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How Much Gluten, For How Long, Must You Eat Before Testing?


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26 replies to this topic

#16 tom

 
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Posted 12 October 2012 - 12:23 PM

Tom,

The medical community statements on the amount of time to heal are just GUESSES.
...

Hi mommida,
I suppose I have more belief in the scientific method than you do and in the resultant incremental advances in knowledge.
We know more today than we did 5 yrs ago & every year we'll know more than we do today.

So, I don't believe it's "just guesses", tho if you do I'd think your comment would be more appropriately aimed at the post attaching numbers to vaguely defined situations.

Tom, depending on the extent of the damage, a week or two could make the difference between a positive or negative result. For instance, if the OP has only mild villous blunting, a week or two could make the villi appear normal. After all, the intestinal lining renews itself every three days. Now, if the OP has total villous atrophy, likely a week or two would make no difference.


  • 0
>>>>>>> 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

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#17 IrishHeart

 
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Posted 13 October 2012 - 04:40 PM

P.S. I'm a little surprised there's no earlier reply. All the usual posters out having wkend fun maybe?


No, I am sure the "usual posters" are just afraid to post anymore about this topic, having been shouted down and argued with repeatedly.

Blevois,

"gluten light" is not helpful for symptom resolution.

You need to be strictly gluten free for symptoms to resolve, but
conversely, you need to be gluten heavy for about 3 months for the best diagnostic outcome on a biopsy (according to the leading celiac centers).

Someone will disagree with this, I am sure.

You have a POSITIVE celiac panel and that means you have celiac.

If your doc agrees, then welcome to the club.

GO gluten-free now.
You could stop eating gluten right now and start to get well.

HOWEVER, if you wish to have a biopsy, for a baseline reading of your villi, or because your doc requires it for a "real diagnosis", then, here is my best advice, and offered IMHO, based on the current celiac center research as we know it: if you are scheduled for a biopsy: EAT UP.

*** hopefully, I have given enough caveats and disclaimers and IMHOs and evidence for this post to be acceptable.
  • 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


#18 tom

 
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Posted 13 October 2012 - 06:31 PM

No, I am sure the "usual posters" are just afraid to post anymore about this topic, having been shouted down and argued with repeatedly.
...

Oh please ....
I'm not the one bolding or using allcaps in these misguided disagreements.
If someone believes 3 months challenge is "needed to have any hope of a positive dx" (despite that being imo irrelevant in this thread, given an already-positive blood test) disregarding all the contrary evidence that it *is* possible to get DX'd on less than 3 months, there are many non-controversial ways to say so.

This thread isn't really about the same topic as those where someone is trying to launch testing after having been gluten-free.


...conversely, you need to be gluten heavy for about 3 months for the best diagnostic outcome on a biopsy (according to the leading celiac centers).

Someone will disagree with this, I am sure.

Someone, as in all but one leading celiac center, is how it's been presented here by others.

And the dispute is the word "need" again.

Last study I saw had no diagnostic difference w/ lower gluten. (The key info is that once over the threshold, how high doesn't matter.)
  • 2
>>>>>>> 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 tom

 
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Posted 14 October 2012 - 02:39 PM

THANK YOU IH for that MOST informative information & the link to the article!!!!!!!! This should clear up a lot of confusion on the subject.

The article's header is:
This article appeared in the Autumn 2005 edition of Celiac.coms Scott-Free Newsletter.

So, no, 7yo info shouldn't be expected to clear this up.

Did the best current celiac blood tests even exist in 2005?

We really need to use current info.
  • 1
>>>>>>> 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

#20 tom

 
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Posted 14 October 2012 - 02:53 PM

I did chuckle a bit in finding that the article is from 2005.

I read this recently, for what it is worth.

"Another problem faced by gluten-free individuals who want a diagnosis is that it can take more than five years after returning to a regular gluten-containing diet before the characteristic damage of celiac disease can be seen on a biopsy (1).

Simply put, after beginning a gluten-free diet, only a positive biopsy is meaningful. A negative biopsy does not rule out celiac disease.

A variety of opinions have been offered regarding how much gluten, for how long, should result in a definitive biopsy. The reality is that no such recommendation is consistent with the medical literature (1-4).

Some people with celiac disease will experience a return of intestinal damage within a few weeks of consuming relatively small amounts of gluten. Such brief challenges are valuable for these individuals.

However, many people with celiac disease or dermatitis herpetiformis will require much larger doses of gluten, over much longer periods, to induce characteristic lesions on the intestinal wall. Unfortunately for these latter individuals, a negative biopsy after a brief gluten challenge can, and often is, misinterpreted as having ruled out celiac disease.

Blood tests can compound this problem. If, as seems likely, celiac patients who are slow to relapse are also the ones who develop milder intestinal lesions, they are the very celiac patients for whom blood tests are very unreliable (5).

Claims to have ruled out celiac disease based on brief challenges with small quantities of gluten is a mistake that could lead to serious, even deadly, consequences."

http://www.celiac.co...-EdD/Page1.html

Besides it being from 2005, I don't see how much this relates to the OP's situation of already having a positive on the bloods.
And to think *I* keep hearing accusations of going OT. (Which I disagreed w/, for the record)

A lot has changed since 2005. Imho just about everyone who wrote technical articles on celiac in 2005 would write them differently in 2012.
  • 0
>>>>>>> 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

#21 squirmingitch

 
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Posted 14 October 2012 - 03:00 PM

The article's header is:
This article appeared in the Autumn 2005 edition of Celiac.coms Scott-Free Newsletter.

So, no, 7yo info shouldn't be expected to clear this up.

Did the best current celiac blood tests even exist in 2005?

We really need to use current info.


Oh but Tom, it clears it up very nicely for me. It states in essence that we are all individuals & we all have varying degrees of damage or not at any given time & that depending on our individual circumstances we may or may not show villi damage over a wide range of time.

I fail to see what your statement "Did the best current celiac blood tests even exist in 2005?" has to do with the article as the article is speaking of biopsies.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#22 squirmingitch

 
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Posted 14 October 2012 - 03:06 PM

I did chuckle a bit in finding that the article is from 2005.

Besides it being from 2005, I don't see how much this relates to the OP's situation of already having a positive on the bloods.
And to think *I* keep hearing accusations of going OT. (Which I disagreed w/, for the record)

A lot has changed since 2005. Imho just about everyone who wrote technical articles on celiac in 2005 would write them differently in 2012.


It relates to the OP's question:
"Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?"

Read that last word ------ BIOPSY.
  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#23 tom

 
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Posted 14 October 2012 - 03:16 PM

Oh but Tom, it clears it up very nicely for me. It states in essence that we are all individuals & we all have varying degrees of damage or not at any given time & that depending on our individual circumstances we may or may not show villi damage over a wide range of time.

Feel free to correct me if I'm wrong, but I'm leaning towards thinking that you & everyone else already thought that before reading this 2005 article, even those that read it way back then.

I fail to see what your statement "Did the best current celiac blood tests even exist in 2005?" has to do with the article as the article is speaking of biopsies.

The article is "Challenging the Gluten Challenge" & is in no way limited to biopsies! Are we reading the same link? He discusses - no, disussED - blood tests, antibodies, their specificity (reminder here that best current blood tests didn't exist then) & something called a 'rectal challenge'. :unsure:
  • 0
>>>>>>> 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

#24 tom

 
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Posted 14 October 2012 - 03:25 PM

It relates to the OP's question:
"Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?"

Read that last word ------ BIOPSY.

I have no idea why so many are so adamantly going off on these tangents.
Several of us answered the orig Q. (The "Does anyone know" answer is "no, no one can be sure".)

The OP, Blevois, was already diagnosed by blood.
The topic of the thread is not about getting a dx by biopsy.
  • 0
>>>>>>> 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

#25 tom

 
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Posted 14 October 2012 - 04:30 PM

See, there is the question and it specifically asks using the explicit word, "biopsy."

Ok then, before I go out, what would YOU hypothetically want your own Dr to say w/ "very high" positive bloods and the hypothetical negative biopsy?

Didn't most of the 1st few replies comment that the OP's blood results should be enough to dx celiac? Along that path, the endoscopy is post-diagnostic. Confirms if pos, but ignored if neg isn't a dx flowchart.
  • 0
>>>>>>> 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

#26 psawyer

 
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Posted 14 October 2012 - 04:52 PM

We are in a position to answer the original question. We are not in a position to tell his doctors how to diagnose celiac disease. We are all aware that some doctors still insist on a positive biopsy result before making a diagnosis. We don't know why the OP is concerned--maybe a documented diagnosis is needed to get accommodations at school, or for some other reason.

I see nothing in the OP to say that a diagnosis of celiac disease has already been made.

He has positive blood tests, and his medical team want to do a biopsy. He has a question about that. Let's keep our responses to that question. The member posted once, looking for an answer. He hasn't been logged on since before Tom's first reply. When he comes back, he will see this mess.

He did not ask us to diagnose--he asked about the accuracy of the biopsy under his specific circumstances. Please confine your replies to the original question.

Edited by psawyer, 14 October 2012 - 04:54 PM.
Lisa posted while I was composing.

  • 3
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#27 IrishHeart

 
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Posted 15 October 2012 - 09:17 AM

I would love to live in a world where each and every doctor would diagnose based on positive blood work regardless of biopsy result. I just don't think that is our current reality.





......as it was back in 2005.

I knew the minute I posted that article that the date of it would be used as a reason to dismiss it.

The truth is, it would be great if everyone had a positive blood test too. There is more work getting a "proper diagnosis" than there needs to be.

I still think the article raises one important issue: many studies conclude with a different opinion about biopsies and "how much gluten is enough".

I still can't find a definitive answer , but the “suggested” average is 2--3 months (Dr. Green) and the Univ. of Chicago Celiac Center information Karen has posted.

The most recent article I read (2012)
regarding the gluten challenge discussed a 2 -week challenge with "just 1.5 pieces of bread"
and provided this conclusion: "over 75%" of the 20 people” in the study "met the criteria for celiac disease".

However, it should be noted that these were 20 adults with biopsy-proven celiac disease, so I do not see how that is at all relevant to the OP's situation.

The article I posted, despite it being dated, says essentially the same thing Dr. Green and others have said:

“A variety of opinions have been offered regarding how much gluten, for how long, should result in a definitive biopsy. The reality is that no such recommendation is consistent with the medical literature  “

If the doctor is following the protocol of the "gold standard" which requires a positive biopsy as a means of determining that someone has celiac, then what choice does someone have but to go gluten heavy (and I used that term just to differentiate it from gluten light) and hope for the best.

This whole discussion is based on the fact that the allergist said: go gluten free and now, the GI thinks 7-10 days is sufficient for a gluten challenge.

Maybe it is.

But, if the biopsy is negative, then what?

The OP still has positive blood work. Those of us who tested negative on celiac blood panels would have found that sufficient and it would have spared us years of illness.

Hopefully, s/he will adopt a strict gluten-free diet and never look back.

As more and more of these threads about the gluten challenge appear, I think maybe we all need to say "we don't really know" more often.

As for me, I will just avoid them from now on. :lol:
  • 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





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