Breaking News: Routine Screening For Celiac Disease Not Always Beneficial

[ravenwoodglass]

My first thought was who funded these studies (this study)? Is it the NIH pushing for screening that they are disagreeing with? I noticed they mentioned one group that was recommending the screen like it was a bunch of folks playing poker in the back room that thought up the idea. $500,000 to diagnose, excuse me how bout just recommending a dietary trial for those that are symptomatic and doing a gene test for those that aren't. Although I guess if you ignore the posibility it could easily reach that much after symptoms delvelop- and doctors test for everything but. These people need an education about celiac disease before they write this sort of irresponsible piece.

[oceangirl]

My first thought was who funded these studies (this study)? Is it the NIH pushing for screening that they are disagreeing with? I noticed they mentioned one group that was recommending the screen like it was a bunch of folks playing poker in the back room that thought up the idea. $500,000 to diagnose, excuse me how bout just recommending a dietary trial for those that are symptomatic and doing a gene test for those that aren't. Although I guess if you ignore the posibility it could easily reach that much after symptoms delvelop- and doctors test for everything but. These people need an education about celiac disease before they write this sort of irresponsible piece.

I work with kids with Down Syndrome- this article made me sick. These people have taught me so much, but, according to this study, don't deserve the quality of life every human deserves? Yes, let's bombard them with our outrage.

lisa

[eKatherine]

I seriously doubt there is a wheat lobby that would be involved in this. More likely the drug lobby would be involved, as the money they make from treating symptoms dwarfs what farmers would lose from a few more people changing their diet. Besides, farmers can always change the crops they grow to respond to demand, while treating celiac with diet will reduce the drugs prescribed.

[gfp]

I seriously doubt there is a wheat lobby that would be involved in this. More likely the drug lobby would be involved, as the money they make from treating symptoms dwarfs what farmers would lose from a few more people changing their diet.

This is perhaps not the point.

The asbestos industry spent a lot of money to keep making asbestos and sayingit was safe.

I grew up very close to this

Open Original Shared Link

Asbestos related illness was still seen as something very rare even after it was known that it could and did cause cancer it was still not banned.

I don't think the wheat lobby are worried about "a few more people changing their diet" as much as a complete change of the way people view wheat. Someone brought up degrees of seperation on another thread, this is I believe they reason.

1:5000 means most people will never know anyone with celiac disease ... they will of course meet people with it but they are unlikely to be affected directly .. most people will not know of it and most of those who do it will be a friend of a friend...

1:750 ... At some point then everyone will come into direct contact with a celiac... at some point they will eat with one but can still forget about it before the next time they meet one.

1:100 ... Everyone knows multiple people and so everyone knows what celiac disease is. People not directly affected by a close friend or family member will still go to school, work or socialise with several celiacs.

Here is a very biassed article but its worth reading Open Original Shared Link

particualrly

The U.S. has pushed for changes at the World Trade Organization (WTO) that will significantly affect western Canadian farmers.

So Canada went to the WTO ....

What if the US justified trade sanctions by saying it was protecting its population ?

This is a bit political but I want to post it because it shows what the various wheat lobbies believe of each other!

Open Original Shared Link

That last task had the codename Project Hunta. It brought together AWB sales teams already back in the field in Iraq and AWB personnel placed by the Australian Government in key positions in the Coalition Provisional Authority. One of these was the gun-toting Michael Long, who used his position at the Ministry of Trade to save the career of an AWB friend, Yusef Abdul Rahman, the former head of the Iraq Grains Board.

What I am quoting is what different countries wheat lobbies are accusing each other of. I don't want to get into discussing Iraq... I just want to post the types of things the wheat lobbies beleive each other capable of... if its true or not they certainly think it is and if they think another wheat lobby would do this might that not be because they would too?

Besides, farmers can always change the crops they grow to respond to demand, while treating celiac with diet will reduce the drugs prescribed.

Not really, you can't grow rice on a prairy. You can switch for rye or barley ....

But I don't think this is really the major point:

Bread and wheat are marketed as wholesome foods. We might know differently but the general public doesn't.

Here is a totally weird lobby group Open Original Shared Link

Why is the university of phoenix declaring $120,000 lobbying for wheat?

Who are the Apollo group Open Original Shared Link ??

Indeed we find from the US wheat assoc that supply and demand are actually critical. (pdf)

Open Original Shared Link

I'm generally not one to believe in conspiracy theories

I'm not exactly sure this is a conspriracy theory.... at least not like UFO's or tin hats.

This is how the word does business.

Just a trace on one apsect shows this Apollo group which I found randomly ... who is paying the admittedly small $120,000 a year to lobby for wheat?

Lobbying is huge business there are 4,799 registered lobbying companies in the US and 12,772 people who define their job as lobbyists.

These companies do not work for single clients, they represent mutliple clients and look for synergy.

Of these companies it would seem unlikely that the ones used by petroleum companies and those used by automotive manufacturers are not cooperating the lobby. It does not take much more to think perhaps those representing the drug companies and agribusiness (as it is classified in lobbyist terms) are not one and the same with some common goals and interests.

I don't really see this as a conspiracy this is just business as usual....

[chewymom]

Downs syndrome kids are an easy target... firstly you can take life expectancy and then only address issues which are life expectancy controlled. Secondly you can "interview" the downs syndome kids and ask them if they want an operation on the offchance they have a very rare disease that might affect them when they are older.

You can ask about what involves quality of life for a downs syndrome kid and get answers like "being near mommy".

Taken to the endpoint... Downs syndrome kids have a short life expectancy. Smoking related illnesses statistically affect older people. Many people profess to enjopying smoking and count it as a quality of life. So all Downs syndrome kids should be encouraged to smoke?

I think this illustrates how deranged the paper is!

cui prodest?

Or perhaps who is presently gaining?

Actually, if you are talking about kids, ask ANY kid about quality of life and he will say, "being near Mommy." Ask a teenager or a young adult with Down syndrome, and you will get a variety of answers, but "being near Mommy" is not likely to be one of them. They might learn slower than the general population, but they are not permanent children. I know that if you asked my 15-year-old son about his quality of life, he would probably answer with some of his life goals. These include being in a rock band, attending Auburn University, and living on his own, just to name a few. All goals very much worth living for, for any person

Also, a person with Down syndrome has almost the same life expectancy as anyone. The numbers that show a short life-span are flawed--they include very old data from when people with Down syndrome were placed in institutions. They also do not factor in the higher incidence of early deaths due to heart problems. (Forty percent of babies with Down syndrome are born with a heart defect.)

[Fiddle-Faddle]

My understanding is that, with early intervention and a little extra help, children with Down's are capable of nearly anything!

There is a little girl with Down's in my son's elementary school. She takes mostly regulare classes, she goes to a smaller classroom for some classes (but learns the same material and does the same homework as the regular class), and plays violin in the school string orchestra. She has in-school speech therapy to help her learn to speak more clearly with the tongue differences that are characteristic of Down's.

I think when she grows up, she will be able to be anything she wants!

[gfp]

Actually, if you are talking about kids, ask ANY kid about quality of life and he will say, "being near Mommy." Ask a teenager or a young adult with Down syndrome, and you will get a variety of answers, but "being near Mommy" is not likely to be one of them. They might learn slower than the general population, but they are not permanent children. I know that if you asked my 15-year-old son about his quality of life, he would probably answer with some of his life goals. These include being in a rock band, attending Auburn University, and living on his own, just to name a few. All goals very much worth living for, for any person

Also, a person with Down syndrome has almost the same life expectancy as anyone. The numbers that show a short life-span are flawed--they include very old data from when people with Down syndrome were placed in institutions. They also do not factor in the higher incidence of early deaths due to heart problems. (Forty percent of babies with Down syndrome are born with a heart defect.)

This is largely the point....

They also do not factor in the higher incidence of early deaths due to heart problems.

We don't know what figures this study used but we do know they were talking costs per year of life saved.

I would hazard a guess that they choose the worst possible figures to make the case....

Actually, if you are talking about kids, ask ANY kid about quality of life and he will say, "being near Mommy."

Yes your correct but then that's what Im trying to say.....

I don't think this is isolated as much as a cheap shot. Actually I think its a pretty sick cheap shot.

and the reason I said "be near mommy" is the article is specifically about screening children ...

They might learn slower than the general population, but they are not permanent children.

and yet they are being classed as "well if they have celiac then why bother messing up their life.....just let them eat gluten and be ill"

What I don't understand at all is why not diagnosing anyone so they don't need to go on a special diet is justified... you can replace DS kids with hispanic kids and say on average hispanics have lower income than average... (I don't know if this is true, its just a example) so there is no point subjecting them to a expensive gluten-free diet... you can say African Americans live shorter lives than their caucasian counter parts (this is true) so we shouldn't bother about them either....

The point is (I think) the whole arguament is fundamentally flawed... but it thinks gets away to a certain extent just because its targetting DS kids....

[happygirl]

chewymom-I graduated from Auburn last summer with a master's degree. I love your family picture. Does your family live in Alabama?

War Eagle!

[eKatherine]

My understanding is that, with early intervention and a little extra help, children with Down's are capable of nearly anything!

There is a little girl with Down's in my son's elementary school. She takes mostly regulare classes, she goes to a smaller classroom for some classes (but learns the same material and does the same homework as the regular class), and plays violin in the school string orchestra. She has in-school speech therapy to help her learn to speak more clearly with the tongue differences that are characteristic of Down's.

I think when she grows up, she will be able to be anything she wants!

Unfortunately, the situation is much more complex than that. I substitute in all grades and classes in public schools. Some Down's children are "high achievers", but they still need regular help - perhaps half regular classes and half special classes in a resource room. Others are in high school still learning how to dress themselves and use utensils properly. It is because they are always dependent in some way that people like these feel they can make blanket decisions about quality of life for them.

[gfp]

Unfortunately, the situation is much more complex than that. I substitute in all grades and classes in public schools. Some Down's children are "high achievers", but they still need regular help - perhaps half regular classes and half special classes in a resource room. Others are in high school still learning how to dress themselves and use utensils properly. It is because they are always dependent in some way that people like these feel they can make blanket decisions about quality of life for them.

As I mentioned earlier, I really don't think this has anything to do with DS kids, except being an easy target...

Get ready for this to be used in a more general approach....

ADHD? Asperger's?

and here it starts already.

Size is trying to conform with original article see above... bold is mine.

Open Original Shared Link

August 16. 2006 6:59AM

Children not helped by celiac screening

OUR HEALTH: TREATMENT WATCH

Doing more is not always doing better, researchers at Indiana University School of Medicine say.

Their study found that screening children with Down syndrome routinely for celiac disease does more harm than good.

Tests are capable of finding celiac disease -- an autoimmune reaction to gluten -- before symptoms occur.

But the study found that starting treatment before onset of symptoms is not helpful, the IU researchers said.

Because of that, they conclude that there's no reason to screen for the disease.

Gluten is a protein found in many grain products. Celiac disease harms the intestines and increases the risk of lymphoma, a form of cancer.

The IU study appears in the current issue of Pediatrics.

So... they have already inferred that though they mention the study was on DS children they do not mention that after when they say....

"But the study found that starting treatment before onset of symptoms is not helpful"

"Because of that, they conclude that there's no reason to screen for the disease."

and they manage to miss the point that there is more to celiac disease than lymphoma.

[ravenwoodglass]

"But the study found that starting treatment before onset of symptoms is not helpful"

"Because of that, they conclude that there's no reason to screen for the disease."

and they manage to miss the point that there is more to celiac disease than lymphoma.

How many of our children, not just ones with DS are suffering the mental issues of celiac for years with the 'brain'fog' impairing their ability to learn and causing emotional upheavel? I worked a substitute teacher in special ed and regular classes for years and could watch the reactions many 'normal' kids had from their gluten filled lunches. Gluten impairs brain function long before it effects the gut. To me that alone is reason enough to get our children, ALL children tested. Waiting until they have started having gut symptoms is much too late for many.

[gfp]

And the madness continues:

Celiac tests in Down children may fail

INDIANAPOLIS, IN, United States (UPI) -- Researchers at the Indiana University School of Medicine say children with Down syndrome may still develop celiac disease even if routinely tested.

Really, testing doesn't stop damage?

I thought we just had to get tested and the disease went away?

Of course they are going to develop it.... especially now that its decided testing before the damage is ... "ineffective" ?

Please take note: This article has a talk-back option!

Perhaps some of you would care to comment?

[Fiddle-Faddle]

gfp, what article are you quoting? Can you provide a link?

[gfp]

gfp, what article are you quoting? Can you provide a link?

ooops....

Open Original Shared Link

Sorry this stuff gets me hopping mad. I pretty much knew how this would spread....

Its like good news travels fast..bad news faster still. but "medical research gets cited, medical research saving medicare money gets mis-cited often".

and sooner or later you will be sat oppostite someone and they will be saying how they read that treating DS kids is a waste of money.... or in this case testing is a waste of money because it doesn't stop them developing symptoms... and the idiot is unlikely to know what celiac disease is or actually know a DS person or .....

If the article had instead said that "Testing is not enough, DS kids should be tested frequently and state school provide them a special diet" then it would be mis-cited differently because this costs money.

[Fiddle-Faddle]

You're right, that is incredible--and horrible.

So what can we do to counteract this idiocy?

[gfp]

You're right, that is incredible--and horrible.

So what can we do to counteract this idiocy?

We could start by using the talkback button?

but the problem is overall ...

[chewymom]

chewymom-I graduated from Auburn last summer with a master's degree. I love your family picture. Does your family live in Alabama?

War Eagle!

We actually do live in Alabama, and we like Auburn, but those are Clemson shirts--LOL! My in-laws live in Clemson and got the whole family together and bought shirts for all 25 of us--we did a huge family pic, and then more pictures of each famly group!