Why Celiac "Experts" Are So Confused

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tex
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Why Celiac "Experts" Are So Confused

Post by tex »

Hi All,

For years, I've wondered why celiac experts continue to remain an underperforming segment of the medical industry. They just never seem to be able to get all their ducks in a row. I think I've figured out why - they often don't know what they're talking about, but that doesn't keep them from talking about it anyway.

One of the things that really bugs me about celiac "experts" is that they're notorious for refusing to admit when they're wrong, (of course, they're wrong most of the time, so it would probably keep them pretty busy, just owning up to their mistakes. :lol: ). I suppose that's a curse of being a wannabe expert, but it's not a very endearing attribute. They continue to blame their pathetic diagnostic record on "the increasing incidence rate of celiac disease", and similar BS, when even today, they seem to be only capable of diagnosing approximately one case out of every hundred. :shock: A 1% success rate is certainly nothing to brag about, so why don't they just admit that they don't understand how to properly diagnose the disease, and they don't have the diagnostic tools needed, to properly diagnose it? Of course, the 64 thousand dollar question is, "why don't they bother to figure out how to properly diagnose it?". Is that asking too much? After all, they've been aware of the disease for roughly 2,000 years, and it's not exactly rocket science.

Also, instead of bothering to collect accurate facts, on which to base their working knowledge, they continue to promote incorrect assumptions, half-truths, and omissions, as the source of their working knowledge. Even after their own research proves those claims to be wrong, they sometimes continue making the same incorrect assertions, as if it doesn't really matter what they say. It's impossible for anyone to advance the cause of science, when their work is based on initial "facts", that are not actually true. I have no way of knowing whether those little gems of knowledge originated as incorrect assumptions, or they were handed down as urban rumors, and the celiac community just adopted them as truths, but any way you look at it, they are bad science, and should have no place in mainstream medicine.

Consider, for example, the following quote from a recent article.
Other potential explanations for the rise in celiac disease rates, according to Fasano, include:

An increase in the amount of gluten found in grains. "We eat grains that are much more rich in glutens than they were 70 or 80 years ago," he said.
http://consumer.healthday.com/Article.asp?AID=651247

Do we actually "eat grains that are much more rich in glutens than they were 70 or 80 years ago"? I see this mistaken claim repeated so often, that even though I've disputed it previously, I feel obligated to once again expose it as a "mistaken assumption", (that sounds so much better than calling it a bald-faced lie).

Kansas is considered to be the breadbasket of the U. S., since that state produces more wheat than any other state in the union. So it's no coincidence that the Kansas State Agricultural Statistics Service has the most complete records of wheat production in the United States. Their records go all the way back to 1866, but unfortunately, they only started collecting and reporting data on protein content of their wheat crop somewhere in the late 1930's, so protein data were not available until the 1940's. Consider these representative average protein reports, from the Kansas wheat crop, over the years:

1948 wheat crop - average protein content - 12.4%
1958 wheat crop - average protein content - 11.8%
1968 wheat crop - average protein content - 11.7%
1978 wheat crop - average protein content - 12.0%
1988 wheat crop - average protein content - 12.5%
1998 wheat crop - average protein content - 11.5%

http://www.wheatmania.com/grainsofhisto ... etches.htm

That report ended with the new millennium, so we'll need to look at a more recent report, to get more recent figures.
The 2010 Kansas wheat crop produced 369 million bushels on 8.2 million harvested acres. It featured an average test weight of 61.4 pounds per bushel and protein of 12.0 percent, both of which exceed the 2009 averages of 61.0 pounds and 11.6 percent, respectively. The 10-year test-weight average is 60.3 pounds per bushel, and protein is 12.3 percent.
http://www.ksre.ksu.edu/library/crpsl2/mf2773.pdf

Does it appear that the protein content of Kansas wheat has changed significantly, over the years? It sure doesn't appear that way to me - it appears that the protein content has been remarkably stable, for many decades, (at least as long as wheat protein records have been maintained). We may eat more of those grains than we did 70 or 80 years ago, but the grain itself has changed little, if any. Of course, those who disagree with me will claim that the protein content of wheat is irrelevant - it's the gluten fraction of protein that has increased so dramatically over the decades. But if that's true, where's the evidence? I don't see any evidence of that claim, except as oft-repeated hearsay.

Also consider this quote from the article at the first link above, (from healthday):
"We're just too clean a society, so our immune systems aren't as developed as they should be," she said.

Another version of the hypothesis holds that the cleanliness of industrialized society has caused a fundamental change in the composition of the digestive bacteria contained within the gut, Fasano said.
OK, I'm not saying that such a claim may not have some merit, but I've lived on a farm all my life, and I played in the dirt, (a heck of a lot), when I was a kid, and our chickens, and ducks and geese, and dogs and cats played, (and presumably, defecated), in that same dirt. Every time I see that claim, I wonder if dirty, unsanitary kids actually grow up to be as healthy as the "experts" seem to think that they should. All I know is, it didn't work for me. :lol: My early unsanitary habits might have helped, but I don't believe for a second that it was "the cleanliness of industrialized society" that caused my digestive system problems - it was the food that I regularly ate, that was my undoing, IMO, (namely, gluten, of course).

Nearly every celiac-related article contains this obligatory comment:
However, people who suspect they have celiac disease should not go gluten-free before being tested. Doing that can interfere with the accuracy of the screening.

"It's very important that you don't change your diet before you are screened for celiac disease," Shilson said.
My response to that is, "Why? Are we supposed to do that so that our doctors can misdiagnose us, and convince us to continue eating gluten, and suffering from the symptoms of guten-sensitivity, for the rest of our life, so that we can continue to slowly destroy what's left of our health, by continuing to eat a toxic diet?". Statistically, we have roughly a 1% chance of being properly diagnosed, meaning that we have a 99% chance of being misdiagnosed. That doesn't sound like good advice to me, but then, I'm not a doctor, I'm just an ignorant old farm boy. :lol:

But, there is at least one redeeming value in that article, that's definitely worthy of our consideration, and it's found in this quote:
The disease interferes with proper digestion and, in children, prompts symptoms that include bloating, vomiting, diarrhea or constipation. Adults with celiac disease are less likely to show digestive symptoms but will develop problems such as anemia, fatigue, osteoporosis or arthritis as the disorder robs their bodies of vital nutrients.
The red emphasis is mine, of course, but I feel that this constitutes a very elegant observation, which offers some insight into why the disease is so often misdiagnosed in adults. Doctors have such a bad habit of trying to break issues down into individual problems, and treating the symptoms, (rather than taking a wholistic approach), that they tend to fail to see the forest for the trees. They treat anemia and fatigue, and they treat osteoporosis and arthritis, but they never bother to figure out what is causing those symptoms - they're just happy as larks to be writing prescriptions to treat all those "neat" symptoms. :lol: And that, IMO, is the problem - they're not particualrly motivated to discover the cause of the symptoms, because they're trained to treat symptoms, and to many doctors, treating symptoms seems to be their ultimate goal. Treating symptoms seems to satisfy the patients, for the most part, and so that makes the doctors happy.

Of course, a lot of adults present with the same obvious digestive system issues as celiac kids, and their doctors still misdiagnose them, so it's no wonder that they can't properly diagnose adults who present with less-obvious symptoms. :roll:

So the bottom line is, my biggest beef is that celiac doctors try to blame the unacceptably poor diagnostic statistics on all sorts of irrelevant satellite issues that may or may not matter, when the dominant problem is their own incompetence in diagnosing the disease. I suppose that's part of their CYA plan.

Thus endeth my rant for the day. :lol: :rant:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Gabes-Apg »

Doctors have such a bad habit of trying to break issues down into individual problems, and treating the symptoms, (rather than taking a wholistic approach), that they tend to fail to see the forest for the trees. They treat anemia and fatigue, and they treat osteoporosis and arthritis, but they never bother to figure out what is causing those symptoms - they're just happy as larks to be writing prescriptions to treat all those "neat" symptoms

Tex, i couldnt agree more, hence why for years i didnt have a regular doctor i relied on the assessment/treatment via Acupuncture, Naturopaths etc they will help with the symptoms, but they search for the root cause and their treatments are aimed at treating the root cause.

IMO - the 'excuses' mentioned in your post (clean society etc) is the medical profession (?Big Pharma?) excuses for not being able to accurately diagnoses and improve the health of so many patients.
Gabes Ryan

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Post by Sharaine »

Tex, great rant! There is so much misinformation out there and no one owning up to the errors of their theories just makes it all the worse as time goes on.

I got my celiac blood test results back and, of course, they were negative. Still, I avoid all gluten, as well as dairy and avenin, like the plague. When I have the money, I'll do the Enterolab or MRT testing.

Keep the rants coming. They are very informative!

Hugs, Sharaine :smile:
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Post by sarkin »

Right on, Tex! Fantastic take on that story. I totally agree, btw, that the reference to non-GI symptoms is critical - and will be the undoing of GI docs who won't get with the program, because people really can get their neurologists and endocrinologists and - gasp - GPs or PCPs to help. (My friend called her own endo about her kids' Enterolab results; he said, you know these tests are no widely accepted... but I would be very concerned about those antibodies.)

I have a few theories about why celiac is being diagnosed more...

the 0 hypothesis (which we can debunk at once) - because doctors are getting a clue? Not looking that way, unfortunately... So:

1) because folks like "gluten free girl," whose doctor refused to test her for celiac, got someone else to do the test (and yes, she was sick enough to 'pass' the blood test!), and then she told her story on the web. With recipes.

2) O Internet, how mighty and widespread are thy powers! How many people do you suppose Googled 'gluten' when Elisabeth Hasselbeck told her celebrity-celiac story?

3) Wow, it's amazing how many of those people can now find info on Enterolab testing on celiac, autism, and other sites... including this one.

4) Some of those folks who tested wildly positive for gluten intolerance, with high fecal fat scores and anti-tissue transglutaminase antibodies and double-whammy celiac genes, may 'flunk' their doctors' misguided blood tests. But since procedures generate revenue, some of 'em will have visible damage on endoscopy. YAY, everybody wins! Doctor somehow forgets to back down from the pooh-poohing they were doing to the patient's crazy theory.

Don't you love how they know that celiac is rare, and also that it's wildly underdiagnosed?

Is it possible that the incidence of celiac isn't so very different, if you factor in my mother, and Denise's mother, and your mother, and all those who went before us and left us with these genes, and who went undiagnosed and suffered any number of debilitating conditions, GI and otherwise?

What's really going to burn their bacon is when more and more people figure out that *it does not matter whether you have celiac disease or not, nor whether your doctor is on board, if you are gluten intolerant* - AND you can get well, with some luck, primarily by your own smarts and efforts. AND you can head off further sickness at the pass... using the kind of observation and diagnostic smarts that you'd wish your doctor might bring to bear on the problem.

Many years ago, a traditional Chinese medicine doc told a friend, "that's just a name your doctor calls it." (In his case, Crohn's...) Now that Dr. Fasano is backing off on the name "celiac disease," they don't even have that mighty weapon in their arsenal.

I'm guessing I'll never know whether I "have" "celiac" "disease." I'm betting, that if I do, there was a fair shot I could still be undiagnosed, and would currently 'flunk' the blood tests. I sure hope I'd not show celiac on endoscopy. But I'm not having endoscopy, and I'm sure not going back to eating gluten to get my blood tests to impress anyone.

Recommending that to anyone with gluten sensitivity is in direct conflict with the Hippocratic Oath, of course. Even if it weren't stupid and unnecessary :grin:

Love,
Sara
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Post by harma »

Tex, I really liked reading this "rant" of yours. It's not a rant it's a very clear observation of reality. I have also read on a Dutch celiac board the number of diagnosed celiacs is increasing or celiac should be more present today than lets say 50 or 100 years ago. And should be because or we eat more food with gluten or the amount of gluten in wheat is higher than 50 or 100 years ago. This is really the weakest explanation I have ever heard.

As far as I know, it's only after the second world war they have started diagnosing Celiac, until about (not sure exactly when) 20-30 years ago, the idea was if you had it, you had it from your early childhood and getting the disease at later age was impossible (same as with MC if you believe it's an older ladies disease, doctors don't look for it you are younger and/or male) so you would not be tested for it. For a while (and some doctors and patients still believe this) it was believed you could grow over it, during your teenage years.

Same story about the symptoms, first only if GI track symptoms were present, doctors would look for Celiac, and only recently (in medical terms 10 - 20 years I call recently) this has changed.

So is it strange than, they start (finally) to diagnose more people with celiac.

Seeing the development of the knowledge and views on gluten/celiac over the last, lets say over the last 60 years, first only little children, later also adults, first only GI track symptoms, later also other atypical symptoms (from depression to miscarriages), the medical world had several times adjust their vision, I can't understand why the celiac world has locked themselves in now, in their ivory tower. Where is their curiosity? That is what science is about, every couple of decades change the view fundamentally. Otherwise we would still believe the earth is flat, heredity is still a mystery and the earth is the center of the universe.

Like you, I can't explain 100% why, but I also have problems believing that we are too clean in the western wold theory and that is why we in the western world have so many immune diseases. Stories like the immune system gets bored and starts attacking his own body (as if the immune system is a separate identity where we give human characteristics too). I am like you, grew up on a farm, played in the mud and dirt, cats, goats, rabbits, dog, cows and later horses. Result: allergy is my middle name and I have an auto immune disease. Of course you have to be careful to compare an individual situation with a general theory, always exceptions, but for one or the other reason I think this theory is a poor explanation, it must be much more complicated.

Thanks for posting it.
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Post by sarkin »

Harma,

I love that you said this:
Where is their curiosity? That is what science is about,
I think about this all the time... how can someone go into research, and then become so uninterested in the topic???

Most of us here do not have the training or education to do this kind of thinking, but so many of us are truly wrestling with either the 'data' of our own diets and symptoms, or the current research we are able to find online, in a broad range of inter-connected areas. And really, not *only* because we'd like to feel better, though of course there is truly something very personal at stake for each of us.

Anyway, thanks for adding that thought to Tex's excellent rant,

Sara
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