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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Much Gluten, For How Long, Must You Eat Before Testing?
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27 posts in this topic

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).

...

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?

Edited by psawyer
Added explanatory note about topic split
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Here's what the Mayo Clinic says:

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

http://www.mayomedicallaboratories.com/mediax/tests/celiac/celiac-patient-brochure.pdf

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.

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

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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.

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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.

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... 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.

Here's what the Mayo Clinic says:

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

http://www.mayomedicallaboratories.com/mediax/tests/celiac/celiac-patient-brochure.pdf

...

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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.

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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.

:)

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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.

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

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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! :blink: )

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

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

:ph34r:

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

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

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

:lol:

:lol:

:lol: ...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. :P I have seen Tom's VERY large shoes... :blink:

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

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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.

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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.

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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.

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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.)

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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.

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.

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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.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.

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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.

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.

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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.

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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:

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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.

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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.

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. 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JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. 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Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. 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If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. 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    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
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