Why Is Endoscopy Still "the Gold Standard"?

[sbj]

What is wrong with putting a child from a family with a history of celiac and issues suggestive of it on the diet? If the diet helps them you have the answer, if it doesn't then look elsewhere. It is well known that the rates of false negatives for children is even higher than it is for adults. If the history is there and the symptoms are there and the diet gives relief from those symptoms then a lot of needless expense and possibly years of misdiagnosis and ineffective and dangerous meds could be avoided. I would give anything to have had a doctor even consider that it was celiac that was destroying my body and that blood tests might not have been right. My life and my childrens would have been quite different it they had.

Where to start? In general, one could try the diet without harming the child. In some cases, however, where the underlying condition was serious - say ulcers or tumors -'trying' a diet for a while could be quite harmful. I believe this might be why doctors sometimes order the endoscopy even with positive blood results - in an overabundance of caution. And when it comes to children many would argue that an overabundance of caution is appropriate. Secondly, the gluten free diet has been known to provide temporary relief for a number of other conditions, so you end up with persons who go on their merry way thinking they've solved the problem when, in fact, they haven't. This forum has chronicled several stories of persons who thought they had celiac only to find it was something else entirely. This is one of the dangers of self-diagnosis. Thirdly, if you are worried about needless expense (and where a child is concerned I don't quite follow this?) - but if you are concerned about 'needless' expense then certainly starting an expensive gluten free diet when the problem is due to something else is a 'needless' expense.

I'm sorry that you didn't have a good experience with your doctors. I don't mean to comment on your personal experience in any way. OTOH, I never would have known that I had celiac disease if not for the outstanding job of my HMO, my intern, my gastroenterologist, and the pathology group. Three cheers for Kaiser Permanente!

[mommida]

An endoscopy can rule out any other conditions that may also be present. Other conditions that could also be present include... overgrowth of yeast, H. Ployri, parasites, abnormalities of the the digestive system (celiac3270's story from the board), and other disorders that have yet to be linked to Celiac. I know from making this decision as a parent how difficult it is. We chose not to have the endoscopy because my daughter's health was in such a decline she had to be hospitalized for dehydration and the hospital refused to do the procedure at the time. She had the endoscopy about 4 years later to discover she also has Eosinophilic Esophagitis (Diagnosed this past December 17th).

Long term benefits include that you have ruled out these other disorders and you can concentrate on the gluten free diet. It can also show proof of gluten free diet healing your child's intestines.

As a parent you are asking the questions you need to ask and being the advocate for your child. I want to tell you that you are doing a great job researching your options and you will do a great job managing the gluten free diet.

Sometimes the posts come accross harsh and sometimes the communication is not as clear as it should be.

[ravenwoodglass]

Where to start? In general, one could try the diet without harming the child. In some cases, however, where the underlying condition was serious - say ulcers or tumors -'trying' a diet for a while could be quite harmful.

It would also most likely not give any relief for another condition that wasn't being caused or complicated by gluten to begin with and of course there could be other conditions that are present with celiac. As far as it helping other conditions, well sometimes it does because those conditions may be rooted in the gluten issue to begin with. As we learn more I think more will come out about that. My arthritis is a prime example, I was told I would have to learn to live with it and I do have a gene strongly associated with RA in this country. It is known that the gluten free diet helps some RA patients. Well my arthtitis has been in remission now since 2002. So am I an arthritis patient who just happens to respond to the gluten-free diet or am I a celiac whose autoimmune response was destroying my joints? For me the answer to that is obvious.

I certainly am not saying the endo has no value at all. I just don't feel with a strong family history and classic celiac symptoms and relief on the diet that they are always needed.

It is however a personal choice and there will always be a variety of different views on any topic here. I consider it a good thing as most queries have 'both sides of the coin' responses which helps folks make the decision that is right for them.

[sbj]

I certainly am not saying the endo has no value at all. I just don't feel with a strong family history and classic celiac symptoms and relief on the diet that they are always needed . . . I consider it a good thing as most queries have 'both sides of the coin' responses which helps folks make the decision that is right for them.

I am trying to find something to disagree with but I can't!

I certainly agree that the endoscopy is not always necessary. I often provide this link (Open Original Shared Link) and reprint the following portion which points out that the endoscopy is not necessary for diagnosis:

"Research in the most recent issue of Alimentary Pharmacology & Therapeutics shows that a transglutaminase antibody level can be defined which gives a positive predictive value of 100 percent for celiac disease indicating that small bowel biopsy is no longer regarded as mandatory in patients with such high transglutaminase antibody levels . . . Researchers explored whether a small bowel biopsy is always required to establish the diagnosis . . . The researchers observed that all patients with transglutaminase antibody levels over 30 U/mL had characteristic small bowel mucosal lesions."

I merely took exception to the notion that in the absence of a celiac blood panel that a parent with the genetic propensity combined with celiac-like symptoms in a child was enough to self-diagnose celiac disease in the child and begin the gluten free diet. I think that is wrong and potentially dangerous; just trying a diet when your child is suffering with serious digestive issues is risky business if you are not sure what is going on. I believe, however, that you and I are in 100% agreement: Endo - sometimes required and a good idea, sometimes not needed or appropriate.

[ravenwoodglass]

I merely took exception to the notion that in the absence of a celiac blood panel that a parent with the genetic propensity combined with celiac-like symptoms in a child was enough to self-diagnose celiac disease in the child and begin the gluten free diet. I think that is wrong and potentially dangerous; just trying a diet when your child is suffering with serious digestive issues is risky business if you are not sure what is going on. I believe, however, that you and I are in 100% agreement: Endo - sometimes required and a good idea, sometimes not needed or appropriate.

I think we are pretty much in agreement. I do always say to get the panel before doing anything else and if fact think it should be something that all children should have at age 4 and again at puberty and it should be the first thing done when folks have symptoms. The one thing I think that a lot of doctors forget is that the panel does have false negatives especially in young children. Something that also needs to be taken into account is whether some of the persons family members were firmly diagnosed but had low or negative panels at diagnosis. We don't really know what causes false negatives and it may be something that is part of the family inheritance.

Many times, with children especially, the change on the diet is fast and dramatic. If a parent has to wait weeks or even months for the child to get into a specialist it might be prudent to just give it a try while waiting IF the parent is able to go with dietary results and doesn't have a need for a positive biopsy to confirm. Total resolution of symptoms especially with a strong family history would be pretty diagnostic in itself.

[david2000]

I posted this on another board, but wanted to make sure others see it. The genetic test is apparently not near as well known as it should be and we feel very lucky to find a doctor to recommend this to us which saved us from an endoscopy.

Well after several years of symptoms that pointed to my daughter having celiac, but doctors doing the tests twice and both coming back negative we continued down the wrong path doing all kinds of other tests and having her on reflux medicine for over a year. Unfortunately we were never told these could be falsely negative and we never thought of researching on our own. My wife recently went to a new doctor and he told her they can be false negative AND, and this is the kicker, there is another blood test that can check for one of two genetic markers to see if you can have celiac. It was covered by our insurance, my wife came back positive, and answered many of our longterm questions about her as well, and my 4 year old came back positive. To be clear this test will do two things - tell you for sure if you CAN have it. If you dont have either of these markers you cannot. If you do have one of these markers you could have celiac, or it could manifest itself at some point. It was clear from both my wife and daughters symptoms and from the doctors point of view that they both had it given all the symptoms and having the genetic marker. What does bother us is this test seems to be very much not known about as we have had litterally dozens of doctors appointments with many different doctors in their specialties at many different hospitals and in going back to some of them they were surprised to hear about it. Our primary care physician actually thanked us for helping him help his other patients. We did not want to do the endoscopy to find out for sure, so this was a great option for us. Anyway, I hope this helps.

Thanks, David

[david2000]

I posted this on another board, but wanted to make sure others see it. The genetic test is apparently not near as well known as it should be and we feel very lucky to find a doctor to recommend this to us which saved us from an endoscopy.

Well after several years of symptoms that pointed to my daughter having celiac, but doctors doing the tests twice and both coming back negative we continued down the wrong path doing all kinds of other tests and having her on reflux medicine for over a year. Unfortunately we were never told these could be falsely negative and we never thought of researching on our own. My wife recently went to a new doctor and he told her they can be false negative AND, and this is the kicker, there is another blood test that can check for one of two genetic markers to see if you can have celiac. It was covered by our insurance, my wife came back positive, and answered many of our longterm questions about her as well, and my 4 year old came back positive. To be clear this test will do two things - tell you for sure if you CAN have it. If you dont have either of these markers you cannot. If you do have one of these markers you could have celiac, or it could manifest itself at some point. It was clear from both my wife and daughters symptoms and from the doctors point of view that they both had it given all the symptoms and having the genetic marker. What does bother us is this test seems to be very much not known about as we have had litterally dozens of doctors appointments with many different doctors in their specialties at many different hospitals and in going back to some of them they were surprised to hear about it. Our primary care physician actually thanked us for helping him help his other patients. We did not want to do the endoscopy to find out for sure, so this was a great option for us. Anyway, I hope this helps.

Thanks, David

Well it does also appear this genetic test can be false negative as well which we were not told. Regardless it might be a logical next step in testing before the endoscopy...

https://www.celiac.com/articles/58/1/Geneti...ting/Page1.html

[Tim-n-VA]

I think that the biopsy is considered the gold standard in context. That is, a typical person getting a biopsy to test for celiac has symptoms and has already had a positive blood test. Since any of these together can be false indicators, having all of those is a "gold standard". I suspect that some doctors and patients don't understand the statistical concepts of multiple tests, etc. and I suspect that in a lot of cases the extended caveat/explanation is just too much to say each time you refer to the tests.

"Low risk" doesn't mean no risk. In fact, the phrase implies that there is some risk. People die from low risk things everyday. That doesn't mean the activity was not low risk. When there is a bad outcome it is unfortunate for the ones affected but it doesn't mean that the events were risky.

As to what harm could come from just trying the diet and seeing if it works: There are frequent topics started on this board where people are struggling with the decision to go back on a diet to get a diagnosis. To tell someone to try to diet without the context of how bad it will be if they later want a mainstream medical diagnosis is just bad advice.

[Fiddle-Faddle]

The genetic test can rule celiac in, but not rule it out.

Here in the US, doctors recognize 2 genes as being linked with celiac.

In Europe and Asia, SEVEN are recognized.

Here on this board, there are several members who posted in the last 2-3 years that they were biopsy-diagnosed with celiac disease, yet they did NOT have either of the 2 genes recognized as

"celiac" by their doctors.

[Gemini]

Open Original Shared Link, the converse does not follow either -- a negative EMA does not mean that you do NOT have celiac disease.

as i, perhaps ineffectively, tried to explain -- a breakdown of the endomysium occurs anytime there is chronic damage of muscle fibers in the intestinal mucosa. these proteins enter the bloodstream and there is an immune response to them.

the most common of condition which can cause this reaction is alcoholism -- which occurs at about 3x the frequency of the highest estimates of celiac disease.

'known' alcoholics (and others, e.g., patients with inflammatory bowel disease) were pre-screened and eliminated from the studies that lead to your description of the problem.

when tests are performed in the population-at-large (ie., the random person who goes to the doctor with a complaint); diagnoses are based on a panel of tests; taking into account both Open Original Shared Link.

So....what you are saying is that the present medical criteria, of which many people are so adamantly hung up on for a diagnosis, is wrong? I understand the mechanism behind the EMA test and what the ensuing reaction is but, again, every medical article I have read and every doctor I have questioned about the EMA test and it's validity has emphatically stated it is 100 % specific to Celiac Disease and, of course, like all other blood antibody testing, a negative does not mean you do not have celiac disease. However, most of the people writing into this forum are here because profound symptoms that would suggest Celiac, not alcoholism. Also, it's pretty easy to tell if someone is abusing alcohol so that can be taken into account for diagnostic reasons. I think it highly unlikely that a person presenting with celiac disease symptoms would be steered down the path of being a potential alcoholic, unless it's obvious they are abusing it. The EMA is being included by most labs in the Celiac panel because it's one of the most reliable tests. It's the best of what we have at the moment, and coupled with gene testing and dietary trial, it's a far better indicator for diagnosing celiac disease than a biopsy, which is totally hit or miss.

[Janeti]

I agree with Gemini. I had 2 endos and was told by the GI that by law, they are only able to go 2 inches into the small intestine. I'm not sure but with 22 feet of small intestine, how accurate can that be? It was fine for me, but for for my daughter who has alot of " celiac symptoms" she is scared and does not want to go through that. She simply is gluten-free, and feels much, much better. I know as a parent it is a big decision to make.

[sbj]

I agree with Gemini. I had 2 endos and was told by the GI that by law, they are only able to go 2 inches into the small intestine. I'm not sure but with 22 feet of small intestine, how accurate can that be? It was fine for me, but for for my daughter who has alot of " celiac symptoms" she is scared and does not want to go through that. She simply is gluten-free, and feels much, much better. I know as a parent it is a big decision to make.

I just read about a doctor who was sued for malpractice because he failed to perform an endoscopy - so I think that might be a concern for many doctors. That is, if they say you have celiac disease they'd better be darned sure it isn't something worse - like stomach cancer. I think that's why they sometimes ask you to get the endoscopy - just trying to be extra safe and sure.

[sugarsue]

With all the well informed replies you have already received, my response is probably not even necessary! But I wanted to put in my 2 cents worth which is that we were never give the option of a biosy. I am glad to not have to have made the decision whether to put them through that or not.

That said, I wish I knew whether my 7 yr old has DH or not. I wish I knew for sure whether my 6 yr old has celiac's or not. They both know they are so much improved on gluten free diets and they would not eat gluten on purpose for any reason now (pretty huge considering they are onlly 6 and yrs old). When they are older, if they feel the need for a gluten challenge, they can do that. Gluten free diet is healthy and safe. I would recommend it to anyone who has issues they are trying to resolve!

CYBER HUGS!

Susan

[gfb1]

So....what you are saying is that the present medical criteria, of which many people are so adamantly hung up on for a diagnosis, is wrong?

yes; it is incorrect -- as an absolute.

diagnoses are ALWAYS a made by evaluating multiple test results and, obviously, patient examination. if anything was 100% accurate and predictive of ANY disease -- to paraphrase dr.house -- 'so, you're saying that medical school thing was a waste of time??'

the EMA test itself is not 100% precise -- in that the result is not always a true measure of the EMA in the bloodstream. complicate assay error with human error -- then try to figure out if the error is in the positive or negative direction.

I understand the mechanism behind the EMA test and what the ensuing reaction is but, again, every medical article I have read and every doctor I have questioned about the EMA test and it's validity has emphatically stated it is 100 % specific to Celiac Disease and, of course, like all other blood antibody testing, a negative does not mean you do not have celiac disease. However, most of the people writing into this forum are here because profound symptoms that would suggest Celiac, not alcoholism. Also,

it's pretty easy to tell if someone is abusing alcohol so that can be taken into account for diagnostic reasons.

i don't mean to be flip/glib; but, you haven't known many alcoholics. alcoholism is an extremely insidious and devious disease. all alcoholics are not found in the gutter; and more often than not -- the doctor is the last to know.

I think it highly unlikely that a person presenting with celiac disease symptoms would be steered down the path of being a potential alcoholic, unless it's obvious they are abusing it. The EMA is being included by most labs in the Celiac panel because it's one of the most reliable tests. It's the best of what we have at the moment, and coupled with gene testing and dietary trial, it's a far better indicator for diagnosing celiac disease than a biopsy, which is totally hit or miss.

again, the genetic testing is great; and i'm sure that a few companies are making lots of $$$. but, it is NOT a genetic test for celiac disease. it may be a test for a predisposition to an immune response to the gliadin peptide sequence; but, that's all.

i am sure from an historical point of view; celiac disease was always considered to be an intestinal disorder -- which, i consider the correct approach. contemporary views of celiac disease contain an allergic/antigenic point of view and have broadened the common perception of the disease to what amounts to be an allergy to gluten.

on the one hand, there are clearly people allergic to gluten. on the other hand, in 'classical' celiac disease the antigenic response only occurred AFTER intestinal damage -- hence, endoscopy/pathology was the gold standard.

[Gemini]

yes; it is incorrect -- as an absolute.

diagnoses are ALWAYS a made by evaluating multiple test results and, obviously, patient examination. if anything was 100% accurate and predictive of ANY disease -- to paraphrase dr.house -- 'so, you're saying that medical school thing was a waste of time??'

the EMA test itself is not 100% precise -- in that the result is not always a true measure of the EMA in the bloodstream. complicate assay error with human error -- then try to figure out if the error is in the positive or negative direction.

OK....now I see where you are coming from. I don't think I said it is 100% absolute with regards to a diagnosis but that it is 100% specific to Celiac Disease. So if a patient presents with Celiac symptoms and has a positive tTg and EMA, which was how I was diagnosed, many progressive doctors will give a definitive diagnosis on this alone. Remember, no other disease state will cause a positive except Celiac Disease, with regards to the EMA. And, yes, no test is absolute, including the biopsy itself. If you are in early stage Celiac and haven't developed enough damage to register on a biopsy, you will be told you do not have celiac disease and be sent on your miserable way. Since this is paraded as the "Gold Standard" for diagnosis, I can only surmise that this is one of the MAJOR reasons it takes 11 years to diagnose someone properly. I consider the biopsy as iffy as the blood screening, unless you are at end stage and near to death...which is how I ended up diagnosing myself and then requesting blood work. It was that close for me and I will never forget how sick I was.

i don't mean to be flip/glib; but, you haven't known many alcoholics. alcoholism is an extremely insidious and devious disease. all alcoholics are not found in the gutter; and more often than not -- the doctor is the last to know.

I also will not try to be flip or glib about this but I am an expert on alcoholism...really. My father was a functional alcoholic for years and, along with Celiac, he is slowly dying from his drinking. My family is rife with alcoholics and denialists and enablers to the problem so I have almost 50 years of experience dealing with this BS. I am also going to give my opinion on alcoholism and no one has to agree with me. Saying that alcoholism is a disease is an insult to anyone with a real disease. It's a behavioral problem and this is how it is treated in Europe.....after studying the issue and from what I experienced growing up in an alcoholic household, I think the Europeans have it right. I find it as insulting as saying that obesity is a disease. AA touts this attitude that you have absolutely no control over it but I disagree, to an extent, because if this were the case, no one would ever successfully recover from it. If you want to call it a disease, it is a disease of denial. If you can't admit you have a problem, you will never be well and kick the habit. It all starts there. To this day, my father will never admit he is an alcoholic and it has cost him relationships and his health.

Doctor's know who abuse alcohol but it is so socially acceptable in our country, they don't say anything until the health really starts to slide. If you smoke, which isn't socially acceptable, you will be hounded to death until you quit. Disgraceful attitudes because drinkers cost this country heavily yet are treated better. Even doctors practice denial on this one.

again, the genetic testing is great; and i'm sure that a few companies are making lots of $$$. but, it is NOT a genetic test for celiac disease. it may be a test for a predisposition to an immune response to the gliadin peptide sequence; but, that's all.

I am well aware that gene testing is not a test for Celiac as I had my gene testing done to back up my diagnosis, for the non-believers. As a double DQ-2, that is as good as it gets as far as pre-disposition is concerned. It's not fool proof as there are the few that carry no genes (at least those only recognized by the venerable AMA) but the majority of Celiacs will possess at least one copy of a Celiac/GS gene. It's another bullet in the arsenal of diagnosis.

i am sure from an historical point of view; celiac disease was always considered to be an intestinal disorder -- which, i consider the correct approach. contemporary views of celiac disease contain an allergic/antigenic point of view and have broadened the common perception of the disease to what amounts to be an allergy to gluten.

on the one hand, there are clearly people allergic to gluten. on the other hand, in 'classical' celiac disease the antigenic response only occurred AFTER intestinal damage -- hence, endoscopy/pathology was the gold standard.

There are definitely those who have an allergy to gluten and those of us who have an intolerance to gluten.....vastly different disease processes. It's apples and oranges, as far as physical damage is concerned. Celiac is an autoimmune problem which results in damage to the small intestine so calling it an intestinal disorder only, seems incorrect to me. Obviously with time and study, that attitude has been corrected and now that there are many ways to figure out a diagnosis, people won't be pushed into having invasive procedures they may not need. You can diagnose absolutely on blood work, symptoms, gene testing and dietary response. However, there are endoscopy wings to be paid for and lawsuits to avoid so there will be opposition to change in the medical field and there will still be many, many people who suffer needlessly. I know of no other disease where the criteria for diagnosis is so high as Celiac. Maybe it does just all boil down to liability!

[lbd]

I think what is interesting is that alcoholism and gluten sensitivity seem to be related, probably because of the incorrect processing of the gliadin protein, though not necessarily the same processing. This may point to a genetic link, though environmental pressures (including behavioral ones) are certainly a factor in the expression of many genes. After all, if we had never discovered the farming of wheat and its gluten cousins, we wouldn't be having this discussion on this forum at all, would we? Gluten intolerance in all of its forms would be unknown.

As far as the testing for gluten intolerance, I can assure you that if there were a multimillion dollar making drug that was available for gluten sensitive individuals, every infant would be tested at birth and tests would be developed that were extremely sensitive. (Somehow I bet that the stool-testing done by some labs that are much more sensitive to gluten sensitivity would be highly recommended at that point). At any rate, I think it is close to criminal that doctors are telling patients that they are negative for celiac much less gluten sensitivity based on the highly inefficient tests currently recommended, whether blood or biopsy.

My sister was tested through Enterolab, as I was, and she not only shared a gluten sensitive allele with me, but she also had a celiac allele. She also had positive results for all of the stool tests, including casein. Her gastro told her that her blood tests were "normal" and of course, diagnosed IBS, and said that the gluten-free diet was too hard even though "we all could benefit from less wheat and dairy." I recommended that my sister try going gluten-free and she is feeling much better already after one week. She is now committed 100% to the gluten-free diet. I shudder to think what her problems might have progressed to if she had not listened to the lab's and my own recommendations. Certainly, going gluten-free won't hurt her, but not going gluten-free might.

Laurie

[Jestgar]

I think what is interesting is that alcoholism and gluten sensitivity seem to be related,

Based on what information?

[lbd]

Here you go, Jestgar:

Open Original Shared Link

This one concentrates more on the link between wheat gluten and its effect on ethanol metbolism, albeit in rats. Not a genetic connection, but certainly a gluten one:

Open Original Shared Link

And there are numerous studies on gluten and its opioid derivatives. For the alcoholics that I have known, multiple drug usage in an attempt to "self-medicate" has been the norm.

Open Original Shared Link

I believe I said there "may be a genetic link." That's merely a hypothesis on my part, certainly not a theory or even a proven fact. Just some indications that lead me to believe that is a possibility.

Laurie

[Jestgar]

Here you go, Jestgar:

Open Original Shared Link

This one concentrates more on the link between wheat gluten and its effect on ethanol metbolism, albeit in rats. Not a genetic connection, but certainly a gluten one:

Open Original Shared Link

And there are numerous studies on gluten and its opioid derivatives. For the alcoholics that I have known, multiple drug usage in an attempt to "self-medicate" has been the norm.

Open Original Shared Link

I believe I said there "may be a genetic link." That's merely a hypothesis on my part, certainly not a theory or even a proven fact. Just some indications that lead me to believe that is a possibility.

Laurie

For some reason I can't open the first site, but the other two have nothing to do with alcoholism.

I think what is interesting is that alcoholism and gluten sensitivity seem to be related

[lbd]

The first link works but it was a mistake on my part since it talks about ghrelin, not gluten. Should have read it more carefully.

I'm not sure why you think the second two are not related. Yes, they do not link alcoholism and gluten directly, but may point to the mechanism behind my hypothesis. (Again, please note, this is a hypothesis on my part - sorry, I don't have the funds to perform the research )

Here is another link to opioid receptors and their role in alcoholism.

Open Original Shared Link

Certainly it is well known that the breakdown of gluten can produce opioids: Open Original Shared Link

Open Original Shared Link

...so not a genetic link but a possible link between the breakdown of gluten and alcoholism.

Why is it that one cannot post a response to anything on this forum without being jumped on by several self-appointed watchdogs? What a shame that the exchange of ideas cannot take place without having to produce twenty citations for every statement, yet these same watchdogs can say whatever they want. I will not be posting any more on this forum. There are more positive forums out there.

Laurie

[Jestgar]

Why is it that one cannot post a response to anything on this forum without being jumped on by several self-appointed watchdogs? What a shame that the exchange of ideas cannot take place without having to produce twenty citations for every statement, yet these same watchdogs can say whatever they want. I will not be posting any more on this forum. There are more positive forums out there.

Laurie

I did not challenge your ideas in any way. I only asked that you provide support for things you stated as fact.

Exchanging ideas is a good thing. Making false, or unsupported statements, and expecting everyone to just believe you, is not exchanging.

[happygirl]

Why do people ask for supporting facts, links, documentation?

Because there are people on here who are fascinated by this topic (gluten et al), who want to learn more about it, that see incorrect statements posted all day long, who understand beyond the "basics" of Celiac and want to understand a new topic, who want to have discussions based on facts.....

....and maybe, sometimes, its because we've never seen the topic before, we have learned something new, want to save that file, and then share it with someone else when they need the help.

and maybe, maybe, maybe, maybe, people want to learn and keep pushing the conversation to a higher level.

If you post something on a public forum, you are asking for a response.

Otherwise, the board would be a quiet place. And no one would learn anything.