Breaking News: Routine Screening For Celiac Disease Not Always Beneficial

[hineini]

Just got this in my inbox from MedicalNewsToday - Specifically relates to children with Downs' Syndrome.

Routine Screening For Celiac Disease Not Always Beneficial

Main Category: GastroIntestinal News

Article Date: 15 Aug 2006 - 15:00pm (PDT)

Doing more is not always better. Improving the quality of medical care does not necessarily dictate providing additional care. And in the case of children with Down syndrome, routine screening for celiac disease in children without symptoms of the disease, as recommended by at least one medical professional organization, does more harm than good according to a study by Indiana University School of Medicine researchers published in the August issue of Pediatrics.

"Although there are tests to find out whether a child with Down syndrome has celiac disease before the child develops symptoms, early treatment does not appear to improve the child's quality of life or improve outcomes from one of the long-term consequences of celiac disease, non-Hodgkin's lymphoma," said Nancy Swigonski, M.D., M.P.H., the study's first author and an associate professor of pediatrics at the Indiana University School of Medicine and affiliated scientist of the Regenstrief Institute, Inc.

Celiac disease is a genetic autoimmune disorder that damages the small intestine and interferes with absorption of nutrients from food. Individuals with celiac disease cannot tolerate gluten, a protein found in wheat, rye, and barley. Untreated celiac disease is thought to increase the risk of intestinal lymphoma.

Using decision analysis, a tool for weighing alternative courses of action in terms of their potential benefits and liabilities, the researchers looked at the potential benefit of preventing gastrointestinal malignancy by detecting celiac disease in children without symptoms of the disease and weighed the benefit against the cost and quality of life issues associated with screening and treatment of celiac disease. They also calculated the number of asymptomatic children with Down syndrome who needed to be screened to prevent a single case of lymphoma.

The researchers report that routine screening of all children with Down syndrome would cost $500,000 per life-year gained and that screening all asymptomatic children with Down syndrome for celiac disease would cost almost $5 million to prevent a single case of lymphoma.

And the financial cost of routine screening those without symptoms of celiac disease is far from the only issue. Even small decrements in the quality of a child's life caused by dietary restrictions more than off-set the trivial and unproven reduction in the risk of lymphoma.

"As a pediatrician, I know the treatment of celiac disease places a burden on the patient and on the family. The strict gluten-free dietary constraints (the recommended treatment) are not only costly, but more importantly, they make the child stand out when most patients and families are working very hard to integrate the child into society. We have many tools, tests and procedures that can be done but we need to use evidence-based medicine and family-centered care to make effective decisions for the assessment and care of children." said Dr. Swigonski.

An accompanying commentary written by two Brown University physicians noted, "This is an example of where doing more is not better - despite good intentions harm can be done and resources may be wasted."

###

While rejecting routine screening for celiac disease in children without symptoms, the authors of the study do call for a low threshold for testing for celiac disease in children and adults with Down syndrome who have symptoms of celiac disease.

Co-authors of the study are Heather Kuhlenschmidt, M.D., Marilyn J. Bull, M.D., Mark R. Corkins, M.D., and Stephen M. Downs, M.D., M.S., all of the Department of Pediatrics of the Indiana University School of Medicine. Dr. Downs, who heads the Pediatrics Department's Division of Child Health Services Research and is director of general and community pediatrics, is also a Regenstrief Institute, Inc. affiliated scientist.

"Often medical interventions seem intuitively good on the surface, but careful analysis of the evidence and the trade-offs patients face sometimes uncovers unintended harms or unreasonable costs," according to Dr. Downs, senior author of the study.

Contact: Cindy Fox Aisen

Indiana University

[rinne]

I wonder if any of these people doing the study have Celiac.

[trents]

Hum. I have read that in Italy they due routine screening of all chidren entering school. I wonder how they do it? By symptomology or by bloodwork. Surely they wouldn't do it if it cost $500,000 per child or whatever.

Steve

[Fiddle-Faddle]

This study sounds skewed to me--they already had their minds made up. Notice they didn't say HOW MANY cases of lymphoma might be prevented, only how much it would cost to prevent ONE case. Hmmm.

[psawyer]

And, they considered only lymphoma. There are many, many other diseases and conditions associated with untreated celiac to consider. What about diabetes, lupus, rheumatoid arthritis, just to name a few of them?

[natalunia]

I really don't find following the gluten free diet more costly, just less convenient. We can't go buy ready to eat bread and pasta as cheap as we used to, and we are limited in our fast food choices. A doctor saying he discourages them from going gluten free dur to costs or ostracizing a kid is being irresponsible. NEWSFLASH for the Drs.: It's not that hard anymore!!!!

[queenofhearts]

And it would only get EASIER to be on the diet if more of the people who need it get diagnosed! Sometimes I wonder about medical "science"...

Leah

[marcy]

Hi,

My name is Marcy and I am new to the site. My daughter is 4 and was dx with celiac disease via blood draw and biopsy. It has been very expensive, and emotional as we are eater outers as my other children call it. My daughter also has DS. This was a very important article for me to read and I really appreciate this site for posting it. One of my t houghts while reading the article was the missing point of aside from the cancer it is healther for our children w/ds. It almost sounded as if who cares that child has DS. My daughter does not and did not have symptoms. I am scared to death that I am cross contaminating her. I will tell you the DS is not what will set her apart. It is the celiac disease! That is why I am so sad....... THe DS is so secondary to this. Again thank you for posting the article! I am grateful. Marcy

[Guest nini]

I really don't find following the gluten free diet more costly, just less convenient. We can't go buy ready to eat bread and pasta as cheap as we used to, and we are limited in our fast food choices. A doctor saying he discourages them from going gluten free dur to costs or ostracizing a kid is being irresponsible. NEWSFLASH for the Drs.: It's not that hard anymore!!!!

Yeah, what you said! What was that Dr. smokin? My gawd, is it 1984 here??? Ugh... we need to find that Dr.s e-mail addy and blast her/him with a reality check.

[tarnalberry]

I am horrified at the faulty logic. "Well, smoking doesn't significantly increase the cost of cosmetic surgery for age lines, so there's no reason to advise people to stop smoking." Uh... what about the *numerous* other deleterious effects of untreated celiac disease? Those are non-trivial factors in calculating the cost-benefit ratio for testing. At the least, you need to account for the top... what? 67%, 75% of cost contributors to health care costs from untreated celiac. Lymphoma alone doesn't account for it. (Not to mention that I'm certain that the main health care cost contributors for down syndome patients are slightly different than for patients without down syndrom.)

[Ursa Major]

Don't they care about the children's health at all? Don't they know that somebody with celiac disease usually feels run down, has tummy aches, can't think straight, has gas, bloating, diarrhea or constipation etc. Is it that they feel that kids with Down syndrome aren't worth spending some money on, to improve their health?

And it's true, in Italy every single child gets tested for celiac disease before they start school, not just kids with DS. How do they manage to afford it? Simple, the kids that are identified to have celiac disease at the age of six, will cost an awful lot less money with numerous illnesses later on.

[mle-ii]

Wow, talk about heads up their... oh wait, heads in the sand.

[Fiddle-Faddle]

Let's see, we are not getting fast food any more, we don't buy any prepared mixes or powdered mac-and-cheese, we are eating far fewer breads, less pasta, far more fresh fruits and vegetables, the only cookies or cake we eat are the ones I bake from scratch, and we hardly ever go out to eat.

So we are eating far healthier and spending LESS money on food. Apparently, the doctors feel it is important to avoid this.

[debmidge]

the report is very irresponsible. it's typical medical talk to dissuade patients from having the best care because THEY don't know the facts about the disease.

[eKatherine]

That's just amazing. Would they recommend diagnosis and treatment after the kid starts having diarrhea every day and malabsorption, or is that also less important than the quality of living you get from eating pizza?

My food budget is less, too, but that's due to that fact that I can't eat dairy, and I was eating a lot of imported cheese before.

[LKelly8]

It's bean-counter science. Applying cold cost/benefit analysis to human life.

<shudder>

[gfp]

Don't they care about the children's health at all?

Childrens health has nothing to do with it.... $$$$$$$$$

Don't they know that somebody with celiac disease usually feels run down, has tummy aches, can't think straight, has gas, bloating, diarrhea or constipation etc. Is it that they feel that kids with Down syndrome aren't worth spending some money on, to improve their health?

No its because they don't care. Yes they are worth spending money on if it cannot be helped or if they cannot come up with a convincing reason NOT to.

And it's true, in Italy every single child gets tested for celiac disease before they start school, not just kids with DS. How do they manage to afford it? Simple, the kids that are identified to have celiac disease at the age of six,

will cost an awful lot less money with numerous illnesses later on.

It is also largely to do with the constant political maneovering over biopsy and blood testing.

No country on earth (excepting Saudi and a few states that don't have legal citizen status for families living there for generations and a very high GDP:pop) could ever afford routine biopsy screening.

So we are eating far healthier and spending LESS money on food. Apparently, the doctors feel it is important to avoid this. blink.gif

Senaca is attributed with Is fecit, cui prodest. from the Medea. but it has been along much longer.

For those without a knowedge of latin, "he that benefits is he that did it". although fans of Senaca will note the slight deviation here (Senaca having the term in context) but the principle was also used by Giaus Julius in his defense against the senate and predates the epoch almost to the two tablets.

In other words if you want to know why look at who stands to gain not who stands to loose.

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".

I am horrified at the faulty logic. "Well, smoking doesn't significantly increase the cost of cosmetic surgery for age lines, so there's no reason to advise people to stop smoking."

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!

And it would only get EASIER to be on the diet if more of the people who need it get diagnosed! Sometimes I wonder about medical "science"...

cui prodest?

Or perhaps who is presently gaining?

[penguin]

What's also disgusting is that they aren't denying that a lot of these kids have celiac disease, they are just reccomending that it go undiagnosed to spare families the trouble. Good grief.

[gfp]

What's also disgusting is that they aren't denying that a lot of these kids have celiac disease, they are just reccomending that it go undiagnosed to spare families the trouble. Good grief.

I doubt it.... they are justifying their financial case by a smoke screen.

And the financial cost of routine screening those without symptoms of celiac disease is far from the only issue.

Don't believe a word of it.... this is an afterthought.

(the recommended treatment) are not only costly, but more importantly, they make the child stand out when most patients and families are working very hard to integrate the child into society.

Firstly several pepole here have already busted the more costly part to diet anyway BUT "being different" because they have celiac disease is probably the last being different that a family has to struggle against for a DS child!

I'm sorry but "I can't eat that" and "I've just pooped myself" are two different levels...

LKelley8 has it spot on

It's bean-counter science. Applying cold cost/benefit analysis to human life.

<shudder> unsure.gif

Bean counter science is not science ... it is manipulating results based on manufactured tests to take money away from someone.

[Nancym]

I got the feeling they're were almost saying it isn't worthwhile to prevent all the downstream issues with celiac disease because they're not normal people and they don't really need all that good of a quality of life anyway. Yikes! That article made me feel nasty.

[floridanative]

This study is very disturbing. I'd love to know why there is such a backlash in the US to admitting this is an issue and needs to be dealt with. I for one, do not think the number is going to stay at 1 in 100 (have Celiac)and that is probably suspected by the National Wheat Assoc. Besides the phama companies, they stand to lose a lot of money if everyone who should avoid wheat really does so. Many think that we are just too small a group to matter but the reality is that we still do not know exactly how large or small we are, just what the current statistics are. As you all know, those keep changing every year. Those show more people have Celaic, not fewer each year.

Remember the whole tobacco scandal? I know this is much different but you know that the tobacco companies had to turn to pushing their product on other countries when the US got with the program and the down trend in smoking started. Now smokers are sort of treated like lepers in a way and I sort of feel sorry for them as I pass through their toxic fumes to enter a client's building for meetings. The truth is that we are only in the beginning stages of really finding out about Celiac and how much of the population has it. What if in five years they say 1 in 50 people have Celiac? Do you think we'll be a force to be reckoned with then? Maybe, maybe not - I'm not an economist. I'm just certain that some entities have a vested interest in keeping the facts about Celiac from getting out. Now I guess if a pill for it hits the market in 2008, well the public will be told that they all may have Celiac - lol!

[chewymom]

As a mom to a son with Down syndrome, I was especially interested in this article. All I can say is "WHAT A MAROON!!!!" to quote Bugs Bunny. Sheesh--like the only reason to test for celiac is to decrease the risk of cancer? And quality of life is determined by the ability to continue to eat gluten?? I hope nobody who has a child with Down syndrome pays any attention to this!!!

[plantime]

[hineini]

Is it that they feel that kids with Down syndrome aren't worth spending some money on, to improve their health?

That's EXACTLY my response to this article (which I hope people know I wasn't sharing because I agree with it, but rather just to share something I cam across). I think that people with disabilities' wellbeing is never as important to the medical establishment.

I have to be honest, I think there's got to be some financial interests at play here... Such as the wheat lobby. We have some seriously powerful agricultural lobbies in this country which will do anything possible to avoid their product being stigmatized.

[tarnalberry]

That's EXACTLY my response to this article (which I hope people know I wasn't sharing because I agree with it, but rather just to share something I cam across). I think that people with disabilities' wellbeing is never as important to the medical establishment.

I have to be honest, I think there's got to be some financial interests at play here... Such as the wheat lobby. We have some seriously powerful agricultural lobbies in this country which will do anything possible to avoid their product being stigmatized.

I'm generally not one to believe in conspiracy theories, so I don't think there's a wheat lobby behind this - the wheat lobby is more interested in spending their money getting subsidies out of Congress than affecting the fairly small bottom line involved in this study. I do think, however, that this study is founded in utter ignorance of Celiac Disease, it's true ramifications (quality of life living with it) and the ramifications of the diet (financial, emotional, and physical).