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Testing After Being Gluten Free


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#1 Peppa_minto

 
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Posted 14 August 2012 - 09:27 AM

Without getting too much into my story, I went gluten free about three to four weeks ago, a slip up or two along the way, and am now seeking testing. My doctor gave me the paperwork to get tested and said to go to the lab in two to three weeks, eating gluten in between. I'm going to not hold back and eat like I used to... But I don't know if two to three weeks is enough. Maybe since I haven't been gluten free very long?
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#2 squirmingitch

 
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Posted 14 August 2012 - 10:11 AM

No, 2-3 weeks is not long enough after having been gluten-free for a month. Posted Image Sorry. Can you push back the lab date? It doesn't sound like there is a firm appointment date. You need to have been actively consuming gluten for 3 months @ equivalent of 3-4 slices of bread per day.
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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.

 


#3 GottaSki

 
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Posted 14 August 2012 - 10:15 AM

No, 2-3 weeks is not long enough after having been gluten-free for a month. Posted Image Sorry. Can you push back the lab date? It doesn't sound like there is a firm appointment date. You need to have been actively consuming gluten for 3 months @ equivalent of 3-4 slices of bread per day.

Ditto :)
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-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 tom

 
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Posted 14 August 2012 - 01:07 PM

No, 2-3 weeks is not long enough after having been gluten-free for a month.
...
You need to have been actively consuming gluten for 3 months @ equivalent of 3-4 slices of bread per day.

Not true & I really wish celiac.com forum members would stop saying this.
Here's one recent link. http://www.celiac.co...ease/Page1.html

"The team concludes by noting that a 14-day gluten challenge at or above 3 g of gluten/day triggers cellular, tissue, and blood changes in most adults with celiac disease."

Note that I'm not saying ppl should only do 2wks. I'm saying that it's false to say a challenge "needs" to be months.

The researchers who are designing experiments to test 'celiac pills' are running 6wk challenges w/ 2g/day, around ONE slice of bread. http://www.celiac.co...ents/Page1.html

2 wks here:
Conclusions 14 day GC at ≥3 g of gluten/day induces histological and serological changes in the majority of adults with coeliac disease. These data permit accurate design of clinical trials and indicate that many individuals will meet coeliac diagnostic criteria after a 2-week GC.
http://gut.bmj.com/c...302196.abstract

They used 2 diff levels of daily glutening and concluded "no difference betw the doses", which were 3g/day & 7.5g/day.
3-4 slices of bread/day is overkill when ~1 slice/day will do.

I really don't mean for this to look like I'm unloading on you squirmy, it's just that this 3 or 4 MONTHS long challenge somehow became a popular notion on this forum & it's just plain wrong and we need to stop repeating it.
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>>>>>>> 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

#5 GottaSki

 
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Posted 14 August 2012 - 01:31 PM

I have been operating off the information my celiac doctor at UCSD provided during my diagnosis. He was adamant that the testing would not be accurate if I had been gluten-free for even a couple days in the months prior to testing.

I had read the two-week study performed on those with biopsy proven celiac with results based on further biopsy. I was not convinced that two weeks is long enough for the antibodies to be reflected in blood work -- but will definitely read a bit more before I say that a three month challenge is the best option again.

Thanks Tom :)
  • 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 :)


#6 squirmingitch

 
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Posted 14 August 2012 - 04:03 PM

Thank you for the information & links Tom & I will agree that this subject requires further study & research by those who do such. And the study you cite says there were GI changes enough to make a dx. But let's examine further. The study involved 20 ppl. 1 of which was washed out due to not possessing the accepted genetic markers for celiac disease. So now we have 19 ppl. All of those 19 ppl were dx'd by biopsy by this team. And let's remember that this team IS doing a research project & therefore are being extremely careful in measurements & documentation. They are not your average GI whom we know is rather reluctant to even perform the biopsy in the first place & then only after the blood panel turns up positive. Plus, this team performed a biopsy at day 3 & again at day 14 which never happens in real life. So this team was measuring before, early on & at the end. They had careful measurements of villous height to crypt depth for comparison on 3 occasions during the study. If this type of measuring were done on every potential celiac out there in the real world by your average GI's then I'm sure we would have much more accurate dx's resulting.
Now, what the links you posted DO NOT state is that:

Patients also experienced a marked increase in levels of antibodies against tissue transglutaminase and deamidated gliadin peptides between baseline and day 14, although this did not reach statistical significance. Levels continued to rise after the challenge was completed.
And:
The researchers observe that the timing of intestinal changes did not significantly correlate with those of serology, symptoms, or LAMA.
"If we accept that duodenal mucosal damage is the gold standard marker of coeliac disease activity, then it is clear that, despite out encouraging findings, improved non-invasive markers of coeliac disease activity are greatly needed for use in patient management and clinical research," emphasize Leffler et al writing in Gut.

Finally, noting that a minority of patients had no significant response to the 2-week gluten challenge, and that gluten sensitivity varied significantly among the group, they conclude: "An accurate, non-invasive measure of coeliac disease activity would be valuable in many respects and may allow the strictness of the gluten-free diet to be personalised without negative consequences. "




The above from: http://www.medwire-n...c_response.html

The op stated that they are going to the lab in 2 - 3 weeks for the test. Well, that obviously means the blood panel not an endoscopy w/ biopsy. So, the study you reference is not applicable in this particular instance.

The researchers themselves admit the need for improved, accurate, non invasive markers for ceilac disease.

And I think ALL of us will agree on that point.











  • 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.

 


#7 Peppa_minto

 
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Posted 14 August 2012 - 07:26 PM

I guess the best course of action for me would be to do the gluten challenge for three weeks like he asked me to do and if it comes back negative ask if I can do it again after another month or two? Does that seem doable?
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#8 kareng

 
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Posted 14 August 2012 - 08:36 PM

I guess the best course of action for me would be to do the gluten challenge for three weeks like he asked me to do and if it comes back negative ask if I can do it again after another month or two? Does that seem doable?



Something to think about: Will your insurance pay for you to repeat a $300 + lab test that was negative a couple of months before?
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#9 tom

 
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Posted 14 August 2012 - 09:56 PM

Thank you for the information & links Tom & I will agree that this subject requires further study & research by those who do such. And the study you cite says there were GI changes enough to make a dx. But let's examine further. The study involved 20 ppl. 1 of which was washed out due to not possessing the accepted genetic markers for celiac disease. So now we have 19 ppl. All of those 19 ppl were dx'd by biopsy by this team.

You mean the researchers using "biopsy-proven celiacs" for the study?
Anything else only muddies the waters.

And let's remember that this team IS doing a research project & therefore are being extremely careful in measurements & documentation. They are not your average GI whom we know is rather reluctant to even perform the biopsy in the first place & then only after the blood panel turns up positive. Plus, this team performed a biopsy at day 3 & again at day 14 which never happens in real life. So this team was measuring before, early on & at the end. They had careful measurements of villous height to crypt depth for comparison on 3 occasions during the study. If this type of measuring were done on every potential celiac out there in the real world by your average GI's then I'm sure we would have much more accurate dx's resulting.

Not sure why so much focus on the biopsy part since they also took blood at each interval.
Of course the study is done w/ great care. Anything less diminishes its worth.
BTW nothing I've seen on Vh/CrD ratio has made it seem that measuring the parameters is particularly difficult. It's replacing the somewhat subjective Marsh scale - about damn time, I say.
Regarding potential celiacs' biopsies, a FAR greater issue than any Vh/CrD measurement difficulty (under debate) would be that . .. .what was it recently reported on c.com . .I think something like 40% of the biopsies took 4 or more samples ... aha here it is
"Yet three years after the review was published, Dr. Lebwohl and colleagues found that only 37% of patients who underwent duodenal biopsies had an adequate number of specimens retrieved (Gastrointest Endosc 2011;74:103-109). The same study found celiac disease diagnosis doubled when biopsies met the recommended guidelines."
http://www.celiac.co...endoscopy-news/

But anyway, as you write later, the OP is probably having blood tests, going by the use of the word 'labs'.



Now, what the links you posted DO NOT state is that:

[font=Verdana, Arial, Helvetica, sans-serif][size=2]Patients also experienced a marked increase in levels of antibodies against tissue transglutaminase and deamidated gliadin peptides between baseline and day 14, although this did not reach statistical significance.

I'm not finding that exact line right now, but it's a good thing they continued through to 28 days.

"Antibody titres increased slightly from baseline to day 14 of GC but markedly by day 28."



...
The op stated that they are going to the lab in 2 - 3 weeks for the test. Well, that obviously means the blood panel not an endoscopy w/ biopsy. So, the study you reference is not applicable in this particular instance.

They took blood at every endpoint!
The study is even titled "Kinetics of the histological, serological and symptomatic responses to gluten challenge in adults with coeliac disease"

Anyway, it looks we're ready to stay away from insisting that a challenge "need" be 3-4 months, or that someone "will NOT be dx'd" w/out 3+ months.
Previously I've interjected when the phrases used were "no hope of a pos biopsy w/out 3-4 months challenge" & "to have any chance" of a pos takes 3-4 months.

Here's another study, just in case.
"Small- bowel mucosal changes and antibody responses after low- and moderate-dose gluten challenge in celiac disease"
http://www.ncbi.nlm....les/PMC3240817/
Chart of TG2 antibody levels at day0, then 4, 8 & 12 wks. http://www.ncbi.nlm....0817/figure/F5/
(dang it . .. last time I could embed the chart, but now the nih site messing w/ me w/ a Viewer app)

Again, I'm not recommending anyone do a 2wk or 4wk challenge. For the most part, they'll do what the Dr schedules.
I just don't want our forum claiming that there's no hope, no chance, will NOT dx, etc unless the challenge is 3-4 months.

(Or that a heavy glutening is req'd, because these same studies disprove that) :P
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>>>>>>> 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

#10 Peppa_minto

 
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Posted 15 August 2012 - 02:24 AM

Oh that's true about the cost! I don't know about that.
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#11 Cara in Boston

 
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Posted 15 August 2012 - 05:59 AM

My doctor (at the Celiac Center at BIDMC Boston) said more like 4-6 months.

Some people will test positive after 2 weeks, some won't until after 6 months. It is different for everyone.

If you happen to test positive, you will know. If you test negative, it will NOT mean you do not have celiac disease.

If you only get one opportunity to test, I would wait longer to make sure I had the best odds of it being accurate.

On the other hand, some people with celiac disease ALWAYS test negative anyway, so no amount of time would make a difference.


Cara
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#12 Peppa_minto

 
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Posted 15 August 2012 - 09:38 AM

Well if y insurance won't pay for it, can I pay for it myself?
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#13 kareng

 
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Posted 15 August 2012 - 09:45 AM

Well if y insurance won't pay for it, can I pay for it myself?


If your insurance won't pay for it, you will have to. I think the test for my boys a few years ago were around $300. I have seen people on here say anywhere from $300-500. Probably depends on what all is ordered.

I mentioned the insurance in case you don't have the money to spare. It may just sneak by and the insurance will pay for both sets. You never know. :)
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#14 GFinDC

 
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Posted 15 August 2012 - 10:16 AM

Hi Tom,

Thanks for bringing up the testing / challenge issue. Scott (admin) posted a research link recently about interferon increasing in a short time, something like 10 days on a gluten challenge. It is a new study though, not an established process for doctors to follow. Probably most doctors won't even hear about the research for a year or more, and that's if we push them to read it. It seems to me the celiac advocacy groups could make some impact on this. If they could bring out the new information and research to more doctors testing might change. But it seems like the research is ahead of the actual practice at this point.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#15 GottaSki

 
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Posted 15 August 2012 - 10:39 AM

It is not surprising that this issue remains unclear. As with all things Celiac - every case is different. What is clear that the longer a patient is on gluten for a gluten challenge, the more likely the antibodies will be reflected in the blood. I searched a few Celiac Centers for their recommendations on minimal time for gluten challenge:

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.

Clear as mud ;)

I do still believe 2-3 weeks is not enough. Somewhere between 6 and 12 weeks seems to be the best answer to give the blood tests their best shot at being accurate. I also believe that research time would be better spent on finding more accurate testing rather than finding a specified challenge time so that gluten challenges could be shorter and shall I dare to say it....ACCURATE.
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-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 :)





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