| View previous topic :: View next topic |
| Author |
Message |
ostrich
Joined: 30 Mar 2006
Posts: 5114
Location: Nebraska
|
 Posted: Fri Feb 20, 2009 1:23 pm Post subject: |
 |
|
| cruelshoes wrote: | | I don't know how it is in all children's hospitals, but when my son had his endoscopy, they gave him nitrous oxide to put him to sleep before doing his IV. He didn't even have to feel the stick. He doesn't remember anything about the procedure at all. |
They gave me some purple liquid to drink before taking out my gall bladder. All I remember is the taste of grape, then waking up in the recovery room. And I was 16 year old.  I'm certain they'd to something to take the edge off before putting your child under.
_________________
Ostrich :>--O==={
Time falls away, but these small hours
These little wonders still remain |
|
| Back to top |
|
 |
sweetea
Joined: 18 Nov 2008
Posts: 180
Location: Midwest
|
| Posted: Fri Feb 20, 2009 2:45 pm Post subject: |
|
|
I'm not so sure I'd subject my kids to a scope.
If it came up negative I wouldn't want it on their medical record with the way things are going with healthcare now a days.
I'd put them on a GF diet and if they improve I'd consider them GF for life. |
|
| Back to top |
|
|
aklap
Joined: 02 Oct 2004
Posts: 10974
Location: WI, USA
|
| Posted: Fri Feb 20, 2009 3:06 pm Post subject: |
|
|
| sweetea wrote: | I'm not so sure I'd subject my kids to a scope.
If it came up negative I wouldn't want it on their medical record with the way things are going with healthcare now a days.
I'd put them on a GF diet and if they improve I'd consider them GF for life. |
You wouldn't care if an official dx would be able to help them in school? ie a 504 plan?
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
|
| Back to top |
|
|
cruelshoes
Joined: 23 Sep 2005
Posts: 3561
Location: Washington State
|
| Posted: Fri Feb 20, 2009 4:14 pm Post subject: |
|
|
| sweetea wrote: | If it came up negative I wouldn't want it on their medical record with the way things are going with healthcare now a days.
|
Just curious - Why would it matter if there was a negative test result in their chart? There is no medication to be prescribed, no treatment other than the GF diet. If the test results were negative, they would not need the things a diagnosis would provide - ie. a 504 plan, compliance to the GF diet, etc.
Don't misunderstand - I know that you can have negative test results and still need the GF diet. When you are outside of the doctor's office, you can choose to feed them gluten or not, regardless of the test results. I don't see what would be the downside to having a negative test results in the medical chart.
_________________
-Colleen
Where are we going, and what am I doing in this handcart?
Last edited by cruelshoes on Fri Feb 20, 2009 4:22 pm; edited 1 time in total |
|
| Back to top |
|
|
sweetea
Joined: 18 Nov 2008
Posts: 180
Location: Midwest
|
| Posted: Fri Feb 20, 2009 4:20 pm Post subject: |
|
|
Oh I'm sorry! I meant to say "positive"!
And no, I really would not want a positive diagnosis on my chart or my kids....even for the 504 plan. But that would be my take on it...
I'm all for homeschooling anyway!  |
|
| Back to top |
|
|
janiekay
Joined: 28 Feb 2009
Posts: 5
|
| Posted: Sun Mar 01, 2009 1:28 pm Post subject: negative test blunted villi |
|
|
I'm wondering about the third option here of genetic testing for the two genes present in people with celiac.
I've seemingly gone through the process backwards: scope and then blood panel. Scope showed blunting, blood work was negative. I am trying to figure out how the 20% of serionegative people get confirmed with CD. I assume it's if they improve on a gf diet. But what about people without symptoms? Are serionegative people confirmed with genetic testing? I understand it is an expensive test, but it seems the most common sense one to have, especially when trying to determine if children might have the issue.
I imagine that I could improve on GF because I am cutting out so many other additives and foods that contain gluten, but one of those other additives or foods may be the source of digestive trouble. I'm thinking the genetic test would at least confirm CD has become active or CD is not the problem so we can continue to investigate why the villi are blunted (viral infection, massive antibiotics after appendectomy, some other food sensitivity). |
|
| Back to top |
|
|
aklap
Joined: 02 Oct 2004
Posts: 10974
Location: WI, USA
|
| Posted: Mon Mar 02, 2009 2:22 pm Post subject: Re: negative test blunted villi |
|
|
| janiekay wrote: | I'm wondering about the third option here of genetic testing for the two genes present in people with celiac.
I've seemingly gone through the process backwards: scope and then blood panel. Scope showed blunting, blood work was negative. I am trying to figure out how the 20% of serionegative people get confirmed with CD. I assume it's if they improve on a gf diet. But what about people without symptoms? Are serionegative people confirmed with genetic testing? I understand it is an expensive test, but it seems the most common sense one to have, especially when trying to determine if children might have the issue.
I imagine that I could improve on GF because I am cutting out so many other additives and foods that contain gluten, but one of those other additives or foods may be the source of digestive trouble. I'm thinking the genetic test would at least confirm CD has become active or CD is not the problem so we can continue to investigate why the villi are blunted (viral infection, massive antibiotics after appendectomy, some other food sensitivity). |
Certainly the genetic test will tell you if you have the genetic make for CD. It won't tell you if you actually have the disease. That's what the tissue samples do - gives you that gold standard diagnosis. Most genetic testing will look for the DQ2 and DQ8 genes - I believe this accounts for 95 - 98% of those with Celiac.
Most experts feel that if you don't have either of these genes, then it's next to impossible to contract CD. While I'm no geneticist, I have to wonder...what about other genes that they haven't found yet? They are finding new genes along the way. The more you look...the more you find...
Also, it's felt that the DQ1 gene is a gluten sensitivity gene. Something that is not on the radar yet of most mainstream docs. The concept of Non-Celiac Gluten Sensitivity is ever evolving. Basically, it's that gluten causes you problems, but you don't necessarily have the autoimmune aspect of it. Either way - removing gluten in the answer. That's not to say you go straight to the diet to see. It's best to try to get proper testing done. In some cases [like mine] I was negative for CD, but I found out thru dietary trails gluten is no friend of mine.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
|
| Back to top |
|
|
Home-Based-Mom
Joined: 12 Aug 2008
Posts: 403
Location: California
|
| Posted: Mon Mar 02, 2009 8:44 pm Post subject: Re: negative test blunted villi |
|
|
| aklap wrote: |
Most experts feel that if you don't have either of these genes, then it's next to impossible to contract CD. While I'm no geneticist, I have to wonder...what about other genes that they haven't found yet? They are finding new genes along the way. The more you look...the more you find...
|
According to someone over at the celiac.com forum (who suffered more than 4 decades  before getting a diagnosis) out of all the "varieties" of genes DQ1-DQ8, only one (and of course I forget which one  ) is not ever going to have anything to do with celiac/gluten intolerance. Her particular genes are considered RA genes in the USA, but European doctors recognize the connection between them and celiac/gluten intolerance.
You're so right, Al. "The more you look...the more you find..."
And that's the truth! 
_________________
Sandi ~ learning to live in a world obsessed and infested with wheat.
"If it wasn't food 100 years ago, it isn't food now." Mike Huckabee
Support Operation Christmas Child |
|
| Back to top |
|
|
Taximom5
Joined: 09 Mar 2009
Posts: 4
|
|
| Back to top |
|
|
aklap
Joined: 02 Oct 2004
Posts: 10974
Location: WI, USA
|
| Posted: Mon Mar 09, 2009 7:42 pm Post subject: |
|
|
Yup. This is the study I was thinking about when I made my comment about finding new genes  Thanks for the link!
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
|
| Back to top |
|
|
|
Home
FAQ
Search
Memberlist
Usergroups
Register
Profile
Log in to check your private messages
Log in
