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climbmtwhitney

Sanity Check: Validity Of Enterolab

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Are you honestly and sincerely suggesting that people not bother getting tested for celiac? Excuse me - everyone on this board please excuse me - but I will continue to suggest you get tested for celiac disease if you present symptoms.

Actually I am.

Lymphoma is incredibly rare, and unlikely to ever be an issue.

Osteopenia, malabsorption, vitamin deficiencies will right themselves over time, once you've removed the cause. If you feel you have symptoms of these, or any other disease/disorder, you should get it checked, whether or not you have celiac disease.

My mom has had multiple bypasses, and other parts of her vascular system worked on. She's had two or three of her uncles die in their early to mid thirties from heart disease. Did I get genetic testing to determine my susceptibility? Nope. Did I demand a series of tests to find out whether or not I have damage? Nope. Did I realize that I'm probably at a higher than average risk for heart disease and live my life accordingly? Yep. Did I tell my doctor exactly this and ask her to pay attention for warning signs I might not be aware of? Yep.

No test needed.

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These discussions should be a catalyst for self research regardless of how knowledgeable some of us might sound.....An individual is responsible to see their own doctors, do their own research and listen to their own instincts.

Good advice Shay!

We can learn alot from the experiences of others....but we should also take responsibility for our own health and do the research before taking someone's word for anything.

I've had doctors in the past who were unwilling to order certain tests or who were dismissive of my concerns. I didnt waste time trying to convince them of anything. If they are not looking out for my best interest....then they arent the right doctor for me. Would I really want to keep seeing a doctor who is not willing to do whatever it takes to find out why I'm sick??

My advice to those who have doctors that are unwilling to test them for Celiac Disease is to get a new doctor! You have a right to be tested and you have a right to know whether or not you have the disease.

Dont give up your right to be tested. Enterolab shouldn't be substituted for tests which are specific for Celiac Disease.

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In my opinion, if Dr. Fine had such a revolutionary test that could stand up to peer review he would have published his results years ago.

Exactly!

I've stated my opinion on this numerous times...but I dont think that he will publish....because I dont think that the tests will stand up to peer review. I think he is aware of this...or he would have published by now.

That being said....I do hope that someday he proves me wrong and that there truelly is validity in this method of testing.

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Has anybody ever taken the Enterolab tests and NOT gotten results that were positive for gluten sensitivity or intolerance?

I have seen people post with negative Enterolab results.

I have not EVER seen anyone post that they were negative for genes with Enterolab. You either have Celiac genes, "gluten sensitivity" genes (not officially recognized) or one of each.

According to Enterolab the vast majority of the population is genetically susceptible to gluten sensitivity. Having "the genes" shouldnt come as a surprise to anyone who orders the genetic testing...its pretty much guaranteed that you will have them.

I used Enterolab (I had all of the Celiac testing done as well) and if I were starting over.....the only test I would order from them is the gene test. It was important for me to know whether or not I have a genetic predisposition for Celiac. I dont....and I found that info. to be helpful because I have no lingering doubts and am quite certain that I do not have the disease. All Celiac testing was negative.

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I have seen people post with negative Enterolab results.

I have not EVER seen anyone post that they were negative for genes with Enterolab. You either have Celiac genes, "gluten sensitivity" genes (not officially recognized) or one of each.

According to Enterolab the vast majority of the population is genetically susceptible to gluten sensitivity. Having "the genes" shouldnt come as a surprise to anyone who orders the genetic testing...its pretty much guaranteed that you will have them.

Thank you, Rachel, for clearing that up.

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Wow, what an exciting little posts.

well since I have been politely attacked for my one sentence. I have another one. I think that gluten intolerance is the same thing as celiac, because, funny we get all the same diseases that the celiac people get. hmmm maybe if we do not have DQ2 or DQ8 our osteoporosis, arthritis, diabetes & colon cancer is just from not exercising enough or something. :huh:

I will say that I was wheat light for over 10 years because OMG I was so stupid that I had not ever heard of gluten. While I was slowly dying I thought I just had a wheat allergy, I was also allergic to corn, potatoes, tomatoes, dairy, beef, pork, coffee, tea, sodas, peas, cod fish, mushrooms, black pepper, peaches, all citrus, barley, oats, & a few other things that I forget. I had that testing run 37 years ago, when I was 25.

I am 62 now & I make a nuisance of myself trying to educate the world about the dangers of gluten.

Anyone is welcome to interpret my posts, but to try to inject that I would on purpose try to kill myself by eating gluten light when I knew about gluten is wrong. I have been gluten-free for 4 1/2 years. ( I am also mostly grain free, and dairy free, & corn syrup free & soy free, & tapiocas flour free, & beef free.) A lot longer than most of you posters. There are those of us that have these problems & have been dismissed by the medical community & this forum because we do not have DQ2 or DQ8. we know that is wrong. But you know, another 50 years & it will be all sorted out, so I do not waste my energy getting all in a huff over it. Everything changes in time & if you cannot roll with the flow you will just be left in the dust with your old fashioned ideas.

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I think that gluten intolerance is the same thing as celiac, because, funny we get all the same diseases that the celiac people get. hmmm maybe if we do not have DQ2 or DQ8 our osteoporosis, arthritis, diabetes & colon cancer is just from not exercising enough or something. :huh:

Are there any studies that show that people who are gluten free (Celiac or not) do not EVER get these diseases?? I'm betting that people get these diseases sometimes...REGARDLESS. The gluten free diet doesnt guarantee that you wont ever develop colon cancer...or diabetes, etc.

Also, I have gluten intolerance....and I dont have these diseases (as far as I know) so when you say that we get all the same diseases I'm not sure that thats really accurate.

There are reasons that people develop these diseases which have nothing to do with gluten. Maybe if you dont have DQ2 or DQ8 or Celiac Disease....the diseases that you DO get are unrelated to Celiac or gluten intolerance?? Might that even be a possibility for some people? :unsure:

I have gluten intolerance and I do not consider it to be the same thing as Celiac...I consider it to be an entirely different condition.

Like I said in a previous post.....if gluten sensitivity is a "symptom" of some other underlying health problem (and it often is)...and if your body remains in an unhealthy state (because you are undiagnosed)....wouldnt this also predispose us to additional health problems, including autoimmune disease??

All of the diseases you mention can be a result of increased intestinal permeability (leaky gut).....and there are many causes for that (other than gluten). In fact....a gluten intolerance can be a SYMPTOM of leaky gut. In Celiac Disease it can be a CAUSE for the leaky gut......and yet in other conditions the gluten intolerance can be secondary to some other problem.

If you have infections which lead to increased intestinal permeability...which leads to undigested food entering the bloodstream....which leads to gluten intolerance....which leads to inflammation/pain/chronic symptoms.....how is this the same thing as Celiac Disease?? :huh:

They are two completely different things. One is a genetic autoimmune disease in which the immune system launches an attack on the intestines (causing damage to the villi)....and one is an intolerance brought on by some other issue (it could even be lack of enzymes necessary to break it down).

At any rate, any time that you have damage to the gut which results in undigested food proteins, bacteria, fungi, toxins, etc....entering the blodstream....then you will be more susceptible to health issues/diseases.

If I had seen ANY convincing evidence to support the idea that Celiac and all gluten sensitivity are the same thing...I would certainly be interested in looking furthur into that possibility. So far the majority of what I have learned leads me to believe they are seperate conditions. There actually IS plenty of evidence to support the idea that they are two seperate things.

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Their website says, "The immune reaction to gluten is gluten sensitivity. Testing for the presence of an antibody produced against gluten is the diagnostic hallmark of gluten sensitivity." To me this is very misleading. The immune system reaction in celiac is to attack one's own body - the small intestine. The reaction when one is gluten intolerant is to attack the gluten. That's a big difference.

When the body has an immune reaction in the intestines it is celiac disease, that's the true definition. But what is it called when the body has an immune reaction caused by gluten in another part of the body? Your definition of "gluten intolerant" is too simplistic.

If I had seen ANY convincing evidence to support the idea that Celiac and all gluten sensitivity are the same thing...I would certainly be interested in looking furthur into that possibility. So far the majority of what I have learned leads me to believe they are seperate conditions. There actually IS plenty of evidence to support the idea that they are two seperate things.

I don't have any convincing scientific evidence to show that gluten sensitivity and Celiac are the same thing. But I do have my body and my health history that have proven to me that my gluten sensitivity is just as serious as Celiac Disease. Through trial and error over the course of several years and several horrible health problems I discovered (with the help of ELISA testing at first) that I am seriously gluten sensitive, but not Celiac. I don't have the right genes for my intestinal lining to be damaged. What happens to me is that my kidneys are damaged instead. I have an autoimmune reaction outside the intestinal tract as do several other people on here. I won't risk eating a single crumb of gluten containing foods.

When I first started on this journey of food elimination I had the whole leaky gut thing. I spent a whole year eating nothing but fish, rice, a small amount of corn, sunflower seeds, some vegetables and most fruits. I also took tons of supplements to help heal my leaky gut. To make a long story short, 12-1/2 years later I can eat everything except soy, cow's milk and gluten. I don't have huge reactions anymore to soy or dairy, but I avoid them anyway. I react with gas, diahrrea, cramping, brain fog and anxiety with glutenings. I am VERY healthy now - no kidney problems, no arthritis (I was supposed to be in a wheelchair for the rest of my life), psoriasis is better, thyroid is better, stopped having cavities 12 years ago. But I still can't eat gluten.

No matter what anyone on here says, I KNOW that eating a gluten free diet has saved my health, if not my life. Even though I am only gluten intolerant I take it extremely seriously. I do get frustrated when posters here claim that gluten sensitivity is less serious that Celiac. Trust me, kidney disease (and yes, I've been officially diagnosed by a nephrologist by kidney biopsy and officially been told I'm in remission) is NOT less serious than intestinal damage. I don't know why people here have to argue about it and try to convince others that Celiac is a serious problem and gluten sensitivity is not. Why do people care who's condition is "worse"?

Sorry, I know this is off the original topic - I did post a short answer to the original question, but the last couple of pages of this has just started to bug me.

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I don't know why people here have to argue about it and try to convince others that Celiac is a serious problem and gluten sensitivity is not. Why do people care who's condition is "worse"?

It's psychology. People want to feel special and unique and they do not want someone who is not in their club to think they can be. It is the same as when my Dad killed himself and people say, "I know how you feel." Inside you are screaming...."NO YOU DONT KNOW HOW I FEEL!!!!" How could this person possibly know how I feel because they didnt go through the same thing as I went through. Even if this person saying "I know how you feel" has had a parent die, in my mind, it isnt the same. Even if their parent died of some horrible painful disease and they had to watch them suffer for years. In my mind, it isnt the same as having your Dad pull out a gun and blow his head off. It is different in my mind.

So it is with Celiacs. They have an official dx and they are not going to hear any part of someone who is self dx or gluten intolerant through Enterolab. It just isnt going to happen. Just like I will never believe someone whose parent didnt kill himself understands how I feel. They dont.

The quarreling will continue until the people who come in here "fighting" put down their gloves.

***I edited this post to be more relevant to this thread.***

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This board is a place for open discussion about anything and everything related to gluten. This thread is relevant and not a waste of time.

I'll refer everyone back to Board Rule #1 again.

"Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel."

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So it is with Celiacs. They have an official dx and they are not going to hear any part of someone who is self dx or gluten intolerant through Enterolab. It just isnt going to happen.

Shay, I have to disagree with you on this one. That statement is far too generalized and unfair to many of us here.

I have an "official" dx, and myself along with MANY others who have the official dx are very supportive of people who are self-diagnosed or are simply searching for answers. Many of us have been on both sides of the fence. Initially, I was self-diagnosed and had a hard time finding a listening doctor's ear. But the folks on this forum played an integral part in my quest for some answers. I never felt judged because I didn't have an official dx. I didn't give up, and now I have a doctor behind me, with an official dx, and no one treats me any differently.

That is my story, there are others who have similar ones, or some who are still struggling to find their answer.

You yourself used Enterolabs to see if you were gluten intolerant, and if memory serves me correctly, you are not "officially" diagnosed Celiac. BUT you remain a valuable member on this board. No one has judged you because you're not part of the official Club... whether you're Celiac or NCGS, the struggles are the same in trying to uphold the diet and regain your health.

Back to the original topic: I see ANY test this way: If you are willing to invest the money to have these tests done through Enterolab, then you go into it already feeling a sense of confidence. You know the controversy surrounding Enterolab, and having weighed the pros and cons, you make your decision. It is YOUR decision, no one here has the right to judge you for making what you feel is best for you.

I have wondered the same thing about Enterolab. Does everyone test positive? I've seen people say "no, I didn't." Then I also had a thought... The people who even take this test are going into thinking they have a problem with gluten, have proven it to themselves through an elimination diet or other means and are looking for some sort proof on paper. It should stand to reason that many of the people Enterolab tests WOULD be positive because most of these people are gluten intolerant... but as has already been pointed out, the cause is not always known. And there is the fault with Enterolab: if you have an underlying issue that is CAUSING you to be GI, it may take even longer to figure out why you are TRULY sick. For those that's it's helped to resolve their issues, it's a great thing.

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So it is with Celiacs. They have an official dx and they are not going to hear any part of someone who is self dx or gluten intolerant through Enterolab.

I'm sorry, but I take deep offense to this statement. Many of us have spent years now helping people with the gluten-free diet and lifestyle without judging.

To me, we're all in the same boat with regards to the everyday challenges of living gluten-free. As regards discussions of the differences between Celiac and Gluten Intolerance--they are just that. Different doesn't mean better or worse--just different.

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It is so easy in this type of forum to be offended. The truth is that typing is the WORST form of communication there is. You cannot see facial expressions, a persons eyes or hear inflection and tone of voice. I should have said "some" Celiacs. :blink:

Lack of careful proofreading can really get you hammered. I have never seen any misunderstandings at my local Celiac group meetings which includes official dx Celiacs, self dx Celiacs/gluten intolerants, etc. It just doesnt happen. People are nice and you can see it in their body language, their eyes and hear it in their voice. Mistakes are made, but easily corrected and no one gets upset.

Now I will back out of this thread because it appears to be causing a lot of stress and discomfort for many who have joined in. It will take everything in me to NOT click on it anymore. :o

But it is not nourishing me and I dont feel it is AT ALL helpful to he original poster.

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My husband tested negative through enterolab. The rest of us barely positive. We all have the known celiac genes and had been gluten light for over a month. I declined a blood test due to that fact.

In hindsight I wish I had just used Enterolab for the gene test and saved some money.

The thing is, those who don't have the known celiac genes and don't have symptoms clear up completely on the gluten free diet, may have other things going on and not check into them because they believe it's just gluten that has caused the damage.

You see so many sigs that have people who's diet is so restrictive. Those that don't have known celiac genes, have been gltuen free for at least a year (or two) and are still having to continue restricting their diets, in all likelihood are dealing with something else. Whereas it's good to be gluten free until that something is figured out and dealt with, those who are gluten intolerant due to other circumstances MAY be able to eat gluten down the road again.....it's their choice on whether they would want to try that.

I believe those who have the known celiac genes would be in the wrong to go back to gluten again but it seems that there are some who still believe they can eat gluten because they've been healed.

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Before I stop reading this thread I would like to add that the majority of people here are very supportive and don't bother with distinguishing Celiac from gluten sensitivity. Patti - you have always been so helpful and gracious to everyone in all your posts. I do feel welcome here and I get a lot of good information and support.

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I haven't read quite all of the replies here. It seems, as so often with people, to mostly be about trying to convince others their opinion is the right one...

Anyways... My story; I have been tested twice with blood work. 10 years apart. Both were negative. I was so sick with tons of symptoms, couldn't get out of bed, constant nausea, so tired it was hard to walk out to the post box, constant heartburn with sores in my throat even on meds, diarrhea several times a day, brain fog, memory loss.... I can't even remember all of them now. I thought I was gone for. 9 doctors and no one helped me. So I heard of Enterolab, got the testing done and was told I couldn't eat gluten, casein and soy. One pair of celiac genes and one gluten-intolerance gene.

Today, 2 years later, my life has completely changed. I have lots of energy, I feel I got my life back. I am very grateful. My stomach is sensitive and lets say I never have problems with constipation and off and on have heartburn, but nothing like it was. Nothing.

My grandmother died because of her stomach problems. I recognize some of her symptoms in myself. My aunt has problems..so does my mom off and on.

In a way I do not care if I actually have Celiac disease or "just" gluten-intolerance (but with the very strong symptoms I have and how little it takes I am guessing Celiac).

Many times I wish I would have gotten the "golden-standard" results/dx, but the blood testing said no. The doctors didn't want to try a biopsy after that.

I want to believe Dr Fine is right. I have noticed that when I follow his guidelines is when I do the best. When I step away I do worse.

It is hard when people say you need the blood work and the biopsy to get the dx, that Enterolab isn't up to par. Especially when I have noticed the big change, felt life returning. I sorta feel others have no right to tell me this. Better to just make your own decision about your own situation.

Then again, I wish that Dr Fine would actually publish his work. It was said that it was supposed to be done 2006 or something..still nothing as far as I know. This makes me wonder..and wishing I had pushed for a biopsy. Just for the peace of mind.

I almost think it is like with faith. Some need the actual proof and some just believe anyways.. Some days I wish I had the proof, others I just believe and trust the big change in my health.

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Wow! What a lively discussion - and so many who seem so offended. Not sure why simple words seem to make some so defensive.

Anywho ...

"I don't know why people here have to argue about it and try to convince others that Celiac is a serious problem and gluten sensitivity is not."

I would like one person - say the sainted one, shay - to quote any post of mine that remotely tries to say that gluten intolerance is not a serious problem. Heck, shay - or anyone - please quote one single post here by me (or anyone else) that says celiac is worse than gluten intolerance.

I'll wait here ...

No luck, eh? That's because y'all are reading quite a bit onto what I have been saying. I'm not trying to diminish your symptoms. My intent all along was to recommend testing for celiac if possible. If you think that doing that somehow equates to telling you that your problem is not serious - well - I don't know what to say. I could theorize about projection. I could get snippy. I just want you to get tested if you can. There's one fellow here who is recommending you not get tested. Apparently for anything. If you think that's good advice follow it.

And if there are a few of us here posting regards celiac what's the problem? If you're entitled to your opinion aren't we entitled to ours? If you recommend testing with Entero don't we get to voice our opinion? It's rather strange to accuse one side only of having an opinion and of trying to convince you of something when it's quite obvious that both sides are doing the same.

I don't want to be on a 'side' - I want you all to be healthy.

If I had not gotten tested for celiac I would be killing myself right now. The advice of some here would be downright deadly to me.

Think about that and try not to get so upset with someone who disagrees with you. I disagree with half these posts but the only person who upset me was the one who told me my health issues were not too serious. I had the right to get offended with that but nothing - nothing that I have written should upset anyone here. I live in America where the right to free speech isn't inhibited by your super-sensitivity. I haven't tried to offend and won't. Please don't censor those of us who want to write, offer good advice, and discuss passionately.

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I won't quote any particular post, but emotions seem to be heating up and antagonism is making an appearance from time to time. Consider what you are saying to other members, and keep in mind:

Rule #1. Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.
Disagree with a person's opinion, challenge their alleged facts, but do *not* attack the person, either directly or by innuendo.

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ENF,

I wrote this already, but you may have not read my earlier post, My daughter tested negative through enterolab. She also has no celiac genes at all.

to everyone who responded earlier, I absolutely do not get offended easily and I was not upset. My belly sort of hurt due to the strong emotions and disagreements gone weird. I want us to all get along:)

sorry if I sounded really offended, I was not.

sbj,

just so you know, I absolutely agree with you about celiac blood testing. I would recommend it completely before going gluten free. But I have my issues and my past and did what I thought was best at the time. I am RARE where I live. In my rural area I can easily name off 20 people who are gluten free. My little town does not even have a redlight. I know there are even more of us here than those 20. ONLY one of them has had blood tests. He is a close friend and my next door neighbor. He was sooooo ill and the drs had no idea what was going on untill they did his endoscope and saw damage. He has Celiac for sure. Everyone else just stopped eating gluten and only three of us have used enterolab. So I progressive in testing here compared to them.

jestgar, Why get testing at all? For me I wanted to know my genes to try to determine how careful I needed to be about cross contimination. I live with 4 gluten eaters!!!! I live where almost no one gets testing, so I understand completely your feelings on this.

Over the years I have had bloodwork. It was always perfect. I was screened for everything(except celiac , the irony of it all). My doctor said at the time that I would live forever, but just feel like poop(his words). I was horribly sick at the time, but began to feel better because I gave up wheat. I was horrified at the idea of giving up more when dr explained gluten to me.

take care everyone

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I'll add what other moderators have. You can challenge someone's facts, ask them to back them up, show research, disagree with their opinions. But, attacking a poster is not OK. This is an important topic and there's no reason why a civil discussion can't ensue.

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I've been reading this topic with a lot of interest, and decided to dive in with my 2 cents... I think this is an important topic to discuss.

First of all, I think if someone suspects that they might have celiac, they should get the appropriate celiac blood panel done rather than try and self diagnose. I also support having the biopsy done. There are a lot of good reasons for doing this - one of which is so that your doctor's have a baseline reading of what your stomach damage was should you need a second biopsy down the road.

Celiac disease is an autoimmune disease, as we all know, and can really damage your entire system. If your doctor has diagnosed you, he/she can then order a bone scan, blood work, barium test - whatever is needed. My doctor really wanted me to go ahead with the biopsy despite a 5 month waiting list and very positive blood work because he was concerned about cancer. In addition, they will only make sure your family (especially your children) are tested regularly if you have the diagnosis. I had a really illogical conversation with my GI pre-biopsy that went something like this:

GI: Well, your bloodwork is so strongly positive, you have celiac for sure.

Me : So why do we need to biopsy?

GI: To make sure you have celiac.

Me: Well, what else could cause my bloodwork

GI: Oh, don't worry you have celiac, we will find it on the biopsy.

Me: But let's say you don't - then will you say I don't have celiac despite the blood tests?

GI: Yes, and then you won't have to worry about having your children tested.

??????!!!!!

Anyway, to get back to the original poster's question - are the Enterolab tests valid? I believe that they are. I believe that they serve a very important purpose. They are people out there that really feel that they are reacting to gluten, but the celiac tests all come back negative. This makes sense, as the celiac tests do not test for gluten intolerance. But without any hard evidence to back them up, they may just feel like they are imagining the gluten connection, their families may not support them, they may be tempted to go back on gluten "just to see".

I strongly believe that having a test result that tells you that, yes, you should avoid gluten helps you stick to the diet. How could it not? Gluten is so prevalent in our society's food - it takes a lot of work to avoid it. It helps you psychologically to know that your body needs you to avoid it. Even though my blood work was very positive for celiac, I still had doubts in the back of my mind - maybe it was a false positive, maybe they mixed up my blood work! I was surprised that my positive biopsy totally eliminated those doubts. I think that Enterolab can do the same thing for the gluten intolerant person.

I truly believe that most people shouldn't eat grains, by the way... It's not the diet we're meant to eat. I loved reading Melissa Diane Smith's book Against the Grain... She quotes Dr. Fine throughout the book, by the way.

That being said, if you think you might be celiac, please go to your doctor and have all the tests done before going gluten free. If your tests are negative, but you still think gluten is your issue, then by all means go and get tested by Enterolab. I think it would help a lot to have some kind of diagnosis.

Anyway, that's just my opinion. Feel free to agree or diasgree. :D After all, we're all in this together.

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

My question is: Because I have this malabsorption, does this equate to having villi damage (which might mean Celiac)?

Enterolab was my only test. I have been on the diet for 3 months and feel GREAT, so I know I at least have gluten intolerance.

At this point I don't think blood tests would help, unless I went on a challenge diet (NO WAY).

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

My question is: Because I have this malabsorption, does this equate to having villi damage (which might mean Celiac)?

You absorb nutrients using your intestinal villi. Malabsorption in implies villi damage, as related to celiac. And yes, you would have to do a gluten challenge to get the celiac panel. I hope this helps.

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