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

[tom]

Moderator's note:

This discussion began in a topic started by a new member with several questions. It has been split out as a generic discussion of the question. There are differing views on this. What I perceive is that there is no one answer that fits everybody. Healing rates differ for many reasons, and the most significant factor is the amount of damage to heal from. - psawyer (mod).

  On 10/5/2012 at 3:21 PM, MitziG said:

...

Also it is critically important that you do NOT go gluten free until after the endoscopy. Biopsies look for damage, which can heal quickly on the gluten free diet.

Really? I don't think I've seen any studies on that. (Rapid healing)

Any link?

[mushroom]

Here's what the Mayo Clinic says:

Usually several weeks after removal of gluten from the diet the small intestine begins to heal......

Open Original Shared Link

How many weeks is several? I don't know. Your several and mine may vary. Two weeks is not several to me, but three weeks could be.

I don't believe the poster was referring to total healing, just healing that may affect testing results.

[tom]

Can't read the pdf until later but does several weeks = "quickly" in this context?

[mushroom]

  On 10/9/2012 at 6:04 PM, tom said:

Can't read the pdf until later but does several weeks = "quickly" in this context?

Well, in the context of taking two years to heal completely for adults, I would say that is probably "quite" quickly.

[MitziG]

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. But since they have no way of knowing the extent of the damage (if any) all precautions should be taken to avoid a false negative biopsy.

[tom]

  On 10/11/2012 at 6:02 PM, MitziG said:

... For instance, if the OP has only mild villous blunting, a week or two could make the villi appear normal.

...

Very interesting.

I'd love to read up more on that. Remember where you saw that?

Seems at odds w/ "several weeks to begin to heal" quote from Mayo.

  On 10/9/2012 at 5:44 PM, mushroom said:

Here's what the Mayo Clinic says:

Usually several weeks after removal of gluten from the diet the small intestine begins to heal......

Open Original Shared Link

...

[bartfull]

Tom? Have you been glutened recently? I ask because irritability is one of MY glutening symptoms. Seems that lately you have been feeling the way I do when I get glutened.

[Lisa]

  On 10/11/2012 at 11:14 PM, bartfull said:

Tom? Have you been glutened recently? I ask because irritability is one of MY glutening symptoms. Seems that lately you have been feeling the way I do when I get glutened.

I don't share the same impression bartfull. I, rather see it as Tom's attempt to bring proper and accurate information to this forum.

Information on a forum (any forum) has a tendency to stagnate. I suppose Tom feels passionate that the members here should be exposed to the most current research available.

You may not appreciate his approach or may challenge his facts, but as any member here, he has the right to post, free from personal criticism.

We have had many, many healthy debates here over these many years....which brought forth some wonderful information from some really great minds. I have always enjoyed them.

[tom]

I'd actually really like to know more about research on the topic in the post.

As such, I was feeling Inquisitive rather than Irritated.

OT P.S. I think I'm soon buying a wider-necked guitar. Always like seeing your av.

[tom]

Ahhhhh sneaky Lisa snuck one in while I slowly typed. Was expecting mine to show up immed under Barty's. Looks disjointed now.

[bartfull]

I guess it's not so much what you say, as how you say it that made me think you were irritated. I have often found myself offending people by being too blunt, when I never meant anything by it. A friend told me that if I preface what I say with, "In my opinion..." or "It seems to me..." that I could tell them what I think without seeming like I thought MY opinion was the only right one. I STILL have trouble with that sometimes, but I'm trying. (Except when I get glutened - then I don't care WHOSE feelings I hurt! )

I think you'll enjoy a wide neck. All of mine are standard width but that's because of my "delicate" female fingers. I am LOVING the baritone though, even though the longer fret spacing sure does make me stretch.

[Lisa]

  On 10/11/2012 at 11:46 PM, tom said:

Ahhhhh sneaky Lisa snuck one in while I slowly typed. Was expecting mine to show up immed under Barty's. Looks disjointed now.

"a wider neck"...don't you have to have bigger hands or THUMBS?

[mushroom]

In general, Lisa, or Tom in particular???

[Lisa]

  On 10/12/2012 at 12:20 AM, mushroom said:

In general, Lisa, or Tom in particular???

...either way. Hey, I just got back from Rome, remember! I've seen all I need to see for the time being, but, I'm easily amused. I have seen Tom's VERY large shoes...

EDIT (after Peter's post): Yes sir. Heading over to Psillie Land.

[mommida]

  On 10/11/2012 at 7:49 PM, tom said:

Very interesting.

I'd love to read up more on that. Remember where you saw that?

Seems at odds w/ "several weeks to begin to heal" quote from Mayo.

Tom,

The medical community statements on the amount of time to heal are just GUESSES. The truth is every individual is different.

The medical community made the most advancement in digestive knowledge from an accident. Dr. William Beaumont had a patient who was shot in the gut. The wound never fully healed and the man had a hole in his side made into a "window" to watch and learn digestion. Just saying it is a fascinating story, if you like to look up medical articles.

[tom]

  On 10/12/2012 at 2:42 PM, mommida said:

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.

  On 10/11/2012 at 6:02 PM, MitziG said:

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.

[IrishHeart]

  On 10/14/2012 at 12:24 AM, tom said:

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.

[tom]

  On 10/14/2012 at 12:40 AM, IrishHeart said:

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.

  On 10/14/2012 at 12:40 AM, IrishHeart said:

...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.)

[tom]

  On 10/14/2012 at 8:22 PM, squirmingitch said:

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.

[tom]

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

  On 10/14/2012 at 5:51 PM, IrishHeart said:

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."

https://www.celiac.com/articles/979/1/Challenging-the-Gluten-Challenge---By-Dr-Ron-Hoggan-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.

[squirmingitch]

  On 10/14/2012 at 10:39 PM, tom said:

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.

[squirmingitch]

  On 10/14/2012 at 10:53 PM, tom said:

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.

[tom]

  On 10/14/2012 at 11:00 PM, squirmingitch said:

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.

  On 10/14/2012 at 11:00 PM, squirmingitch said:

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'.

[tom]

  On 10/14/2012 at 11:06 PM, squirmingitch said:

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.

[tom]

  On 10/14/2012 at 11:30 PM, psawyer said:

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.