Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Asymptomatic Children With Celiac Disease May Be Able To Eat Gluten?


SalmonNationWoman

Recommended Posts

SalmonNationWoman Newbie

Below is an article that appeared on MedScape. Not only do I not buy that early treatment should be ignored but this is article is very telling of where the medical community is being lead corporo-politically. Instead of working to improve awarenes and diagnosis, the agenda is to push gluten consumption and sell more GE'ed grains.

[PUBL] - Asymptomatic children with celiac disease may be able to eat gluten

Last Updated: 2009-04-10 12:25:52 -0400 (Reuters Health)

NEW YORK (Reuters Health) - Researchers in the Netherlands have made a startling suggestion: children with celiac disease might not need to start treatment with a gluten-free diet until they begin to develop symptoms.

The researchers, led by Dr. Maria Louisa Marin of Leiden University Medical Center, followed 32 children who were diagnosed with biopsy-proven celiac disease when they were between the ages of 2 and 4, during a mass screening effort in 1998. A total of 26 children (81%) were treated with a gluten-free diet, either immediately after screening or at some later point.

In the April issue of Pediatrics, the investigators report that at 10 years after diagnosis, "The health status improved in 66% of the treated children: in 41% by early treatment and in 25% by prevention of gluten-dependent symptoms that they developed after diagnosis."

The researchers also note that at diagnosis, the children with symptoms had low health-related quality of life scores compared to a reference population of Dutch children. By 10 years, the health-related quality of life of the children with celiac disease who adhered to the gluten-free diet was similar to that of the reference population.

Of the 6 children who continued to eat gluten, the authors write, "treatment after screening would not have improved their health status, because they had no symptoms at screening and have remained symptom-free while consuming gluten."

The investigators conclude that "in a research setting," continuing to eat gluten "seems to be an option" for asymptomatic children with celiac disease. They stop short of recommending it clinically, however. "Although our study has a relatively long follow-up, 10 years is still a short period of time to assess possible long-term complications in untreated celiac disease," they admit, "and long-term follow-up studies are needed to provide sound advice."

Pediatrics 2009;123:e582-e588.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Tim-n-VA Contributor

Did the full article address whether follow-up biopsy was done for either group? It seems a little strange that they knew from the start that these six children had intestinal damage of some sort and no noticable symptoms and the criteria to note was that they still didn't develop symptoms.

Beyond that, I'm not sure how this study supports the assertion that there is an "agenda to push gluten consumption and sell more GE'ed grains".

GFinDC Veteran

It's hard to udnerstand their thinking for me. Biopsy proven celiac means damage was seen in the intestinal villi. It seems like they are saying it is ok to damage your body as long as it doens't hurt. Sounds wacky to me.

Salax Contributor

I have to agree here. The idea that these kids have celiac, but don't put them on a gluten-free diet until they show symptoms seems like a very bad idea. That's like saying ok, I am going to eat 40 cheeseburgers a day until I see that I am getting fat and need to go on a diet. WTF? What kind of non-sense is this? If the kids have the disease don't let them eat gluten! That is common sense. If you have a disease you take care of it, don't wait until the symptoms appear, they might NEVER appear!

Grr the medical community makes me so mad. :angry:

ravenwoodglass Mentor

And what exactly are they considering symptoms? Are they only considering gut symptoms? What about the effects on the brain, on learning and mood? Are they considering things like joint and muscle pain, fatigue, weight issues (many of us explode weight wise long before the D hits and weight loss is seen), how about allergies and inflammatory responses, (many of us are catch every virus that hits for years and often are bothered by asthma before gut damage is evident).

There are so many variables and so many systems impacted in celiac that I would want to see much more complete info and research before I let my 'asymptomatic' child consume gluten and possibly be permanently impacted by things that are not considered.

rinne Apprentice
.....

The researchers, led by Dr. Maria Louisa Marin of Leiden University Medical Center, followed 32 children who were diagnosed with biopsy-proven celiac disease when they were between the ages of 2 and 4, during a mass screening effort in 1998. ....

.....

Of the 6 children who continued to eat gluten, the authors write, "treatment after screening would not have improved their health status, because they had no symptoms at screening and have remained symptom-free while consuming gluten."...

Biopsy proven would indicate damage to me, is damage not a symptom?

I would be interested in knowing the parameters of this study, did the parents of all the children know? I am just imagining the researcher talking to the parents of the children without "symptoms".

As in.....

We would like your child to participate in a study, we have found that she/he has celiac disease, we know this because we saw damage to their small intestine, now the ususal treatment would be for your child to refrain from eating all gluten products because if we see damage now then they will continue to be damaged but since they don't seem to have any of the usual problems that children with celiac have we would like to try an experiment and have them continue to eat gluten to see what other problems may arise. :o

Wouldn't the parents have to be thinking.....

Gee, this is great, my child has a disease that may cause all sorts of problems but since none of them have to do with tummy aches or D or C then sure let's experiment. :o :o

As a parent I can't imagine allowing my child to participate in such a study.

"Research." :angry:

If you look into iodine you will find that researchers have run all sorts of studies, one village in China had many children born with cretinism because they removed all iodine from the village diet.

This all takes place under some sort of scientific umbrella which apparently removes the need for human feeling, intelligence and compassion.

Tim-n-VA Contributor

The scenario that came to my mind was more of a parent saying "My child has no symptoms and the diet is too hard" and that is how they ended up with the six who continued to have gluten.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rinne Apprentice

My point would be that the damage observed in the biopsy is a symptom. Do you think parents wouldn't be concerned about the fact that there was already damage present? I do agree with you though it is possible that parents would agree, after all, we are well trained to trust doctors.

SalmonNationWoman Newbie

There are several points I'd like to make that this article makes obvious:

1. There no such thing as objective research in the 21st century. Mega corporations own our public universities, clinics and even the FDA in this country. ALL RESEARCHERS HAVE THEIR PRICE AND CAN BE BOUGHT.

2.The parameters and results are always influenced by the money trail. I haven't seen the original article as I can't find it through my current resources BUT I's lay odds the sponsors of this study are a company like Monsanto...

3. It's crystal clear that the ethics behind this study are dubiously irresponsible.

4. Conclusions and subsequent treatment protocols are blatantly flawed to promote disease and complications.

So when people on this forum scream for references remember this study. Most research isn't reliable and should be examined very carefully. Is abdicating responsibilty for YOUR HEALTHor that of your children to an "authority figure" in the medical community really worth the price?

Tim-n-VA Contributor

This is almost scary. We have an article for which the full text is available on-line. One or two sentences are taken out of context and used as evidence against the study and the entire medical research condition.

ETA: This is precisely why people ask for references.

rinne Apprentice
This is almost scary. We have an article for which the full text is available on-line. One or two sentences are taken out of context and used as evidence against the study and the entire medical research condition.

ETA: This is precisely why people ask for references.

I found the article on Medscape but didn't register, is there a link available other than registering for yet another site?

As to one or two sentences, it was a little longer than that but truly do some research on research and you will find many studies that are clearly without any concern for the participants.

Tim-n-VA Contributor

I did a google search on this snipet from the extract posted: Pediatrics 2009;123:e582-e588

Within 30 seconds I was reading the full article.

SalmonNationWoman Newbie

There's no link to the original article and after much frustration on multiple serach engines, all I get are links back to the Reuters Health News. :angry:

It's hit-and-run sensationalism disguised as medical journalism. :angry::angry: I'm sick and tired of the media jerking us around :ph34r:

happygirl Collaborator

As Tim stated - Open Original Shared Link

lizard00 Enthusiast

I just read the full article. It was very interesting. I think it is noteworthy that the purpose of the article wasn't to determine whether the children could safely ingest gluten, it was whether mass screening was effective or not. (Which is also the title of the article) There were clear ramifications for most of the children whose PARENTS didn't believe they had celiac and ALLOWED them to continue consuming gluten.

1. There no such thing as objective research in the 21st century. Mega corporations own our public universities, clinics and even the FDA in this country. ALL RESEARCHERS HAVE THEIR PRICE AND CAN BE BOUGHT.

While I have heard about the funding issues in the US related to the medical researching field, I will not go so far as to speculate about the Netherlands and their research protocols.

sbj Rookie
This is almost scary. We have an article for which the full text is available on-line. One or two sentences are taken out of context and used as evidence against the study and the entire medical research condition.

It's not almost scary, Tim, it IS scary. We have here a partial snip of a study which seems to come to reasonable conclusions: "in a research setting," continuing to eat gluten "seems to be an option" for asymptomatic children with celiac disease. They stop short of recommending it clinically, however . . . "and long-term follow-up studies are needed to provide sound advice."

Nothing too controversial for me there, and this sort of analysis might someday lead to an explanation as to why some with celiac can continue to eat gluten for their entire lives and never seem to suffer. We've read stories about this phenomenon on this very forum. What's very alarming to me is the notion that this reasonable study is used by some as evidence that there is no such thing as objective research, all researchers can be bought, and conclusions are intentionally flawed to promote disease. That's a scary and intentional misreading (IMO). If we can't look to any research at all anywhere by anyone then I guess we are all up that proverbial creek.

JNBunnie1 Community Regular
It's not almost scary, Tim, it IS scary. We have here a partial snip of a study which seems to come to reasonable conclusions: "in a research setting," continuing to eat gluten "seems to be an option" for asymptomatic children with celiac disease. They stop short of recommending it clinically, however . . . "and long-term follow-up studies are needed to provide sound advice."

Nothing too controversial for me there, and this sort of analysis might someday lead to an explanation as to why some with celiac can continue to eat gluten for their entire lives and never seem to suffer. We've read stories about this phenomenon on this very forum. What's very alarming to me is the notion that this reasonable study is used by some as evidence that there no such thing as objective research, all researchers can be bought, and conclusions are intentionally flawed to promote disease. That's a scary and intentional misreading (IMO). If we can't look to any research at all anywhere by anyone then I guess we are all up that proverbial creek.

Celiac Disease (and related research) aside, I think we've been up the creek for a while now.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.