Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


nvsmom

Member Since 12 Jun 2012
Offline Last Active Today, 05:51 PM
****-

Posts I've Made

In Topic: Bristol Stool Form Scale - Poop!

Today, 03:58 PM

LOL I was a 2 and sometimes a 1 or 3.  I had no clue at all that it wasn't the norm.  :rolleyes:


In Topic: No Serology Needed?

Today, 02:54 PM

nsv, I am challening you on a point cautiously as you are a moderator, but both the national and international guidelines (which are both frequently referenced on this site, and hugely informative) recommend HLA for those of us with ambiguous testing, especially those of us with biopsy positive results. There are many things that can lead to a positive biopsy, and it is important to rule OUT what ISN'T, just like with neuro testing.

 

Hi Murphy 203,

You are correct that HLA testing can help rule things out, but with a positive test, or biopsy, you probably have your answer... probably. You are correct that the HLA can help clarify some questionable test results, but from what I have read, and heard from a minority of celiacs, I believe there are a very small number celiacs who do not have the HLA genes.  I could be completely wrong...  I'm waiting for more information to sway me, but I haven't been inclined to change my mind yet. Many don't agree with me, and that is fine with me since they very well may be correct. You may be right, and most will probably agree with you.  :)

 

 It's a shame that all of our celiac disease tests aren't 100% specific to celiac disease.  Knowing there is a 5% or so chance of a positive not being caused by celiac disease can make trusting a diagnosis of celiac disease difficult for some. It would do away with some of the need for the HLA tests.

 

I do firmly believe that a positive test is almost always positive for a reason though, and that reason is celiac disease almost all of the time.  I think of it like a pregnancy test.  Some people get the very dark lines whereas others get a faint line but 9 months later it will almost always mean the same thing.  

 

Best wishes.

 

ps.  Please feel free to challenge me.   :)  I think I was made a mod because I like to talk a lot around here, and have a propensity towards spewing out facts and questioning the medical community.   ;) LOL


In Topic: No Serology Needed?

Today, 02:51 PM

Hi Murphy 203,

You are correct that HLA testing can help rule things out, but with a positive test, or biopsy, you probably have your answer... probably. You are correct that the HLA can help clarify some questionable test results, but from what I have read, and heard from a minority of celiacs, I believe there are a very small number celiacs who do not have the HLA genes.  I could be completely wrong...  I'm waiting for more information to sway me, but I haven't been inclined to change my mind yet. Many don't agree with me, and that is fine with me since they very well may be correct. You may be right, and most will probably agree with you. :)

 

 It's a shame that all of our celiac disease tests aren't 100% specific to celiac disease.  Knowing there is a 5% or so chance of a positive not being caused by celiac disease can make trusting a diagnosis of celiac disease difficult for some. It would do away with some of the need for the HLA tests.

 

I do firmly believe that a positive test is almost always positive for a reason though, and that reason is celiac disease almost all of the time.  I think of it like a pregnancy test.  Some people get the very dark lines whereas others get a faint line but 9 months later it will almost always mean the same thing.  

 

Best wishes.


In Topic: Gotta Brag

Today, 10:20 AM

:D  Thanks again!


In Topic: Diagnosed Toddler Exposure To Gluten Tonight

Today, 10:19 AM

I am sorry that he is ill and hope he is well soon.

 

Celiacs generally feel poorly for a few days, and up to a few weeks depending on symptoms.  The immediate reaction (vomitting) may fade but other symptoms like fatigue and crankiness may linger for a while.

 

Off topic:

I'm afraid that my hackles are a bit up after reading the comment about not keeping him in a bubble.  :(  I don't feel like my family lives in a bubble because we don't take the risk of eating out in restaurants  I just feel like a mom who has to cook more than average, but not like I live in a bubble. ;)  To me, eating out is a luxury and not a need.  KWIM?

 

I didn't write this to attack you, and hope it didn't come off that way - if it did the I apologize.  I just want you to be aware of how that comment may sound to some celiacs.  I know it is hard to keep a celiac, and especially a young celiac, safe. It sounds like you've been doing a good job so far.

 

Best wishes.  I hope he is well soon.