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Gluten Challenge Before Endoscopy


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33 replies to this topic

#16 IrishHeart

 
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Posted 10 October 2012 - 12:25 PM

So your blood tests were negative, too? I am going to keep going and get through this. Thank you for the encouragement!



Blood tests can be falsely negative for many reasons.
A good GI will do the endo/biopsy anyway. (even though most docs think the standard "protocol" says he should not bother if they are neg)
You sound like you are in good hands.
Good luck, hon. Hang in there.
Keep us posted. :)
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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


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#17 tom

 
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Posted 10 October 2012 - 01:33 PM

...
Tom-
The specific problem I have with your post is that it suggests that the OP needn't remain gluten-free to give the doctor/endoscopy/biopsy the BEST opportunity for accuracy.
...

The specific problem you should have is w/ the Dr not telling KikiB to continue the challenge post-serology in the first place. I specifically asked my question to clarify that.
Not sure what about that is confusing.
Do you think that the phrase "a case can be made" = "here I am, making this case!" ?
It doesn't.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#18 tom

 
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Posted 10 October 2012 - 01:39 PM

Blood tests can be falsely negative for many reasons.
A good GI will do the endo/biopsy anyway.
...

Wouldn't the better GIs do both blood & endo/biopsy after a single gluten challenge, not setting up the need for a SECOND gluten challenge?

Can't recall seeing this situation here before.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#19 IrishHeart

 
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Posted 10 October 2012 - 01:57 PM

Wouldn't the better GIs do both blood & endo/biopsy after a single gluten challenge, not setting up the need for a SECOND gluten challenge?

Can't recall seeing this situation here before.


The OP stated she went off gluten herself after the blood work.

She also stated the doctor's office told her to stay on it. So she resumed it.

In your rush to pick a fight with me (as always) you may have missed that part.

yes, of course, IDEALLY a gluten challenge should be done once and both tests done. But this was not the case.

All I said was I am glad she is in good hands and her doctor is doing the biopsy, IN SPITE OF NEG BLOOD WORK.

This does not require an argument, does it? nope.

You like to argue, Tom and you like to isolate sections of what people say with little regard for the CONTEXT for how it is said. I'll not play this game with you.

You do it to me ( and often to others)---you try and twist my words.

I said it in the context that her doctor is doing the right thing by scheduling a biopsy, even though the blood panel was negative. Most doctors would just abandon her.

That is all.

Will you just leave it alone?
  • 1

"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


#20 1desperateladysaved

 
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Posted 10 October 2012 - 01:59 PM

I hope your test results will reflect the truth. I hope you won't be extremely uncomfortable in the meanwhile. I hope you can go totally gluten free very soon. I am glad that you seem to have figured out the problem so soon after mono. (I didn't figure it out for 30 years) Still, you will suffer through this for a time. Be ready, get ready, to go back to your diet as soon as possible do it!

Diana
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#21 ravenwoodglass

 
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Posted 10 October 2012 - 02:00 PM

So your blood tests were negative, too? I am going to keep going and get through this. Thank you for the encouragement!


Kiki I also had false negative blood tests and had to do 2 challenges. The first was after an allergist set up an elimination diet and I had been gluten free at that point for 2 weeks. My reaction was severe and that doctor told me never to eat gluten again. He then set me up with a GI doctor and I had to wait a month to get in. The GI doctor demanded a second challenge before the biopsy. The results were dire.
If you can keep going without becoming seriously ill then go ahead and do so if you need the official diagnosis. Do keep your doctor in the loop as to your reactions. Call and speak to the nurse in the doctor's office if things get severe so he/she can relay your reactions to the doctor. They may be able to move up your appointment or may even tell you to stop the challenge and diagnose. No matter what the results of your testing it sounds like your body is giving you the answer as far as whether you tolerate gluten or not.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#22 tom

 
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Posted 10 October 2012 - 02:11 PM

...
In your rush to pick a fight with me (as always) you may have missed that part.
...

? :huh:

My comment that the two-challenge GI isn't what I would call a "good GI" is somehow seen as a personal attack on YOU? :rolleyes:

I find it hard to believe that any unbiased third-party observer would call that "picking a fight".
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#23 KikiB

 
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Posted 10 October 2012 - 02:25 PM

I hope your test results will reflect the truth. I hope you won't be extremely uncomfortable in the meanwhile. I hope you can go totally gluten free very soon. I am glad that you seem to have figured out the problem so soon after mono. (I didn't figure it out for 30 years) Still, you will suffer through this for a time. Be ready, get ready, to go back to your diet as soon as possible do it!

Diana


Thank you, Diana!
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#24 KikiB

 
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Posted 10 October 2012 - 02:30 PM

Kiki I also had false negative blood tests and had to do 2 challenges. The first was after an allergist set up an elimination diet and I had been gluten free at that point for 2 weeks. My reaction was severe and that doctor told me never to eat gluten again. He then set me up with a GI doctor and I had to wait a month to get in. The GI doctor demanded a second challenge before the biopsy. The results were dire.
If you can keep going without becoming seriously ill then go ahead and do so if you need the official diagnosis. Do keep your doctor in the loop as to your reactions. Call and speak to the nurse in the doctor's office if things get severe so he/she can relay your reactions to the doctor. They may be able to move up your appointment or may even tell you to stop the challenge and diagnose. No matter what the results of your testing it sounds like your body is giving you the answer as far as whether you tolerate gluten or not.


Thank you. I caused part of this myself by assuming when I was done with the blood test, I could stop eating the gluten. I didn't realize you needed to keep eating it for the endoscopy.

Either way it turns out, it's obvious to me I can no longer tolerate gluten.
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#25 IrishHeart

 
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Posted 10 October 2012 - 02:43 PM

? :huh:

My comment that the two-challenge GI isn't what I would call a "good GI" is somehow seen as a personal attack on YOU? :rolleyes:

I find it hard to believe that any unbiased third-party observer would call that "picking a fight".



There you go again, avoiding the part you missed. She stopped the gluten. The doc did not tell her to do that.

And, I'll try to explain it again.

You said "the better GI". well, yeah, but, that's a "hypothetical" situation.

We are talking with the OP and HER situation.

The GI she has scheduled a biopsy, despite a negative blood test.

Her GI is following through.

This is a good thing, whether you think so or not. It means she is not being abandoned.

I also suggested if it becomes too much for her, she should bag it because I do not like to see anyone suffer.
  • 1

"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


#26 GottaSki

 
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Posted 10 October 2012 - 02:53 PM

I caused part of this myself by assuming when I was done with the blood test, I could stop eating the gluten. I didn't realize you needed to keep eating it for the endoscopy.

You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#27 IrishHeart

 
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Posted 10 October 2012 - 03:01 PM

You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)



Well said....and I agree completely. We are here for you and we are trying to give you our very best advice.

Best wishes to you.
  • 0

"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


#28 Gemini

 
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Posted 11 October 2012 - 07:11 AM

? :huh:

My comment that the two-challenge GI isn't what I would call a "good GI" is somehow seen as a personal attack on YOU? :rolleyes:

I find it hard to believe that any unbiased third-party observer would call that "picking a fight".


Boy, what a train wreck this thread has become! Ya know, Tom, Irish and GottaSki have offered up phenomenal advice to the OP and yet, you keep on
making attacks and challenging everything they say. I mean, really, what the hell is your problem? Who pee'd on your Cheerios this week? :blink:
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#29 KikiB

 
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Posted 11 October 2012 - 08:50 AM

Well said....and I agree completely. We are here for you and we are trying to give your our very best advice.

Best wishes to you.


Thank you, IrishHeart. I appreciate the advice! I am learning a lot and everyone is making this process better -- I don't feel so alone. :)
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#30 KikiB

 
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Posted 11 October 2012 - 08:55 AM

You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)



Thanks, Lisa! No apologies necessary. Not your fault that things went sideways here. I'm going to keep going and at this point I feel like I will make it. Just keeping my eye on the big goal. When I have my consultation with the GI, I'll tell her how hard this is on my system, and hopefully she'll schedule the endo quickly. I'm very grateful for all of your help!
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