Testing After Being Gluten Free

[Peppa-minto]

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?

[squirmingitch]

No, 2-3 weeks is not long enough after having been gluten-free for a month. 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.

[GottaSki]

No, 2-3 weeks is not long enough after having been gluten-free for a month. 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

[tom]

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. https://www.celiac.com/articles/22973/1/Histological-Serological-and-Symptomatic-Responses-to-Gluten-Challenge-in-Adults-with-Celiac-Disease/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. https://www.celiac.com/articles/22731/1/Efficacy-Data-from-Phase-2a-Trial-of-ALV003-in-Celiac-Disease-Patients/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.

Open Original Shared Link

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.

[GottaSki]

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

[squirmingitch]

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: Open Original Shared Link

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.

[Peppa-minto]

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?

[kareng]

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?

[tom]

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."

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:

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"

Open Original Shared Link

Chart of TG2 antibody levels at day0, then 4, 8 & 12 wks. Open Original Shared Linkfigure/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)

[Peppa-minto]

Oh that's true about the cost! I don't know about that.

[Cara in Boston]

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

[Peppa-minto]

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

[kareng]

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.

[GFinDC]

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.

[GottaSki]

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.

[tom]

.... 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.

...

Ahh nice. So it shouldn't be controversial at all for us to stop telling ppl they NEED 3-4 months on gluten to have "any chance" or "any hope" of a positive.

I tried to find a U of Chicago GC recommendation before & couldn't find it at all, to much frustration. Did see that they were recruiting for a study which required 3 months.

Can you point me to where you saw that?

[GottaSki]

I tried to find a U of Chicago GC recommendation before & couldn't find it at all, to much frustration. Did see that they were recruiting for a study which required 3 months.

Can you point me to where you saw that?

Here's the link to UOC's take on it:

Open Original Shared Link

[squirmingitch]

Ahh nice. So it shouldn't be controversial at all for us to stop telling ppl they NEED 3-4 months on gluten to have "any chance" or "any hope" of a positive.

I tried to find a U of Chicago GC recommendation before & couldn't find it at all, to much frustration. Did see that they were recruiting for a study which required 3 months.

Can you point me to where you saw that?

Well, Tom, I disagree. The U of Chicago says 12 weeks which IS in fact 3 months. So, no, I won't stop telling ppl they need to do 3 months.

[tom]

One datapoint says they want 3 months & the conclusion is that everyone else is failing every patient?

The word 'need' is the problem. If 'need' were accurate, no one gets dx'd w/ less than what's needed. Celiacs do not need 3 months GC for a positive diagnosis.

There's nothing wrong w/ just saying "if it were me, I'd want to do 3 months to make sure.", but if a new potential celiac's Mayo Clinic GI is scheduling them for 4 weeks, what are the chances they'll say "no gimme 12"?

[Not sure if there's any significance to the UofC link going to ...\archived\faqs & not being in main faqs. Weird at least]

[kareng]

Funny...I just got my postcard from the U of C about the free Celiac blood testing. Not sure how to show you it as proof. It says

"You are eligible for the Blood screening if:

You have been on a gluten-containing diet for at least 12 weeks prior to testing." (then it lists other things like family members, DM, etc)

I would think that 12weeks isn't the smallest amount of time to get a detectable level for some people. Probably the amount of time to give the best chance of getting a positive for most people.

[GottaSki]

[Not sure if there's any significance to the UofC link going to ...\archived\faqs & not being in main faqs. Weird at least]

Simply the UOC's Celiac Center website structure.

Here is the main page for their FAQs:

Open Original Shared Link

If you click any of the categories on the right side of the page it directs you to addresses that contain "\archived" in the string.

I receive the UOC's snailmail newsletter which - like Karen's postcard - referenced the 12 week recommendation as well.

Yes, there can certainly be a positive test in less than 12 weeks - that does not change the concept that 12 weeks gives the best chance for CURRENT testing methods to work.

[Lisa]

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.

Sounds like Tom is a step a head of the PR Department.

[squirmingitch]

You're talking about an entirely different thing.

[tom]

Funny...I just got my postcard from the U of C about the free Celiac blood testing. Not sure how to show you it as proof. ...

...

!! I really don't know what to comment here. You can't really be imagining me thinking "oh she's just lying", can you?

The point of contention is whether forum members should continue to tell ppl that they "have no hope of a pos dx" w/out 3+ months.

What each individual facility does has no effect on whether it's possible or impossible to get a pos dx w/ less than 3 months GC.

If ppl want to still say 3 months is NEEDED, I'll just keep disputing it wherever I come upon it.

If someone says they'd prefer 3 months if it were them, then there's nothing to dispute.

[Peppa-minto]

Does the amount of gluten make any difference for te length of time?