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#1 NateJ

 
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Posted 02 August 2013 - 04:51 AM

What's the story with the Celiac blood test. Is it accurate? Do GI doctors live by this result?

I had one done in 2011 that showed I had it apparently, and now just had another (new GI) and it shows normal levels.

I'm not sure what to do with that. Should i call my GI and ask him?

 

 


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#2 1desperateladysaved

 
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Posted 02 August 2013 - 05:37 AM

Were you gluten free when the blood test was done?  Did you have the full celiac panel done?  Were you eating normal amounts of gluten?

 

If you were gluten free for a couple years, the negative results would show that you are doing a good job keeping gluten out of your diet.  If you were eating gluten the whole time, that would be strange.

 

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#3 IrishHeart

 
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Posted 02 August 2013 - 06:41 AM

What's the story with the Celiac blood test. Is it accurate? Do GI doctors live by this result?

I had one done in 2011 that showed I had it apparently, and now just had another (new GI) and it shows normal levels.

I'm not sure what to do with that. Should i call my GI and ask him?

 

Nate,

That's how celiac testing works. Your recent results reveal that you have the disease in check.

 

This is a very good thing. You want normal levels. This is the goal!

 

You were diagnosed with celiac because you had elevated levels of antibodies that indicate an immune reaction to gluten. 

 

You went gluten free and your gut healed.

 

Follow up testing should reveal normal levels of these same antibodies because it means you have the disease under control by eating a gluten free diet.

 

It does not mean you are cured. You still have celiac and you will always have it. And by following the gluten-free diet, you keep it controlled.

 

You should be thrilled! I'm happy for you. :)


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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"If you want to lift yourself up, lift up someone else" Booker T. Washington

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#4 kareng

 
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Posted 02 August 2013 - 07:03 AM

To add to what Irish said -

 

A body makes antibodies as a response to an invader - like a germ.  Normally, these antibodies attack the germ.  In the case of Celiac, the antibodies attack the intestines.  This may be the body's way of keeping us from digesting something it thinks is an invader.  However, destroying the intestines isn't really a good idea unless it causes people to stop eating the offending invader.

 

 

The blood tests measure the presence of an antibody in your blood.  When a person with Celiac eats gluten, their body makes antibodies that attack the intestines.  When a person with Celiac stops eating gluten, their body stops making the antibodies.  When the body isn't making antibodies, a test looking for the antibodies would be negative.

 

Follow-up blood testing is done to make sure you are following a gluten-free diet and to catch the rare person whose body doesn't stop making the antibodies.

 

Does this answer your question?  No Pop Quiz today but maybe next class. 

 

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#5 NateJ

 
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Posted 02 August 2013 - 07:09 AM

ok, that's what i thought. I just wanted confirmation. I'm trying to figure out why my doctor would want to run the test again. I tried explaining to him that I haven't eaten gluten in over 2 years but he seemed to not hear me.

He wants to diagnose me again for whatever reason, or at least figure out why i'm loosing weight, and have constant stomach pain.

scopes scheduled for the end of the month too.


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#6 kareng

 
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Posted 02 August 2013 - 07:15 AM

ok, that's what i thought. I just wanted confirmation. I'm trying to figure out why my doctor would want to run the test again. I tried explaining to him that I haven't eaten gluten in over 2 years but he seemed to not hear me.

He wants to diagnose me again for whatever reason, or at least figure out why i'm loosing weight, and have constant stomach pain.

scopes scheduled for the end of the month too.

 

 

He might have wanted to make sure you are really gluten-free.  And rule-out refractory sprue. 


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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#7 IrishHeart

 
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Posted 02 August 2013 - 07:26 AM

He might have wanted to make sure you are really gluten-free.  And rule-out refractory sprue. 

 

 

Exactly. 

 

He sounds like a thorough doc to me. He is starting by ruling out active celiac disease first with the antibodies test..

 

Glad you are in good hands. Good luck.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 nvsmom

 
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Posted 03 August 2013 - 08:01 AM

I think the doctors don't always believe us when we say we are gluten-free. I had my blood rechecked after one year and it was still slightly elevated, and now my doctor keeps rechecking it every month or two like he thinks it will suddenly drop if I am more careful.  LOL  :rolleyes: I couldn't be any more gluten-free.

 

Congrats on the negative tests.


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#9 AlwaysLearning

 
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Posted 03 August 2013 - 09:55 PM

Wanting to run the same test again makes me think of that quote about insanity: doing the same thing over and over again and expecting different results.


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#10 AlwaysLearning

 
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Posted 03 August 2013 - 11:07 PM

Just another thought, but have you tried avoiding fluoride?

I didn't know that people could actually be allergic to it until someone said something in another thread and I researched more, but gastrointestinal problems are one of the symptoms. Another scientific study linked hypersensitivity to fluoride to those with other autoimmune system or gastrointestinal problems which immediately made me think of everyone with celiac.

Some more reading shows that the sources of fluoride in our current food and water landscape are way broader today than they have been in the past because it is used in pesticides in addition to dental products. I may finally know why anything but spring water upsets my stomach.


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#11 NateJ

 
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Posted 05 August 2013 - 05:01 AM

Just another thought, but have you tried avoiding fluoride?

I didn't know that people could actually be allergic to it until someone said something in another thread and I researched more, but gastrointestinal problems are one of the symptoms. Another scientific study linked hypersensitivity to fluoride to those with other autoimmune system or gastrointestinal problems which immediately made me think of everyone with celiac.

Some more reading shows that the sources of fluoride in our current food and water landscape are way broader today than they have been in the past because it is used in pesticides in addition to dental products. I may finally know why anything but spring water upsets my stomach.

uh, no that one has never occured to me.

I make it a point to never drink tap water unless its boiled first. I always drink bottled water. I learned that lesson the hard way from traveling out of the country.

I know its in toothepaste but do they even make a flouride free one? Also, do you have a link to this study? I'm curious, but it seems worse than trying to avoid gluten in all its forms.

 

and I did get all my blood tests back last night. The values were insanley low on all the IG test. So at least i know i'm not getting contaminated from something i haven't thought of.

It's not helping my current level of stomach distress, and kind of concerns me more because i'm not getting much better.

My next step is to the urologist since they found more stones on my ab CT last week.


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#12 1desperateladysaved

 
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Posted 05 August 2013 - 10:35 AM

Tom's natural toothpaste does make toothpaste without fluoride.  I am sure there are others.  Lately I am using baking soda.  It is cheap!

 

D


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#13 IrishHeart

 
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Posted 05 August 2013 - 11:15 AM

Wanting to run the same test again makes me think of that quote about insanity: doing the same thing over and over again and expecting different results.

 

 

But I am not sure what this quote has to do with this situation at all. This is standard protocol for follow-up care with celiac.

 

And, you want to see a different result: a low antibodies level.

 

He is still having symptoms and the first thing a doctor should do is make sure the antibodies are coming down.

 

Otherwise, he does not have the celiac under control.

But his good test results show that he does. so it may be something else causing his

problems.

 

Nate,

 

before you start thinking that fluoride and toothpaste and water and so many other things are  contributing to your problem, see the urologist

and then, go back to the GI doctor. It's not always about gluten or things we ingest. It could be something amiss in your GI tract that is easily remedied

 

You could simply have other GI issues, relatively common in conjunction with celiac disease (h. pylori, microscopic colitis, gastritis, lack of good gut bacteria.)

'

I'd get checked out by the GI doctor if I were you, but it's your call. Offered  IMHO


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#14 kareng

 
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Posted 05 August 2013 - 11:47 AM

Nate- I don't think I would worry about rare things like flouride intolerance right yet. Sounds like the doc is eliminating the obvious problem first - problems with Celiac and the gluten-free diet. See what the scope says and the urologist. Get that info and take care of the issues they find. Then you can see if you need to look into more obscure problems.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#15 NateJ

 
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Posted 06 August 2013 - 12:03 PM

That was pretty much my plan.

I have an appt on thursday with my urologist then i need to follow up with the scope tests as soon as i have five free minutes and a day off work to do them.

This i'm sure most know is a busy time of the year. i have two kids going back to school right now. ugh

 

Meanwhile i'm taking probiotics and drinking lots of water, also being nice to my stomach and not eating anything to out of control.

Thanks for the good advice everyone.


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