterolab." You have been one of the most vehement against Dr. Fine, so this is a bit confusing.

If you've been reading my posts its really not that confusing.

As I stated many times....I DID believe in Enterolab testing...I DID believe that I was being "diagnosed". His report sure made it sound that way....in fact I CRIED when I got the results back. You can go back to my early posts (2005) and its very clear how I felt at that time.

I simply havent edited my sig. since then. Sorry for the confusion.

You have also made many claims for several other conditions, such as metal toxicities, etc. many of which have no medical backing at all. So why the particular vehemence against Enterolab? I am not trying to be mean here but these appear contradictory to your stance.

I believe that my previous post pretty much sums it all up. Those are the reasons that I dont feel that Dr. Fine truelly has a test that would ever stand up to peer review.

As for the rest. Are you saying that mercury toxicity doesnt exist? That it doesnt have any medical backing? Are you saying that Lyme Disease doesnt exist? I'm pretty sure that there is plenty of scientific evidence which clearly indicates that such things DO exist. Whether or not some doctors choose to recognize them is another thing entirely.

I'm not one to jump to conclusions.....I like to have the clearest answers possible....especially when it comes to my health. Enterolab didnt give me a clear answer....in fact it threw me totally off track for a few months. It was a minor setback.....but only because I didnt take the advice to give my body a few years to recover on the gluten-free diet (since my malabsorption was so high). I remained on the diet and continued to investigate my health problems.

As far as the mercury. I was totally normal....no illnesses....very healthy all my life. No allergies, no food sensitivities, no problems with chemicals. Just a really active and happy girl. I had not a care in the world about health issues since I'd never experienced any for the first 30 years of my life. I went to the dentist....he drilled out a couple fillings. I havent been the same since that day. I lost my health COMPLETELY. I became sensitive to everything....almost like someone flipped a switch.

I think I'd be pretty ignorant if I were to ignore the possibility of mercury having something to do with this. Especially since mercury is known to cause all of the problems that I began to experience. I have seen countless doctors. The first 3 years were a complete waste. The last 3 years have been much better. I've seen several knowledgeable doctors.....none of them jumped to any conclusions. I've had ALOT of testing to rule things in and out....both conventional and alternative. I'm not easily satisfied.... so I take every test that might provide an answer....one way or another.

As far as the candida...every type of energetic testing that I had done identified it as a huge issue. Since it kept showing up I had bloodwork done. My antibodies for intestinal yeast were through the roof (one of the highest results my doctor had ever seen).

Could this be the reason for elevated tTG in Enterolab's stool test? I dont know....but there is some research which indicates that yeast (specifically candida albicans) is also targeted by tissue transglutaminase (tTG). That research can be found in the Celiac.com articles.

Anyways, I made some diet changes and the levels went way down (the biggest drop in a 6 month period that my doctor had ever seen :) ). Its no longer showing up as a major issue, I feel better and a fungal spot on my skin (which had been hanging around for more than two years) is now totally gone.

So what is contradictory to my stance? My bloodwork for yeast was very high...I did some things to address it and I had obvious improvement.....which was confirmed by improvement in my bloodwork as well as all other methods of testing.

I did not get these results when I followed Dr. Fine's recommendations for a strict gluten-free diet. He did not answer my questions (which I feel are valid questions), he has not published, he has not proven to ME that his test is anything more than a very expensive food intolerance test.

I am not attacking people who benefited from the test. I simply want people to understand that its not diagnositic of anything so that they fully understand what they're paying for....what is the problem with this?

You have been one of the most vehement supporters of Dr. Fine...and I am not questioning you as to why you feel this way. Why should it offend you if I post my own experience which is obviously much different from yours? It was my experience.....everything I've done over the past 3 1/2 years is right here on this board for the whole world to see. I have no reason to change my opinion about Enterolab....other than the FACT that the results (as well as Dr. Fine's recommendations) did not appear to have merit.

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tTG in the blood is considered by mainstream medicine to be a marker for celiac. It does seem logical that you wouldn't see high levels of it anywhere in a non-celiac person, including the stool.

tTG is not considered to be 100% specific to Celiac Disease....it is a marker for Celiac.....but it has also shown to be a marker for other autoimmune conditions. If it works this way in the blood.....why wouldnt it work this way in stool? Thats why I asked Enterolab this very question.

Also, I do not have Celiac genes, I do not have Celiac Disease...if tTG is specific for Celiac....then why would a non-celiac individual have it showing up in stool? Its not just me thats tested through Enterolab, with no Celiac genes and elevated tTG....its ALOT of people. If Dr. Fine has thoroughly researched this stuff.....why cant he answer these pretty basic and important questions with regards to his own testing method?

Are there studies showing that anything else DOES cause elevated tTG in the stool? (I'm not saying that there aren't such studies, just wondering if there are any.)

Not that I'm aware of.

although I would argue that, without the initial diagnosis of malabsorption, Rachel might not have ever gotten to wherever she is now health-wise.

I didnt purchase the test to find out if I had malabsorption. It was VERY apparant that I did long before I ordered the test. I lost 25 lbs. (and I'm small to begin with).....I ate tons and continued to lose. I had obvious fat in my stools. I had oil floating in the toilet water. I had loose stools and my meals were coming out undigested. I didnt need Enterolab to tell me that I had malabsorption and having it show up in their test has had nothing to do with any improvement I've made since then.

I've said many times that the only part of the test that I benefited from was the gene test. I wanted to know whether or not I carried Celiac genes...and I dont. I dont question these results. I had negative bloodwork and biopsy for Celiac.....negative genes pretty much sealed the deal for me as far as that goes.

But Rachel, what you say about being off the gluten-free diet for a year now, with no effect--that could be misleading, especially on this board!

Why would you suggest that I indicate in my signature that I'm off of the diet....and then in your very next post say this??

This is precisely the reason that I dont discuss this in my posts. I still recommend the diet to anyone who is having symptoms. I just dont charge them $400 for the advice. ;)

The reason I brought it up in THIS topic is because it pertains to my own personal experience with Enterolab. It pertains to my particular interest in Dr. Fine's "research". I think I have a vaild reason for wanting answers to my questions.

Apparantly, "whatever my problems are" came into question here......so I wanted to make myself clear. Hopefully people are no longer confused as to why I feel the way that I feel.....and hopefully we can all understand that I dont update my sig. on a regular basis. :)

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I'd love to know what evidence Dr. Fine has that his almighty stool test results are 100% precise for gluten as the sole cause of positive tTG. Especially considering that the bood tests aren't even 100% precise. Those are the kinds of claims that NEED to be either verified or refuted by peer review. But he has to publish first, and that'll never happen. How many times can Dr. Fine say he's "about to publish"? Every time he says that, he loses credibility. That's not good for business. I think it's time for him to put up or shut up, as the saying goes.

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With the exception of a slight reduction (but still well above normal) in malabsorbtion , all test results were even HIGHER above normal than the earlier tests! I again received the Enterolab boilerplate message to go on a gluten-free diet and be retested in one year.

Joe,

Interesting post!

I had posted a couple years back (when I started having doubts) that my plan was to get retested. I wanted to make sure that I'd been off of gluten long enough and I wanted to compare my results (which werent that high to begin with). There wasnt any chance that I was consuming gluten at all...and I figured that if anything was still elevated it could not be caused by gluten. If tTG or antigliadin came back even one point higher....I would not believe the test had any validity.

I honestly felt that my results would be worse or the same....but not better. I dont know why I felt that way...but I did. My plan was to get retested under another name (different address) and to fill out the form as if I were still consuming large amounts of gluten.

Unfortunately, this time last year I went off the diet without doing this "experiment" first. :(

You are the first person I've seen post who has retested.....so I'm glad that you shared your experience.

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You have also made many claims for several other conditions, such as metal toxicities, etc. many of which have no medical backing at all. So why the particular vehemence against Enterolab?

Laurie, I also meant to point out here that I never said that I dont believe in gluten intolerance as a condition. I believe that gluten intolerance exists (in abundance). Its not the "condition" that I'm questioning......its Dr. Fine and the validity of his stool test. I'm not sure what the conditions in my signature have to do with that??

There is not alot of research related to non-celiac gluten sensitivity...and doctors dont know much about it.....but we all know that it exists.

I believe that all of the conditions in my signature exist as well. However, I do NOT believe that all tests are equal....or valid. I dont speak highly of stool testing for diagnosing yeast issues....because I dont believe its a reliable test. There are lots of tests that are questionable....or unreliable....in my opinion Enterolab's stool test is one of them.

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well it is nice to read all the posts but really I was thinking today, why do people really care about Enterolab so much? & how do some people have so much time to post on here. Do they have a life? I wonder if 10 years from now, that they will think that it is so important to cruise all the posts on here & warn people against some imagined mis-treatment from Enterolab. But I bet that Enterolab loves the controversy, it keeps their name out there. Like the people in the public eye, they know, there really is no such thing as bad publicity.

Your own posts can be found in nearly every thread about Enterolab....so why wouldnt all of these same things apply to you?? Nobody is attacking the people who feel that Enterolab helped them.....why do some people get SO upset when anything negative is said about Dr. Fine or Enterolab?? :huh:

It doesnt upset me when people post in support of Enterolab. I just add in my own experience so that any readers dont only see one side. Whats wrong with that?

And yes.....I think that 10 years from now I'll feel exactly the same way about having shared my personal experiences in the hopes of helping others. It doesnt bother me if someone decides to pay for Enterolab.....what bothers me is seeing all of the posts AFTER that in which the individual is under the impression that they've been diagnosed.

As far as "bad publicity" goes. If the posts in this thread had been available to me a few years ago.....I would not have ordered the tests. I would have read BOTH sides and I would have had a much better understanding. Enterolab's website is one-sided....like any business....its all about selling the product.

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Dr. Scott Lewey references two studies in this article about tTg. Looks like there is definite evidence of finding tTg in intestinal and brain (yikes!) tissues. I would think this would give credence to Dr. Fine's lab tests. I really believe that gluten sensitivity studies are in their infancy. I guess I have quite a different view of gluten intolerance than some people, because I think gluten is a toxin to most people, since most of us do not have the mutation(s) necessary to process gluten correctly. I don't regard myself as having a disease, but instead I was being poisoned by gluten. And best of all, I don't need to take medicines or find a cure - I just need to remove the toxin from my diet.

Here's the link to the entire article:

http://Spammers Use This To Link To Spam.com/?Celiac-Disease-a...n&id=399309

Here is an excerpt:

Antibodies for tissue transglutaminase found in the intestines of blood test negative celiac disease patients are also found in the intestine and brain in people with brain disease due to gluten. Gluten ataxia is a brain disorder characterized by balance disturbances not explained by any other cause but due to the ingestion of gluten. The disorder responds to a gluten free diet if irreversible brain damage has not already occurred. Calcifications can be seen in the brain on magnetic resonance imaging (MRI).

Deposits of gluten related antibodies have been found in brain tissue obtained on biopsy and autopsy specimens. Mario Hadjivassiliou, M.D. from Sheffield England recommends gluten ataxia be added to a list of gluten related diseases that includes peripheral neuropathy and the skin disorder dermatitis herpetiformis. He has called for a new paradigm to be accepted where celiac disease is not considered primarily as an intestinal disease.

Dr. Hadjivassiliou and colleagues recently published a report of nine patients with gluten ataxia compared with seven patients with ataxia due to other causes. They found tissue transglutaminase IgA deposition on jejunum intestinal tissue on all nine patients with gluten ataxia but none of the control patients. Brain tissue from an autopsy of one patient with gluten ataxia was also found to have IgA tTG deposits in the cerebellum, pons and medulla of the brain but not in a control brain.

One last question to Rachel: If you are not gluten intolerant/sensitive and have been eating gluten foods for an entire year with no side effects, why do you subscribe to a gluten free forum?

Laurie

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Another very recent clinical trial (in Italy):

Usefulness of Gluten-Free Diet in Gluten-Genetically Predisposed Subjects Positive to Intestinal-Mucosa Anti-Transglutaminase Antibodies

Brief Summary

Undetected or untreated celiac disease may cause severe complications later in life, such as autoimmune disorders.

It is recommended for subjects with autoimmune diseases or at risk for celiac disease to be screened for celiac disease and to repeat serological screening about every three years to detect cases of clinically silent, late-onset celiac disease.

Celiac disease (celiac disease) auto-antibodies against tissue transglutaminase (anti-tTG) are produced in the intestinal mucosa even when not measurable in serum. By using the phage display libraries technique it is possible to investigate in vivo (intestinal biopsy) early antibody responses in autoimmune disease. In particularly, this technique demonstrated that the humoral response against tissue transglutaminase occurs at the intestinal mucosal level, and that the human VH5 gene is the commonly used variable region by the celiac patients to build the anti-tTG. The intestinal mucosa production of IgA anti-tTG could be important in the diagnostic work-up of early-stage celiac disease, when mucosal histology is not yet diagnostic.

Link: http://clinicaltrials.gov/ct2/show/record/NCT00677495

It will be interesting to see the published results of this one. I've done a very limited search for some studies relating using intestinal samples to identify positive gluten sensitivity. It looks like many other countries are way ahead of us - there are tons of studies out there. I couldn't find any that stated that there was no connection between these intestinal antibodies and gluten sensitivity (most concentrate on actual celiac disease however). This is truly gluten sensitivity science in its infancy. How exciting to watch it! And we may find that Dr. Fine was quite ahead of his time.

Laurie

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This one is from 2001! Again, Italy.

Antiendomysial antibody detection in fecal supernatants: in vivo proof that small bowel mucosa is the site of antiendomysial antibody production

Antonio Picarelli, M.D. * a , Luigi Sabbatella, B.Sc. a , Marco Di Tola, B.Sc. a , Teresa Di Cello, M.D. a , Stefania Vetrano, B.Sc. a , Maria Cristina Anania, B.Sc. a

a Department of Clinical Sciences, University of Rome "La Sapienza," Rome, Italy

* Reprint requests and correspondence: Antonio Picarelli, M.D., Department of Clinical Sciences, Universit

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Finally - one more! I've got to stop - I am a biology teacher and this stuff is addicting to the scientist in me! This one is really interesting. It shows that gliadin (the harmful part of gluten) is harmful to all epithelial cells! Wow, the implications of that are enormous!

ISSN 1007-9327 CN 14-1219/R World J Gastroenterol 2005 December 28;11(48):7597-7601

Cytoskeleton reorganization and ultrastructural damage induced by gliadin in a three-dimensional in vitro model

Ersilia Dolfini, Leda Roncoroni, Luca Elli, Chiara Fumagalli, Roberto Colombo, Simona Ramponi, Fabio Forlani, Maria Teresa Bardella

Received: 2005-03-01 Accepted: 2005-07-08

Abstract

AIM: To evaluate the interplay between gliadin and LoVo cells and the direct effect of gliadin on cytoskeletal patterns.

METHODS: We treated LoVo multicellular spheroids with digested bread wheat gliadin in order to investigate their morphology and ultrastructure (by means of light microscopy and scanning electron microscopy), and the effect of gliadin on actin (phalloidin fluorescence) and the tight-junction protein occludin and zonula occluden-1.

RESULTS: The treated spheroids had deep holes and surface blebs, whereas the controls were smoothly surfaced ovoids. The incubation of LoVo spheroids with gliadin decreased the number of intracellular actin filaments, impaired and disassembled the integrity of the tight-junction system.

CONCLUSION: Our data obtained from an "in vivo-like" polarized culture system confirm the direct noxious effect of gliadin on the cytoskeleton and tight junctions of epithelial cells. Unlike two-dimensional cell culture systems, the use of multicellular spheroids seems to provide a suitable model for studying cell-cell interactions.

I found a good website with links to many of these studies:

http://glutenfreeindy.com/diagnosis/index.htm

The surprising thing (well, not so surprising I guess) is that the Mayo clinic is still back on the old "losing weight, diarrhea, blood test/biopsy" thing with only DQ2 and DQ8 in consideration.

Laurie (I'll stop now, I promise) :P

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This one is from 2001! Again, Italy.

Antiendomysial antibody detection in fecal supernatants: in vivo proof that small bowel mucosa is the site of antiendomysial antibody production

Antonio Picarelli, M.D. * a , Luigi Sabbatella, B.Sc. a , Marco Di Tola, B.Sc. a , Teresa Di Cello, M.D. a , Stefania Vetrano, B.Sc. a , Maria Cristina Anania, B.Sc. a

a Department of Clinical Sciences, University of Rome "La Sapienza," Rome, Italy

* Reprint requests and correspondence: Antonio Picarelli, M.D., Department of Clinical Sciences, Universit

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Rachel - thank you for sharing your experience. You seem reasonable and I hope you are not getting frustrated. Your point was that elevated levels in the stool could also be due to something else besides celiac -- the posted studies do not refute that.

For those who don't improve on a gluten-free diet, obviously, the answer is to keep looking.

Misinformed folks are sometimes avoiding further tests while they try this diet out for a while. That's proven by numerous examples on this forum. If you have a tumor or ulcers then waiting for a year while you try a diet out could be dangerous.

Time and again I've read on this forum, "I'm not gonna get any further tests - Enterolab says I've got the genes and I'm sure it is celiac." If you don't have celiac and you've got something else then this could be a dangerous course of action. Conversely, if you do have celiac and you don't get bone density, CBC, and so on then this could be a dangerous course of action as well.

About the neighborhood where they willingly spend $800 on a birthday blow up bouncy house and fiesta until 2:00am: I think you might be talking about my neighborhood! However, I seriously doubt these folks would spend $400 to send their poop to Enterolab.

If you've got health insurance then please begin by asking your doctor for the full celiac blood panel. It's the right way to start. Don't be scared of an endoscopy, it can help to diagnose many other serious conditions. And if you can't get a diagnosis from your doctor please remember, you can't get a diagnosis from Enterolab either. You don't have to pay anyone to start a gluten-free diet.

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(darlindeb25 @ Nov 28 2008, 02:50 PM)

What's not to understand???? Dr. Fine's statement is speaking of gluten sensitivities, not whatever your problem is. There is ntohing wrong with his statement, it's a simple fact!

(Rachel)

When I read my results it sure seems to me that he's talking about MY issues.....and the report does have MY name on it.

Well Rachel, everything is not about you. My statement actually had nothing to do with your report from Dr. Fine. My reaction was to something else you were saying that was in defamation of Dr. Fine's character. Nothing was mentioned about your test results, you were questioning something on his webside.

Then perhaps your sig ought to reflect this? Anybody reading your sig would think that you are still gluten-free.

I agree with Fiddle-Faddle. It's no excuse for you to say you just haven't gotten around to changing your signature. Your signature is telling us something that is not true. If you do not eat gluten-free, then you should be telling us that too. This is the "Celiac Disease and Gluten-Free Forum". Don't get me wrong, I am not saying you shouldn't be here, you definitely have something to offer.

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Rachel - thank you for sharing your experience. You seem reasonable and I hope you are not getting frustrated. Your point was that elevated levels in the stool could also be due to something else besides celiac -- the posted studies do not refute that.

Yes, that was my point....and noone (including Enterolab) was able to tell me how Dr. Fine can be certain that elevated tTG in stool is directly related to gluten in every case.

Elevated tTG has been found in patients having no evidence or indication of celiac disease....but who do have other autoimmune conditions (such as Crohns). Why do some people continue to have elevated tTG even after following a strict gluten-free diet?

It was just posted that one person's Enterolab results went UP after following a strict gluten-free diet for a long period of time....and he has no symptoms assocciated with consuming gluten.

In addition it has been shown that candida (which is a natural inhabitant of the intestinal environment) and gliadin share an identical protein sequence....the same one that causes the autoimmune reaction to occur in Celiac Disease.

We know that cross reactivity can and does occur in various autoimmune disease.

Dr. Nieuwenhuizen, knowing the actual sequence of proteins which trigger celiac disease from the published work of other scientists, had searched the databases available to him through TNO to see if the same sequence existed in other places. It turns out the identical sequence of proteins occur in the cell walls of Candida albicans.

Due to the aminoacid sequence equality or high homology between α-gliadin and γ-gliadin and C albicans

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Well Rachel, everything is not about you. My statement actually had nothing to do with your report from Dr. Fine. My reaction was to something else you were saying that was in defamation of Dr. Fine's character. Nothing was mentioned about your test results, you were questioning something on his webside.

Ummmmm.....what part of my question was in defamation of Dr. Fines character? :huh:

Where are the studies that Dr. Fine has done which prove this statement to be true? Is he following up on the people who had high malabsorption scores to see if this improved while on the diet?

You responded with this....

What's not to understand???? Dr. Fine's statement is speaking of gluten sensitivities, not whatever your problem is.

Correct me if I'm wrong....but we are all here discussing Enterolab/Dr. Fine.....so I'm not talking about any other issues that I have. I'm talking about my experience with this lab. I'm talking about gluten sensitivity and my experience with it. Isnt that what Dr. Fine is ALL about...."diagnosisng" gluten sensitivity??

He sent me a report and in that report he was talking about MY problems. So when you say that he's not talking about my problems....what exactly did you mean by that?

You obviously support Dr. Fine/Enterolab and you have posted your experience and all of the reasons why you believe in him. I did not question you on any of this....thats your expereince. Why do you have such a problem with me posting about my experience?

I agree with Fiddle-Faddle. It's no excuse for you to say you just haven't gotten around to changing your signature. Your signature is telling us something that is not true. If you do not eat gluten-free, then you should be telling us that too. This is the "Celiac Disease and Gluten-Free Forum".

No excuse?? :huh: Wow.....I didnt know that I was obligated to update my signature. In fact....I dont think that I have to have ANY info in my signature at all. Its my choice to do what I want with my signature.

Fiddle Faddle also mentioned that it could be dangerous for me to disclose that I'm no longer on the diet. I happen to agree with her on that. I feel its MORE important for me to not post anything which could be potentially harmful to someone who might not be aware that I do not have Celiac Disease. Thats more important to me....so I'm sorry if you feel that you didnt have all of the info. with regards to my diet. You can always read the OMG thread ;) ....its not a 'secret' that I went off the diet. I've been open and honest with regards to all of my experiences.

Arent there people here who are posting that do not follow the diet themselves?? I will "correct" my signature if it makes you feel better. ;)

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