[Cath4k]

I am pretty new here, so this may have already been linked at some point. I found this article during a search for other information.

Unexpected Mortality Increase Found in Celiac Disease:

http://www.gastro.org/user-assets/Document.../GIHEP_0807.pdf

Cathy

ETA: The article is on page 10.

[ENF]

That is an excellent article - they bring up many important points that have not been known, or properly addressed. Besides the higher mortality rates in people who are diagnosed with celiac as children, it explains a great deal about how gluten affects the brain, and subsequently behavior. I could relate to much of it and I'm sure that many other people with Celiac or gluten sensitivity can as well.

Maybe it should be listed in Publications and Publicity section, or wherever it will get more readership and responses.

[teemaree]

I am trying to find this story... but can't find it on the link you have given?

[FranDaMan]

The original link is quite old but I poked around and did indeed find thearticle on page 10 here:


http://www.gastro.org/user-assets/Document.../GIHEP_0807.pdf

[sbj]

This is really interesting. This bit jumped out at me:

Just as poor adherence is linked with psychiatric pathology, so too is good adherence— . . “The actual process of labeling a child with celiac disease and requiring them to adhere to a gluten-free diet may be, in some way, detrimental,” they wrote. “As treatments go, taking a gluten-free diet must rank as one of the most intrusive for a child— . . . “We wondered what were the psychological effects on a child of being brought up with a condition whose treatment has such a profound effect on daily life— . . .“a child doesn’t necessarily have the developmental capacities to cope the way an adult might.” . . . “Children report feeling different and embarrassed, left out, and angry,” . . . “It can be heart-breaking for a child to be unable to eat gluten-containing treats at special occasions, such as birthdays or holidays.”

This not only makes me feel really sorry for children who have to cope with celiac disease, but it makes me wonder about putting a child who does not have celiac disease on the diet for other reasons?

[Roda]

sbj, on Jan 28 2009, 01:35 PM, said:

This is really interesting. This bit jumped out at me:

Just as poor adherence is linked with psychiatric pathology, so too is good adherence— . . “The actual process of labeling a child with celiac disease and requiring them to adhere to a gluten-free diet may be, in some way, detrimental,” they wrote. “As treatments go, taking a gluten-free diet must rank as one of the most intrusive for a child— . . . “We wondered what were the psychological effects on a child of being brought up with a condition whose treatment has such a profound effect on daily life— . . .“a child doesn’t necessarily have the developmental capacities to cope the way an adult might.” . . . “Children report feeling different and embarrassed, left out, and angry,” . . . “It can be heart-breaking for a child to be unable to eat gluten-containing treats at special occasions, such as birthdays or holidays.”

This not only makes me feel really sorry for children who have to cope with celiac disease, but it makes me wonder about putting a child who does not have celiac disease on the diet for other reasons?

My child is not celiac but am a little suspicious of intolerance. I plan on inquiring more when he sees his allergist/immunologist. I think that the issue of children having problems coping with the diet is a very individual thing. While some may be bothered some may not. I am gluten free and the rest of the family, at least at meal time (I do the cooking) are gluten free. They still eat cereal for breakfast, wheat bread, and regular pasta. My boys' are not gluten free at school. My oldest is in second grade and has always been a very empathetic child since he was a very little toddler. He can just sense things about people. He his very protective about me and even asks if I can eat something or is first to say to others that my mom can't eat that she has celiac disease. I always did bake and cook all of our meals at home so adjusting to a few different ingedrients was no big deal. If at some point he goes gluten free I don't think that it would bother him at all. He even said one evening "I want to be gluten free." Mind you he is not aware of all the fine details, but I think he would adjust just fine. I have always told him that differences can be a good thing.

[sbj]

Roda, on Jan 28 2009, 11:30 AM, said:

I think that the issue of children having problems coping with the diet is a very individual thing. While some may be bothered some may not. . . . I have always told him that differences can be a good thing.

I totally agree with you.

[Roda]

sbj, on Jan 28 2009, 02:51 PM, said:

I totally agree with you.

Now if I were talking about my four year old I don't think it would be as easy. He is the pasta/bread boy and very bull headed.

[Fiddle-Faddle]

sbj, on Jan 28 2009, 01:35 PM, said:

This is really interesting. This bit jumped out at me:

Just as poor adherence is linked with psychiatric pathology, so too is good adherence— . . “The actual process of labeling a child with celiac disease and requiring them to adhere to a gluten-free diet may be, in some way, detrimental,” they wrote. “As treatments go, taking a gluten-free diet must rank as one of the most intrusive for a child— . . . “We wondered what were the psychological effects on a child of being brought up with a condition whose treatment has such a profound effect on daily life— . . .“a child doesn’t necessarily have the developmental capacities to cope the way an adult might.” . . . “Children report feeling different and embarrassed, left out, and angry,” . . . “It can be heart-breaking for a child to be unable to eat gluten-containing treats at special occasions, such as birthdays or holidays.”

This not only makes me feel really sorry for children who have to cope with celiac disease, but it makes me wonder about putting a child who does not have celiac disease on the diet for other reasons?

I think it depends on how it is handled by the parent, and also on how severe the child's reactions to gluten are.

My kids know that I will make them GOOD gluten-free versions of whatever they would like--birthday cake, pizza, brownies, whatever. It's not the least bit heart-breaking!

They all remember the tummy aches. The two oldest do not even want to cheat. The youngest occasionally asks me for permission to cheat, but does not cheat at friends' houses, according to their parents. The youngest is the only one who did NOT have severe symptoms.

I'm sorry, but I really think their conclusions are total bunk. What is more heartbreaking to a child, eating a gluteny cupcake with chocolate icing and ending up in the ER, or eating a gluten-free cupcake with chocolate icing and remaining healthy? Children totally understand this,especially if they've ever ended up in the ER for severe intestinal problems.

And with so many children with food allergies these days, it's not like they are really "different" from the other children anyway. Preschools don't even let kids bring in peanut butter sandwiches any more, and cafeterias offer soy milk. Gluten-free will be next.

This article was obviously written either by someone who has never had to live gluten-free, or by someone who didn't know how to do it well.

[sbj]

Fiddle-Faddle, on Jan 28 2009, 01:48 PM, said:

This article was obviously written either by someone who has never had to live gluten-free, or by someone who didn't know how to do it well.

Remember what you said about making assumptions?

To the matter, I think the authors point out that no conclusions can be made - they are just throwing theories around. But it does seem to me that it can be hard for kiddies in some instances, and I can understand that the teen years might be particularly difficult.

I think this is best looked at as food for thought. Not every one is a great cook!

[Mother of Jibril]

I thought the main point of the article... about kids with celiac (or any chronic disorder) being more prone to risk-taking behavior as teenagers... was also very interesting. To me, that makes sense. Kids who are really sheltered can get restless and rebellious. But... I think there are ways to give them other options and freedoms.

For example, my dad would take me to the library and literally let me check out anything I wanted. He would glance over the books when I brought them home (sometimes even read them), but he made a point of not questioning my choices. In 8th grade I went to a sleep-away science camp for three weeks (with very little adult supervision!). The summer before I graduated from high school I went to Germany for five weeks as an exchange student. A lot of people asked my parents if they were nervous that something bad could happen while I was so far away. Their response was, "Not really... Europe is pretty safe and our daughter has a good head on her shoulders."

In little ways, my parents inspired me with a lot of confidence. I know you really have to keep a close eye on small children with celiac disease (especially when they're still at the stage of putting everything in their mouth)... but I think it's good to be conscious about letting kids take responsibility as they get older. Let them make a few mistakes when you can still help them recover from the negative consequences! I know I'm going to keep this in mind with my son, who has multiple problems with food intolerance.