Enterolab And Doctors

[tiredandsick]

I know a million questions have been asked about enterolab tests, so I am sorry if this bothers anybody. But, does anybody know if there are any doctors out there that trust enterolab and believe that they are legitimate enough to give a diagnosis of celiac sprue? I know that enterolab cannot give you a diagnosis, but are there any doctors that could look at your results from enterolab and give an official diagnosis of celiac themselves? thanks for your time.

[Ursa Major]

I believe there are some people here who's doctors took the tests from Enterolab seriously. Hopefully one of them will see this post and chime in.

[Rachel--24]

Personally, I dont believe that Celiac should be diagnosed based on Enterolab results since it is not a diagnostic test for the disease. I think most doctors are of that same belief.....so even though there are some who might give a diagnosis...I think those doctors are few and far between.

Its not really a matter of trusting Enterolab...but the test itself is not for Celiac Disease...its for gluten sensitivity. Of course some people are reacting to gluten because they have Celiac....but at the same time....there are a larger percentage of people who react to gluten for reasons having nothing to do with Celiac....and Enterolab is not capable of differentiating between the two.

In my opinion, when it comes to diagnosing a disease....the testing should be specific for that disease. Enterolab is not specific for Celiac Disease....which is why its not an "accepted" method of testing.

[tiredandsick]

Rachel--24, thankyou for your thoughts on this, it helps to hear from others who have been through this longer.

So does that mean(as far as you know at least) that enterolab doesn't really have false positives in regard to gluten sensitivity? So if I have a positive enterolab test, then I could not eat gluten for life just like actual celiac? or can you out grow it?

If I have a positive test with enterolab, is there any chance at all that I could eat gluten without a big problem, or is a positive enterolab test still mean the same thing (in regards to treatment ONLY) as a positive biopsy? only without an actual Dx.

I guess I am just questioning my results, because my "conventional testing" was all normal.

[Rachel--24]

So does that mean(as far as you know at least) that enterolab doesn't really have false positives in regard to gluten sensitivity? So if I have a positive enterolab test, then I could not eat gluten for life just like actual celiac? or can you out grow it?

As far as false positives with Enterolab...I have no idea. Noone knows the answer to that question and Dr. Fine (who runs Enterolab) has never published anything for peer review.

Gluten intolerance is not something that you outgrow. However, for those of us who do not actually have Celiac....the diet does not necessarily have to be life-long. Its not like one day you'll wake up and no longer be intolerant to gluten.... only if the underlying cause of the intolerance is identified and treated can the problem be resolved.

This means that for people who are non-celiac....the gluten intolerance stems from some other issue. It could be something simple and easily corrected....or it can be very complicated and multifactorial. When leaky gut is an issue there are usually several factors involved.

If a person is intolerant to gluten because they have increased intestinal permeability (leaky gut) then it is necessary to remove gluten until that problem is resolved completely. If the leaky gut problem is never resolved....then yes...the diet can be life-long.

If I have a positive test with enterolab, is there any chance at all that I could eat gluten without a big problem, or is a positive enterolab test still mean the same thing (in regards to treatment ONLY) as a positive biopsy? only without an actual Dx.

Positive Enterolab results are not the same thing as a positive biopsy. A positive biopsy confirms Celiac....positive Enterolab results kind of leave you hanging....you still dont actually know what is going on.

There are an endless amount of possibilities for gluten intolerance that are unrelated to Celiac Disease. An example that is frequently brought up here is Lyme Disease. Any condition which weakens the immune system can eventually result in damage to the intestinal lining....not the villi damage which is seen in Celiac Disease....but increased intestinal permeability. This can be caused by overgrowths of bacteria and/or yeast in the gut....or metabolic imbalances/disturbances in the body.

Autism is another example where the underlying issues lead to gluten intolerance....and the removal of gluten improves symptoms significantly....but in order to resolve the problem many things need to be addressed. Even though the gluten free/casein free diet is an important "treatment" for Autism...most of these kids do not actually have Celiac Disease. They have Leaky Gut as well as enzyme deficiency.

I guess I am just questioning my results, because my "conventional testing" was all normal.

Were you consuming a normal amount of gluten during the months and days leading up to testing?

Were you tested for IgA deficiency (Total Serum IgA)?

Do you carry either of the main genes which predispose to Celiac Disease?

In my case all Celiac tests were negative....including gene testing. My only test to come back positive was Enterolab....but as we know....this can be positive for other reasons. The gluten free diet did not resolve my symtpoms entirely and I do have many other issues (which are currently being addressed).

I thoroughly investigated the possibility of Celiac Disease before ruling it out completely. The fact that I was not able to resolve all of my symptoms while on the diet confirmed (in my mind) that Celiac was not the reason behind my food intolerances and malabsorption issues.

[Ursa Major]

I agree and disagree with Rachel at the same time.

Unfortunately, there is no evidence that really, the only two genes that predispose to celiac disease are the ones currently tested, at least here in North America. In other countries they recognize more than those two genes as official celiac disease genes.

Some people on this board were diagnosed with celiac disease with positive blood work and positive biopsy who did NOT have those official genes.

Many scientists believe that celiac disease is just one manifestation of gluten intolerance. Gluten can attack the nervous system instead of the gut, for instance. In which case you will NEVER have positive test results. But many here have made amazing recoveries from being completely incapacitated to the point of being in a wheelchair by being on the gluten-free diet.

There are cases were the gluten intolerance is caused by other underlying issues. In Rachel's case it is Lyme disease, and there are others here where that holds true as well. Once their primary cause for leaky gut is addressed, they may be able to eat gluten again without a problem.

But I do believe that there is such a thing as being non-celiac gluten intolerant without any other underlying issues. If you get better on a gluten-free diet, then in my opinion that is the case, and the gluten-free diet is a life long thing.

Plus, the celiac disease testing is NOT very reliable and results in many false negatives. Again, if you get better on the diet (and you may have to eliminate dairy and soy for a while, too, as they prevent healing much of the time), then you probably have celiac disease, even with negative tests.

Gluten intolerance runs in my family, it looks like all of my six brothers and my sister are gluten intolerant, and so was my mother and her mother. All my five children appear to be gluten intolerant, and the same goes for all of my grandchildren. Most of us are dairy intolerant as well, and always have been.

But when sticking to a gluten-free diet, most of them are perfectly healthy. I had celiac disease symptoms all of my life, but only figured it out three years ago. I do have many other issues now which aren't getting better on the gluten-free diet (even though I am much better than I was), and I am being tested for them.

Still, I don't believe I will ever be able to eat gluten again.

[gfpaperdoll]

I am also gluten intolerant & I do not agree with Rachel & her views of Enterolab or her views on gluten intolerance. I know that I am healthy when I do not eat gluten & I have nothing else wrong with me. I was able to add in a lot of foods when I quit eating gluten. I am also dairy free & corn syrup free & soy free - by choice because I think it is unhealthy.

I have had the following symptoms go away once gluten free - mild depression - gone, anemia - gone - hypoglycemia - gone, leg cramps - gone, chronic bladder infections, 30 years - gone, headaches - gone, bowel problems - gone, ear infections - gone, catching every germy diesease that came along - no more, no placque on my teeth, & no more bad cavities, the dental hygenist cannot believe my tooth health since I have gone gluten-free, I mean she just stares at my teeth - I am also 61 & they expect them to be bad...

I also no longer have some other problem I used to have with my blood - I forget the name. & the surgeon that patched up my knee three years ago with two metal plates & 6 screws cannot believe that I do not have debilitating arthritis in that knee & he also cannot believe that I have NO pain & do not even take advil. They just look at me with their mouths open. I did not tell him that I clogged at my 20 year clogging reunion this year!!!

I have two younger sisters & a brother, they have diabetes, seizures, depression, sleep problems, bad teeth, high blood pressure, rhematoid arthritis, IBS, stomach issues, etc etc etc. They are not gluten-free, nor or they going to change their diet. They do take a lot of pills & see the doctor a lot.

I am mostly grain free - it is not for everyone but for me it is the right thing. I read a lot & I have done a lot of research & I have had a lot of my family tested thru Enterolab. & some doctors do test thru Enterolab for their patients. So do not think doctors are not using Enterolab - they are. If you will read the book "Good Calories Bad Calories" by Gary Taubes, you will see that these papers that the medical profession publishes are mostly worthless & totally political. I applaud Dr. Fine for not going that route, why should he give the government & pharmacetical industry ammmunition to use againt him. He is doing just fine with what he is doing now. & he is serving a great service for people like me that the main stream medical community is laughing at for eating gluten-free. I know a lot of highly educated people that have tested thru Enterolab. They are not so foolish to think that their doctor knows everything. In fact I just talked to a surgeon friend the other day, his wife is a nutritionist & their son has had food allergy problems & he was very interested in Enterolab & everything that I had to say about gluten intolerance & is going to get his son tested thru Enterolab. Of course they have the money to do whatever they want & enough sense to check out options that are available to them. I bet that he also recommends Enterolab to other doctors & family etc.

But I do appreciate Rachel's post because she will keep some people from eating gluten-free & geez, we cannot all eat gluten-free. what would happen to the grain industry in the U S? & we need some sick people to keep the pharmacetical companies in business - not to mention the surgeons. It would be a crisis if the baby boom generation quit eating gluten. The alzheimer epidemic would not happen & we would live longer & totally deplete the social security reserves.

[Rachel--24]

Some people on this board were diagnosed with celiac disease with positive blood work and positive biopsy who did NOT have those official genes.

Some people are diagnosed Celiac based on positive IgG antibodies only.....and these antibodies are not specific to Celiac Disease. In addition.....some people may have elevated tTG as a result of another autoimmune condition.

As it stands somewhere around 97% of biopsy proven Celiacs have DQ2 and DQ8. Its only a VERY small percentage of diagnosed Celiacs who do not carry either of these genes.

Many scientists believe that celiac disease is just one manifestation of gluten intolerance. Gluten can attack the nervous system instead of the gut, for instance. In which case you will NEVER have positive test results. But many here have made amazing recoveries from being completely incapacitated to the point of being in a wheelchair by being on the gluten-free diet.

It is not gluten which attacks the gut in Celiac Disease...its the immune system. When there are immune responses to gluten OUTSIDE of the gut....this is a result of leaky gut. Undigested gluten (or any undigested food protein) does not leave the gut UNLESS there is a situation of increased intestinal permeability.

So when the problem is occuring somewhere else....its not Celiac Disease.....hence the negative test results. Its the same situation with Autism....the opiates from gliadin and casein cause problems because they are passing through the gut. The problem is not caused by gluten itself...but by damage to the gut from many different factors.

Yes.....people in this sitaution can and DO have dramatic results from the diet. This is why it is such an important treatment for those with Autism...or any condition which has resulted in leaky gut. Gluten causes damage when it passes through the gut and enters the bloodstream....by not consuming gluten you can resolve many of those disabling symptoms....however, this does not necessarily address the underlying problem (damage to the gut).

There are cases were the gluten intolerance is caused by other underlying issues. In Rachel's case it is Lyme disease, and there are others here where that holds true as well. Once their primary cause for leaky gut is addressed, they may be able to eat gluten again without a problem.

Actually, my problem is not Lyme Disease. That has been known for quite some time now. I have been exposed to it....but it is not the reason for my gut issues....nor is it the reason for my food intolerances. I do not have an active Lyme infection at this time....it is not a significant factor in my health problems.

[Rachel--24]

But I do appreciate Rachel's post because she will keep some people from eating gluten-free & geez, we cannot all eat gluten-free. what would happen to the grain industry in the U S? & we need some sick people to keep the pharmacetical companies in business - not to mention the surgeons. It would be a crisis if the baby boom generation quit eating gluten. The alzheimer epidemic would not happen & we would live longer & totally deplete the social security reserves.

I dont think this is an appropriate response to my posts.

My purpose for posting is not to keep people from eating gluten free. That is a ridiculous statement and obviously you have not clearly understood the message in my posts. I'm sorry for that.

There is nothing to back up Enterolab's claims as far as the validity in this type of testing....at this time Dr. Fine has still not published anything. Enterolab itself states that they CANNOT diagnose Celiac Disease in their testing...it is not considered to be diagnostic for *any* disease condition....Celiac or otherwise. It is a food intolerance test.

All of this is true so I'm not sure what part you are not agreeing with??

During your time on this board you have stated many times that you must stick to a very basic diet.....so it seems to me (from reading your past posts) that you do have many food intolerances and even though many symtpoms have resolved while following a very restricted diet...you cannot say that you are 100% healthy just by removing gluten alone. I apologize if I'm incorrect but I *have* read several of your posts. I've been here for quite some time now and have become familiar with many of the members who post here.

Anyways, my purpose for posting is to provide those who are interested with as much detail as I can. We cannot jump to the conclusion that every person has Celiac....regardless of negative test results. We also cannot put all of our faith into one lab which clearly states that the results are not diagnositic.

I will applaud Dr. Fine when he actually follows through with his promise to publish his findings for peer review.

As of now I have seen a large percentage of people who have tested positive with Enterolab...and who did not recover while on the gluten free diet. Many of them have multiple food intolerances....which is indicative of Leaky Gut. Do you think that Dr. Fine can differentiate bewteen a patient who has gluten intolerance as a result of leaky gut and a patient who actually has Celiac Disease??

The answer is no...he cannot.

Do you think that he can identify the cause of malabsorption in his stool testing?? Is it a result of gluten intolerance or some other factor?

The answer is no....he cannot tell you WHY you have malabsorption...only that you do.

The same is true of his gluten intolerance testing. He cannot tell you WHY you have gluten intolerance...only that you do.

This is not a diagnostic test. Since he is *only* telling people that they need to avoid gluten for life....and not giving the explanation that they may have an infection or some other chronic condition which has led to a gluten intolerance....I dont think I can applaud his efforts. Many people will continue to suffer because they were misled by his claims.

He is failing to mention leaky gut (and its causes) as an important factor involved in the immune response to gluten...OUTSIDE of the gut.

Like I said....if he truelly wants to make a difference he will publish his findings so that doctors all across this country will be able to use this method of testing in diagnosing patients. Of course, the tests would have to show some validity in order for that to actually happen. I'm sure this has alot to do with why he still hasnt published.

He is doing just fine with what he is doing now.

I have to agree 100%.....and why should he risk all of that by publishing his findings??

I know a lot of highly educated people that have tested thru Enterolab. They are not so foolish to think that their doctor knows everything.

I dont know what a person's education has to do with it?? Basically when we are sick....we want answers....period. I consider myself to be somewhat intelligent and I also tested through Enterolab. I did this because I was under the impression that the tests were diagnostic...at least to some degree. I do not think that my doctors know everything....and I do not believe that Dr. Fine has all of the answers either.

One only has to research Autism (a condition which results in gluten intolerance)....to really see how gluten can have a severe impact on behavior, brain function and the central nervous system....and yet it is a consequence of things which have gone wrong in the body...and not an initial cause for the health problems.

I have seen several Dr.'s who are all very knowledgeable about gluten intolerance....and they do stress the importance of the diet. Not just the removal of gluten...but also dairy and sugar. However, they do not leave it at that.....they run an assortment of tests to determine what things might have led to the symptoms of chronic illness and food intolerance. The tests are the same ones that they run to identify the underlying issues in the autistic population.

I dont know why you would assume that my goal is to keep gluten in the diet and to keep the pharmaceutical comapanies up and running. I am very anti-pharmaceutical. I'm all about getting to the root of the problem.

If it were true that gluten intolerance was indeed the underlying cause for all people here....then I guess everyone here would easily restore their health on this diet.

Since that is not the case....I think people have a right to have access to enough information so that they can make the best decisions regarding their health. Personally, I dont think its best to tell everyone that gluten is their problem....its not realistic and its not going to resolve everyone's health issues.

There are those who do fully recover on the diet, there are those who notice some improvement, there are those who notice no change in symptoms....and there are also those who get worse.

When I first joined this board I would have appreciated knowing all of the facts....so that I could have made more informed decisions. Most people told me that I *did* most likely have Celiac Disease...even though my tests were neggtive. The fact is that I do NOT have Celiac Disease.

Also, Alzhiemers would still occur.....even if the whole world went gluten free. Autism would still occur, diabetes would still occur, autoimmune thyroid disease would still occur, etc., etc.

[tiredandsick]

thanks to all of you that have replied(and debated). I do understand the reasons for the emotional connection to the debate, I think we are all probably a little personally attached to what has improved our own health situations. I have learned alot about this just reading your replies.

Can somebody elaborate on leaky gut for me? or point me to a research source on line where I could find out more about it? like specifically, what are some of the possible causes of leaky gut?

From what I gather, some causes of leaky gut are fixable and others are life long, but what are some of the more common causes that usually involve gluten as a problem food?

P.S. I do have the DQ*8 gene

I was tested for IgA total serum and it was normal(like 200 maybe?)

I was eating about an average of a couple pieces of bread a day.

[Ursa Major]

If you have the DQ8 gene, have the symptoms and get better on a gluten-free diet, than the likelihood that it is celiac disease is fairly high.

Actually, leaky gut can have many causes. One of them is CELIAC DISEASE. So, yes, it is possible to develop a gluten intolerance because of leaky gut, but one of the causes of leaky gut is also celiac disease.

Other things that can cause leaky gut are dairy and soy intolerances, Lyme Disease, parasites, yeast infection, thyroid and/or adrenal problems, when your gut has been overrun by bad bacteria (often caused by candida), which can be caused by antibiotics for instance, and by a lectin intolerance (gluten is one of the lectins). Lectin foods and nightshade foods simply aren't all that healthy, and many people would feel much better if they would limit their consumption. I know there are other causes, but I can't think of any more right now.

I'd have to do some research to find out about other causes, but my computer is down right now. I am running it off a Linux C D, and if I do too much it will freeze up. I will be really up and running again by some time next week.

And Rachel, I don't believe you can prove that a non-celiac gluten intolerance is always caused by something else, and isn't ever a problem in itself. When wheat was in its original form, very few people were intolerant to it, and celiac disease was very rare. But when scientists increased the gluten in wheat by 60% or more to make it stick better, because kneading dough with cold metal machines (versus warm hands) in commercial bakeries turned out inferior bread, that is when many people couldn't handle wheat any more. Nobody is supposed to get that much gluten, which is indigestible by the human body.

[tiredandsick]

"Other things that can cause leaky gut are dairy and soy intolerances, Lyme Disease, parasites, yeast infection, thyroid and/or adrenal problems"

This really caught my attention. Are you saying that thyroid insufficiency can possibly cause a leaky gut syndrome? I was recently diagnosed with hypothyroid, even though I am quite thin and have a low BMI. If something like that is possibly the case for me, does that mean that after going gluten free until my thyroid meds regulate my hormone levels, that I could maybe eat all foods including gluten without a problem? Not for sure of course, but would it be a possibility?

[Rachel--24]

And Rachel, I don't believe you can prove that a non-celiac gluten intolerance is always caused by something else, and isn't ever a problem in itself.

Ursa,

I never said anywhere that gluten intolerance cant be a problem all by itself. I said that sometimes it can be very simple. Sometimes people are intolerant to gluten simply because they are deficient in the enzyme necessary to break it down for proper digestion. Many people in this situation replace the enzyme and then have no difficulties consuming gluten.

Obviously the only "treatment" in that case is to follow the diet in order to avoid symptoms....or supplement the enzymes to properly digest the protein.

Otherwise by continuing to consume gluten without the ability to properly break it down....you are more than likely going to end up with inflammation in the gut....and eventually this could result in leaky gut and additional problems...including autoimmune disease, infection, etc.

Usually by the time leaky gut is occuring there are multiple factors involved.

Even in this case there is usually *something* that has occured to result in a deficiency of the enzyme. This enzyme can be blocked by heavy metals...especially mercury. Typically things in the body dont become "faulty" all on their own.

When the symptoms resolve completely...most people will go on with their life...happily continuing with the gluten free diet.

When the symtpoms DONT resolve completely....people will go on wondering why they havent yet "healed"....and they will wonder why they still suffer symtpoms and why new food intolerances keep popping up. First it was gluten, then it was dairy, then it was soy, then corn, then nightshades...and on and on.

Both groups of people may have tested positive for gluten intolerance through Enterolab....and yet the majority that I have seen continue to have problems.

The original question in this topic was with regards to the validity of the stool tests....and I gave my honest opinion....based on my own experience, based on research, and based on what I have witnessed right here on these boards over the past few years.

And yes...it CAN be proven that this larger group of people who continue to have health problems DO have underlying issues which have led to their problems with gluten. It is proven when the right tests are done and when the underlying issues are diagnosed and treated. It is proven when the gut heals and gluten is no longer such a problem.

I am someone who tested positive for gluten intolerance through Enterolab testing so I do have some experience with this myself. All of my Celiac tests were negative....however, my Enterolab results were positive across the board....including a very high malabsorption score. Of course, I was told that I needed to be gluten free for life....and that was the end of it.

The diet did not improve the malabsorption problem...nor were my health problems resolved. Eventually, I was able to improve my health...and the malabsorption is much improved as well...however, none of it had anything to do with gluten. I am no longer gluten free and I do not have a worsening of symptoms as a result of re-introducing gluten 7 months ago.

Even if something cant be proven with 100% certainty.....we can definately come close if we search hard enough for the truth. In my opinion there is nothing wrong with being thorough when it comes to our health.....it is far more dangerous to come to "self diagnose" or to "guess" as to which diseases we might have.

Of course there is no harm in the gluten-free diet....BUT....if someone is falsely under the impression that the diet is their "cure"....and in the meantime they have other issues which are left untreated....then yes...this can cause more harm in the longterm.

Nobody is supposed to get that much gluten, which is indigestible by the human body.

Gluten isnt indigestible by the human body. If it were...NOONE would be able to eat it without getting sick. We come equipped with an enzyme which is necessary for the digestion of gluten. Its called dipeptidyl peptidase IV (DPPIV).

Again, we can look at the autistic population. These kids have MAJOR problems with gluten and casein. Is it really because at such at a young age they've already bombarded themselves with so much gluteney food that they are now damaged for life?? Remember, some of these kids are born with problems and some were developing symptoms even before these foods were introduced into their diet.

Most importantly, these kids have lost the ability to digest the foods. They have enzyme deficiencies, they have imbalances of all kinds, they have leaky gut, they have infections, they have detoxification problems, they have heavy metal issues, etc.

Not surprisingly, they have alot of the same issues that are found in adults who have non-celiac gluten intolerance and ongoing health problems....including additional food intolerances, symptoms of Fibro/CFS, leaky gut, candida, chemical sensitivities, Lyme Disease, etc.

How do you know that someone here who tests negative for Celiac does not have any of these issues? How do you know that something hasnt inhibited the function of the DPPIV enzyme? How do you know that if they test positive for gluten intolerance with Enterolab they have their answer? Noone can possibly know that....which is why I prefer to give all of the additional info...*just in case*....this person does not have the desired results while on the diet.

But I do agree with you that if there is a Celiac gene present, along with symptoms which are totally resolved while on the diet...then yes, in that case the liklihood of Celiac would be high.

[Rachel--24]

This really caught my attention. Are you saying that thyroid insufficiency can possibly cause a leaky gut syndrome?

Typically its the other way around. Leaky Gut is thought to be the "gateway" for autoimmunity. Thyroid disease is linked to increased intestinal permeability....as are a long list of other conditions.

[nora-n]

Owens from the Low Oxalate Webpage has also written some papers on leaky gut in relation to oxalate. Low oxalate diet is the latest thing regarding autistic kids, by the way.

Open Original Shared Link

from Open Original Shared Link

These kids are already on a Gluten-free Casein-free diet , and often also on the SCD and they have lists to wash the SCD diet against oxalate foods.

More on leaky gut: there is lots on zonulin in pubmed now, zonulin opens the tight junctions in the gut in everyone temporarily, but this lasts shorter in non-celiacs and longer in celiacs. Just check zonulin on www.pubmed.com

And, some scientists say about 40% are gluten-sensite and should not consume gluten.

And, it is not even the new crosses/mutations (actually the number of genes in wheat have increased dramatically) of the modern wheat after 1945 I think , that are so bad now, but in teh last years dramatic things have been going on silently in teh baking industry here, because of the focus on coarse bread being healty they have adde more bran and coarse things to dough, and seeds etc, and rye to e it darker, and they have added lots of -guess what---GLUTEN to all the coarse breads to make them rise high. So all of them who have changed to coarse and dark bread because it is so healthy have ingested so much more gluten.

This is in Scandinavia in Europe, I cannot speak for other places. The spokesperson for the baking industry answered to questions about adding all this gluten, that they would stop it immediately if they get proof that it is harmful....(they bake quick bread here and do not let the bread rise twice like they used to in the old days, and down in Europe they almost always bake dark bread with a surdough culture and then one does not need to add gluten I think)

Here they eat bread for breakfast, lunch and evening meal. Schoolkids take sandwiches with them as they do not serve warm food. Secondary shcools have canteens , but they serve baguettes...

nora

[gfpaperdoll]

I would just like to point out that anyone that uses people on this board or any other celiac board as a basis for "numbers" concerning an issue are getting warped results. Because most of the people that I know that have celiac do not post on any forums. & a lot of the people that I have met that have celiac are ill informed, because their doctors did not give them any information & they also do not even attend any support meetings. For one the elderly neighbors behind me that have been gluten-free for 25 years, have never been to a support group & they do not use the computer. Although, we are in the city, they grow their own food & can each summer. & I did not even know they were gluten-free until I started talking to them about me going gluten-free, I was amazed that they did not eat wheat. Of all the conversations that we had over the back fence, it never came up! She also did not have a cookbook - I gave her one & a lot of information...

One guy at work that I used to provide lunch to one day a week (he has now moved) fell in the above situation, he has a wife & three kids & did not have time to post on forums etc & his wife was not interested in going to any celiac meetings - with I am sure where she thought there would be a lot of sick weird people. He nearly cried when I brought him pie. He had not had a pie since he had been gluten-free. He was also still depressed about his limited diet, until I started feeding him delicious meals.

About my diet, some might think it is limiting, but hey I went to Pappadeax's with my family for lunch yesterday, then we went to Rice supermarket & each person got a little bag of See's chocolates & then we went to the movies & I had popcorn. So I do not feel deprived. I also do not eat till 11:00a.m. each day, for me it is the right decision, not for everyone but works for me.

It is not that I cannot eat some things, it is that I choose not to because I do not think it is healthy for me, from what I have learned over the years. gluten-free can be eating junk all day just like a regular diet can be healthy or full of junk. I happen to eat a very healthy gluten-free diet. I love to have cake, but for me it is a special occasion not an every weekend treat. Plus I find that with my diet that I do not even want those things, which I find totally unbelievable. I know a lady that has a gluten-free bakery & I can order anything from her anytime that I want to, but you know I just do not want it. I am thinking about getting something special for my birthday this year & inviting all my gluten-free friends.

I also do not eat peas & peanut butter because I think that they contribute to leaky gut. Does that mean that I never eat peanuts? no, I occasionally will have something, right now I have a jar of smuckers all natural peanut butter that I am thinking of making the flourless peanut butter cookies. Mostly I have replaced peanut butter with almond butter. But I thought that I would make some cookies to share with a friend. Well & I saw on TV, Paula Deen, make them & then she put strawberry jam on them & then sandwiched them between strawberry ice cream & then rolled them in butterscotch chips. I thought this would be a good thing to make with the grandkids. Guess if I am rolling the chips in ice cream - no need to buy dairy free ones !

[Rachel--24]

Nora,

I do believe that oxalates can cause damage to the gut.....basically anything which the body is not able to breakdown and eliminate can contribute to inflammation. When oxalates accumulate in the body they can cause much harm.

I'm on a low oxalate diet and was just last week tested for several things....including oxalate in urine.

Another reason for leaky gut is abnormal sulfur metabolism resulting in low levels of sulfate. Sulfate is necessary for detoxification...and it is also needed to maintain the integrity of the intestinal lining. Low sulfate can result in increased intestinal permeability (leaky gut).

In this situation food allergies are a consequence of low sulfate and increased intestinal permeability. A large percentage of autistic children have low sulfate. Removing gluten from the diet is essential...and many symptoms caused by gluten intolerance are reduced.....but this does not fix the problem of low sulfate levels and leaky gut.

Evidence for abnormal sulfate chemistry in autism is revealed by low plasma levels of inorganic sulfate; sulfur oxidation deficiencies; higher ratios between plasma cysteine and sulfate; higher levels of urinary sulfite, sulfate, and thiosulfate; and reduced levels of urinary thiocyanate in children with autism.

Sulfate is necessary for the integrity of the gastrointestinal (GI) lining. Several studies indicate abnormal GI findings in autism, i.e., chronic colitis, altered intestinal permeability, epithelial pathology, and depleted sulfated glycosaminoglycans. In addition, sulfate is very important for detoxification, an issue that is becoming increasingly evident in autism.

The studies by Waring et al. that found abnormal sulfate chemistry in children with autism involved a specific population of children with autism that showed symptoms of autism after 15 months of age (most were at approximately two years of age), with food allergies and GI symptoms (e.g., frequent diarrhea, bloating, etc.).

Dr. Waring

[Rachel--24]

I would just like to point out that anyone that uses people on this board or any other celiac board as a basis for "numbers" concerning an issue are getting warped results.

I'm not trying to do a sophisticated study based on the entire population of people who are gluten sensitive......obviously that is not possible.

From what I've seen here (as well as other health related forums)....many people turn to Enterolab for a "diagnosis". After that a large percentage of those people wonder why all of their problems are not resolving.

Its because Enterolab is not a diagnostic test....its a food intolerance test.

Alot of people have food intolerances.....and the reasons for this vary.

[Rachel--24]

Tiredandsick.....there are a large number of factors that can cause or contribute to damage of the lining. Here are some of them.

Antibiotics - because they lead to the overgrowth of abnormal flora in the gastrointestinal tract (bacteria, parasites, candida, fungi)

Alcohol and caffeine - These irritate the gut wall.

Foods and beverages contaminated by parasites like Giardia lamblia, cryptosporidium, blastocystis hominis and others

Foods and beverages contaminated by bacteria like helicobacter pylori, klebsiella, citrobacter, pseudomonas and others

Chemicals in fermented and processed food (dyes, preservatives, peroxidized fats)

Insufficient digestive enzymes

NSAIDS (non-steroidal anti-inflammatory drugs) like ASA, ibuprofen, indomethacin, etc.

Prescription corticosteroids (e.g. prednisone, hydrocortisone, DepoMedrol, etc.)

High refined carbohydrate diet (e.g. candy bars, cookies, cake, soft drinks, white bread)

Prescription hormones like the birth control pill

Mold and fungal mycotoxins in stored grains, fruit and refined carbohydrates

Dysbiosis and gastrointestinal Disease

Chemo-therapy and radiation therapy causing immune overload

Environmental contaminants

Chronic stress - Stress reduces blood flow to the gut leaving it unable to repair itself.

Poor liver function resulting in inflammatory toxins being excreted into the intestines in bile.

[Ursa Major]

Even if something cant be proven with 100% certainty.....we can definately come close if we search hard enough for the truth. In my opinion there is nothing wrong with being thorough when it comes to our health.....it is far more dangerous to come to "self diagnose" or to "guess" as to which diseases we might have.

Well, the problem with me always having to self diagnose is, that for over fifty years doctors have failed me, and all my problems have all been 'in my head'. If more doctors would know what they are doing, and would actually do tests to find out what is wrong, and why people have certain issues rather than 'diagnosing' IBS and fibro and just mental problems if they can't find the underlying causes right away, then I wouldn't have to self-diagnose.

The gluten-free diet seemed to have solved all my problems at the beginning. But then after three months, I discovered all my other intolerances. Since then my general health has been going downhill again, and is getting worse.

So, I am now doing testing with a naturopathic doctor to figure out why I am not getting better. I am still waiting for the results of the hair analysis (the lab it was sent to was bought by a company in the States......... it's a long story). I am having all my amalgam fillings replaced. I might order the Lyme disease test from IgeneX................ I won't give up until we figure it out.

But it is possible that it all began because I was gluten intolerant to begin with. And I was a 'stick figure' as a child, and my mother tried to fatten me up with lots of flour products! She stuffed me with them. And I got worse and worse, and nobody ever made the connection.

But I am also somewhat autistic, and I am going to ask my naturopath about the sulfates. Maybe that is the key, who knows. I will pursue all of those possibilities.

[tiredandsick]

I really appreciate all of these responses, and it is good to hear opposing views as well, because it gives a more well rounded story.

Rachel--24, You seem to know more about the components of "intolerance" and its cause as anybody that I have spoken with. Also you have given me a better explanation about enterolab tests than anybody as well. Thankyou. I would love to be able to hear more about some of this stuff from you if you get a chance.

I am trying to research as much as I can, I just really need to get this all figured out. I just want my anemia and osteoporosis to be fixed before they get any worse. I feel like my next step is to see if I can find if I have something that has caused a leaky gut. You listed some possibilities, but most really don't apply to me. I exercise regularly, I eat a very healthy diet of almost no processed foods, I have not had any antibiotics in about 4 years, I don't really drink alcohol or much caffeine at all. I don't take any pills(accept for my thyroid which I started recently).

About enterolab. My Antitissue Transglutaminase was quite positive, and that is supposedly the same thing they test for in your blood to test for celiac. Do our bodies make that even just for an intolerance? Because the GI doc told me that that blood test was specific for actual celiac, which I was negative, but enterolab said I was positive(for the antitissue transglutaminase). ??? Is it something different if it is in the stool test than if it is in the blood test? My malabsorption level was very high, but I understand this a little better. It is a pretty basic concept, and not very specific as to why I am not absorbing. Enterolab said that I have a celiac gene. Are their tests for that a little more in line with the "conventional" tests? Obviously a stool test is quite a bit different than a blood test, but do you know if they are more along the lines of "traditional" rules for possible celiac? I have a family member dx by biopsy who does have the gene.

Also: enterolab said that I have a smaller problem with casein, but I have no reaction to it as far as I can tell.

Is there any chance that a problem with my thyroid could have come first and caused any type of leaky gut issue? I understand that it would most likely go the other way. And I do understand the concept of how that reaction can take place.

I have tried an elimination diet in the past and the only food(including gluten) that I had an immediate reaction to was eggs. I have been eating eggs all my life without any problems. I even ate eggs without any problems for a while after becoming symptomatic, and then all of a sudden, they didn't work any more. This makes sense with a leaky gut situation, but still doesn't help me find out what could have caused it(if this is my problem that is), because clearly the problem with eggs did not come first, more like just a symptom.

sorry for rambling on for so long, just kinda at a loss for where to go from here.