Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Much Gluten, For How Long, Must You Eat Before Testing?
0

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
0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

3

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

3

Share this post


Link to post
Share on other sites




... 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

...

0

Share this post


Link to post
Share on other sites

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.

5

Share this post


Link to post
Share on other sites

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.

:)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined