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Gluten Challenge
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I am new to the forum and have learned so much already. Thank you to all who have shared their experiences and knowledge I have a question about a gluten challenge: Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?

I have a positive antibody test (Ttg IGA) and was advised by the allergist that ordered the test to go gluten free. This was approximately 4 weeks ago. I went gluten free but not strictly so. I ate many items which may have been cross contaminated as well as eating out with friends on numerous occasions. In reality it was more like I was eating gluten light. My symptoms improved greatly, but I still had some residual pain. I called my allergist and she referred me to a GI doc. At the initial appointment, the GI says he wants to do an endoscopy. I told him I had been off gluten for a month and asked if I needed to start eating it again before the endoscopy. He said yeah, go back on it for 7-10 days. But that just doesn't seem like a adequate amount of time. Any thoughts? Any questions I should ask the GI before the endoscopy? Thanks in advance for any suggestions or commnets.

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I suppose it'd firstly depend on how light the gluten-light weeks were.

Stanford's Head of GI wanted me on a 1/2 slice of bread/day for a month years ago & recent studies have concurred that high levels were overkill, per NIH, celiac.com article authors etc.

It appears to me you were more light than that, mentioning cc & uninterrogated restaurants.

So that makes it a tougher call. I've gotta admit I don't know if I've seen a Dr call for as low as 7-10 days.

...Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?

...

Quite unfortunately, on an individual basis, the answer is probably "no".

Certainly there are some for whom it would or could. (Though perhaps a more important variable is whether enough biopsy samples were taken.)

Just as certainly, there are some for whom it won't.

Many celiacs are getting DX'd by blood results alone. I'd ask the Dr whether he'll dismiss celiac if he doesn't get a positive biopsy, despite the spotty nature of early damage, and of course, your positive blood test.

One way to go is to go ahead and call yourself a Celiac now via blood results & view the endoscopy as a separate investigation, recording baseline characteristics which could be very handy in years to come & looking for somewhat-common related conditions like Barrett's Esophagus.

Edited by psawyer
Removed comment at the end.
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I am new to the forum and have learned so much already. Thank you to all who have shared their experiences and knowledge I have a question about a gluten challenge: Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?

I have a positive antibody test (Ttg IGA) and was advised by the allergist that ordered the test to go gluten free. This was approximately 4 weeks ago. I went gluten free but not strictly so. I ate many items which may have been cross contaminated as well as eating out with friends on numerous occasions. In reality it was more like I was eating gluten light. My symptoms improved greatly, but I still had some residual pain. I called my allergist and she referred me to a GI doc. At the initial appointment, the GI says he wants to do an endoscopy. I told him I had been off gluten for a month and asked if I needed to start eating it again before the endoscopy. He said yeah, go back on it for 7-10 days. But that just doesn't seem like a adequate amount of time. Any thoughts? Any questions I should ask the GI before the endoscopy? Thanks in advance for any suggestions or commnets.

Welcome Blevois!

A couple thoughts:

You may have a negative biopsy regardless of the time of the challenge. It is also possible that it will be positive even with restricted amounts of gluten. If you were gluten light - it is possible that you were ingesting enough to keep the immune system reacting to gluten - it just is not possible for any of us to determine that. There is other important information that is gained from endoscopy regardless of the amount of gluten you have consumed. Changes in the structure of the small intestine, cellular changes, observation of other parts of your digestive track, etc..

I can tell you...from what I have read - the major celiac centers recommend 6-12 weeks for a challenge with one slice of glutenous bread per day being sufficient.

My concern for you stems more from the possibility that your GI may not have adequate experience &/or training with regard to Celiac Disease. Have you had any subsequent celiac blood testing after the initial tTG IgA ordered by your Allergist? If your GI has not ordered full celiac testing along with nutrient level testing and has suggested such a brief challenge, he may not be the best doctor to conduct your endoscopy.

It is unfortunate that Celiac testing processes are not yet uniform and are not always accurate. I hope you are able to get the answers you need. Regardless of the rest your testing results, you should remove ALL gluten from your diet for two reasons. Positive tTG IgA test and your positive reaction to your brief time gluten free/gluten light.

Let us know if you need more info...the celiac diagnosis process can be very confusing and frustrating. Keep ingesting gluten until you are sure you are done with all testing.

Good Luck :)

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I agree with what's already been said....but I have to defend myself! I wasn't posting because I was attending a Celiac Forum in Palo Alto (You know, Tom, over near Stanford! Where were YOU??) I met a very nice young lady from Germany who is living in Lafayette as an au pair. She just learned last month that she has celiac (oddly enough, her doctors in Germany were clueless and the doctors HERE in the U.S. diagnosed her--go figure!), but even though all of her tests came back positive for celiac, her gastro has placed her on a gluten challenge in order to undergo an endoscopy. The doctors at the celiac forum told her that was crazy! I personally don't believe in gluten challenges--I believe that the damage that could possibly result is simply not worth it.

Oh, and IrishHeart, Dr. Tom O'Bryan was at the forum, and he was far and away the best presenter of the day. I'll have to report to you what I learned!

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My experience after being gluten free for four weeks before biopsy, it turned out negative.

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The doctors at the celiac forum told her that was crazy! I personally don't believe in gluten challenges--I believe that the damage that could possibly result is simply not worth it.

Neither do I, but this is just my opinion and I am no doctor.

Some doctors still require it for a diagnosis, however.

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Guidance in the UK is 6 weeks gluten challenge, with at least one gluten full meal a day e.g. based mainly on pasta.

My doctor tested me after one week then the lab lost my results. But that is another story.

I think I would say stay on gluten if you haven't already come off, but not sure it is always good to go back on to challenge.

I guess it is all down to individual circumstances.

What I found useful on this board :

Firstly getting a sense of possible options;

Secondly finding a way to get through when what I wanted to do didn't work out.

There is, in my view, no shame in self diagnosis. There are, however, some disadvantages.

In the final assessment what matters is finding out if gluten-free is your route.

Taking the journey with the good folks here is a bonus.

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Not long ago I wrote The University of Maryland Center for Celiac Research http://www.celiaccenter.org/ asking them these questions:

What is the recommended number of weeks or months a person should be eating gluten in order to have the celiac blood panel after having been eating gluten free?

Does it matter as to the length of time the person has been eating gluten free?

What amount of gluten should the person be ingesting for the challenge.

All of the above questions pertain to adults.

**************************************************************************

This was their reply:

Unfortunately there is no accurate answer to these questions. It tends to differ person to person. What we usually recommend is 6-8 weeks of eating gluten before testing. However, if you have been on a gluten-free diet for a year or more, then more time may be needed

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squirmingitch

That is really helpful info, great stuff. Glad to see it ties up with what I was told, I have been getting a bit paranoid and confused!!

Thanks for sharing

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Now, remember, that question was based on the celiac blood panel & I did not specifically ask them about the challenge time for the endoscopy sooooo.......

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"As for how much gluten each day - base it on how much you can tolerate, but at least the equivalence of 2 slices of gluten-containing bread per day."

Thank you!

This is very helpful.

I've been recommending a slice or two based on what I had read from the different celiac centers that have their recommendations listed on their websites - great to have a direct response from University of Maryland.

The letter also reinforces the unpredictable nature of any gluten challenge.

Thanks again Squirmingitch :)

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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.com/articles/979/1/Challenging-the-Gluten-Challenge---By-Dr-Ron-Hoggan-EdD/Page1.html

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IH

That's so helpful. Will print out and take to my doctor when I discuss my recent biopsies

Thanks (again)

Mw

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IH

That's so helpful. Will print out and take to my doctor when I discuss my recent biopsies

Thanks (again)

Mw

I was stunned to read the words "5 years"--granted that may be a small number of people.

This is why some people say "Gluten up" as much as you can tolerate.

Likewise, it may take a long time for healing the damage.

My GI says he will not be surprised if he sees residual damage in me next Spring (after 2.5 years) when he biopsies me. I was sick for a long time, so who knows? I still struggle some days, but I know I am healing, otherwise, I would not be typing this right now and I would still have major brain frogs. ;)

( I told Linda that "brain frog" typo cheered up a lot of people and she has a good sense of humor. Not easy for newbs to laugh when you guys feel so lousy.)

Good luck, hon.

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THANK YOU IH for that MOST informative information & the link to the article!!!!!!!! This should clear up a lot of confusion on the subject. This strengthens my opinion that one wants the VERY BEST chance at getting a positive biopsy.smile.gif And since individuals vary so widely it would be, in my opinion, IMPERATIVE that they stay on gluten just as long as they can in order to facilitate a positive result; especially if they have been gluten light or gluten free for any time.

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I was gluten light for 2 months then did a 2 week gluten challenge and that was plenty to show positive results on the bloodtest.

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This was on the of Chicago Celiac Center Facebook page. The first sentence was the original post and the second part was thier "comment" in response to a question. The only way to prove this is for you to go on Facebook and check it out, sorry.

'During a 12-week gluten challenge, only a cracker or a 1/2 slice of bread need be consumed each day.

The University of Chicago Celiac Disease Center A gluten challenge is used to trigger the immune system prior to testing (blood or biopsy) so that there are measurable results to test. It should be done only under the supervision of a medical professional, for severe results can mandate a shortened challenge.

October 10 at 11:47am · Like · 1'

When the U of Chicago Celiac ct sent me a postcard to remind me of the free screening this weekend, the card said a regular gluten diet for 3 months. Sorry, can't link to my kitchen counter. :D

I know for myself, I was gluten-free for 3 months and, while my antibodies had dropped dramatically, I was still "high". I would not say that is normal for everyone. I think the point of the "gluten challenge" is to make enough anitbodies or intestinal damage to show on the test you are having. I suspect that the Celiac center at Chicago is trying to give the most people the best chance of getting a positive test.

I did notice that they said to do the challenge with the supervision of a doctor. Hopefully, if the challenge is too, hard the doctor would see that and help you diagnose from there.

Edited to correct multiple typos. I guess the point of reading glasses is to wear them when typing and reading. ;0

Lert me edit this to say that they may have put this info on thier website, but I don't have the time right now to look. If I get a chance later, I will post a link, if I find one. They keep changing thier website, adding and deleteing.

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I have a question about a gluten challenge: Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?

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

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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.

Ok. Your right. She didn't say "diagnosed" she asked if she would get a negative biopsy. Most of our info would say "diagnosed by a biopsy" because, really, who would just do the endo for fun, not wanting more diagnostic info? Why would she care about a false negative if she didn't think it was for diagnosis? More important : Why are we fighting over her choice of wording?

How many people that have been on here , over the years, have had postive blood but a negative biposy? How many of them have been told, you don't have Celiac with a pos blood and a negative biopsy? My answer- an unscientific "lots". If someone had the time, they could go back and complie the numbers.

I believe my info from the Univ of Chicago FB referred to both blood and endo. I'll go up and re-read it to see.

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I have a question about a gluten challenge: Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?

No one can know whether eating gluten light would lead to a false negative - there are unknown factors in each diagnosis. We can only suggest what we believe gives the best possible chance for accurate testing results.

As everyone can read in all the recent posts regarding "Gluten Challenge" there are varying opinions of the procedures needed to give the best possible chance for accurate blood tests and endoscopic biopsy - even among the top celiac research centers. This is not likely to change quickly.

Can we present our personal opinion of the best course of action for folks and leave it up to them to decide which makes the most sense for their situation?

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Here is the review of celiac center recommendations for gluten challenge that I posted in a similar thread two months ago:

UCSD = 4-6 weeks, no specific amount of gluten was referenced

University of Chicago = 12 weeks, 1/2 slice gluten bread per day

Beth Israel = 4-6 weeks with increasing amounts of gluten

Mayo Clinic and University of Maryland = could not find a time associated with challenge - maybe they don't want to put it in writing because it remains unclear

Did find one reference for Mayo 2010 that referenced 4 weeks on 4 slices of whole wheat bread.

And we'll add this response from University of Maryland provided by Squirmingitch:

Unfortunately there is no accurate answer to these questions. It tends to differ person to person. What we usually recommend is 6-8 weeks of eating gluten before testing. However, if you have been on a gluten-free diet for a year or more, then more time may be needed – so yes, the length of time on the gluten-free diet matters. As for how much gluten each day - base it on how much you can tolerate, but at least the equivalence of 2 slices of gluten-containing bread per day.

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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.

Until all doctors are uniform in following the flowchart you state, there can be no assumption of what each doctor will do.

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.

edited for typo

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I am new to the forum and have learned so much already. Thank you to all who have shared their experiences and knowledge I have a question about a gluten challenge: Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?

I have a positive antibody test (Ttg IGA) and was advised by the allergist that ordered the test to go gluten free. This was approximately 4 weeks ago. I went gluten free but not strictly so. I ate many items which may have been cross contaminated as well as eating out with friends on numerous occasions. In reality it was more like I was eating gluten light. My symptoms improved greatly, but I still had some residual pain. I called my allergist and she referred me to a GI doc. At the initial appointment, the GI says he wants to do an endoscopy. I told him I had been off gluten for a month and asked if I needed to start eating it again before the endoscopy. He said yeah, go back on it for 7-10 days. But that just doesn't seem like a adequate amount of time. Any thoughts? Any questions I should ask the GI before the endoscopy? Thanks in advance for any suggestions or commnets.

Welcome Blevois.

I think that the length of this thread may be an indication that there is no clear answer to your question. You asked ...and we are just FULL of opinions. :P You received some good answers.

With positive blood work and success (not full success) going gluten "lite", I would think that you can conclude that you have Celiac Disease, or a pretty conclusive issue with gluten. As many have mentioned, the endoscopy exam may not concentrate on the effective areas and may be inconclusive, regardless of your gluten intake. But you have two out of the three (4?) criteria for Celiac.

The endo exam can also look for the level of damage due to Celiac, as well, check for other intestinal issues that can create issues. I kinda feel it's a good thing when there has been a history of digestive issues. A base-line endo is good. :)

Do what you feel is best for you and when you're done with the endo, go as 100% as you are able and document your recovery.

I look forward to hearing from you again.

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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.

Sorry, Peter, but I needed to answer this question of Tom's!

Yes, Tom, all the up to date blood screening tests available today were there in 2005....except the DGP. That is the newest one of the AGA IgA variety. I was diagnosed in 2005 so that is why I know this. I had the full panel done and was diagnosed via blood work. 2005 was not the Dark Ages....... :lol:

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I fail to see how it would be possible to design a study which would say definitively how much gluten should be consumed and for how long for a gluten challenge biopsy when these are the variables that have to be taken into consideration:

Has there been a positive blood test?

How long has subject been gluten free?

Was there a previous period of gluten free eating?

Are subject's symptoms GI only and/or neurological? (making positive less likely, anecdotally)

Number of years subject has experienced possible celiac symptoms.

You then have to put all these together and decide:

How much gluten is enough to cause damage?

How long does it take to cause damage?

Not to mention, you have to factor in the skill of the doctor performing the biopsy, the number of samples taken, the uniformity (or lack of it) of the damage, and the skill of the pathologist reading the slides.

I am no scientist, but it seems to me that we are working with far too many variables here and,as has been said before, you should do the kind of challenge that will give you the best chance of an accurate test result using the best doctor you can find. IMHO

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