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Gluten Challenge


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#1 Blevois

 
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Posted 13 October 2012 - 12:49 PM

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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#2 tom

 
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Posted 13 October 2012 - 04:24 PM

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, 16 October 2012 - 06:35 PM.
Removed comment at the end.

  • 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

#3 GottaSki

 
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Posted 13 October 2012 - 07:04 PM

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 :)
  • 3

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 rosetapper23

 
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Posted 13 October 2012 - 07:59 PM

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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#5 shadowicewolf

 
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Posted 13 October 2012 - 08:08 PM

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

 
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Posted 14 October 2012 - 06:04 AM

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.
  • 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


#7 Celiac Mindwarp

 
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Posted 14 October 2012 - 08:08 AM

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.
  • 1
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#8 squirmingitch

 
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Posted 14 October 2012 - 09:09 AM

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 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.




Elizabeth Fouch

Development Associate

Center for Celiac Research

20 Penn Street, Rm S303B

Baltimore, MD 21201

T. 410-706-5516

F. 410-706-5508

www.celiaccenter.org











  • 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.

 


#9 Celiac Mindwarp

 
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Posted 14 October 2012 - 09:13 AM

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
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#10 squirmingitch

 
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Posted 14 October 2012 - 09:20 AM

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.......
  • 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.

 


#11 GottaSki

 
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Posted 14 October 2012 - 09:27 AM

"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 :)
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 IrishHeart

 
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Posted 14 October 2012 - 09:51 AM

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
  • 2

"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


#13 Celiac Mindwarp

 
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Posted 14 October 2012 - 10:19 AM

IH
That's so helpful. Will print out and take to my doctor when I discuss my recent biopsies
Thanks (again)
Mw
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#14 IrishHeart

 
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Posted 14 October 2012 - 10:56 AM

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.
  • 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


#15 squirmingitch

 
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Posted 14 October 2012 - 12:22 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. This strengthens my opinion that one wants the VERY BEST chance at getting a positive biopsy.Posted Image 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.
  • 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.

 





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