Testing After Being Gluten Free

[GFinDC]

Thanks for looking that info up Lisa. It seems there is no agreement on the required time for a gluten challenge among the main celiac centers in the USA. Kind of a basic thing that it seems like they could agree on. Some say 3 months, others say a month and half. And the recent research suggests it may be possible to detect celiac reactions with a much shorter timeframe, possibly a couple weeks. But there is no consensus I can see among the leading celiac centers right now on a duration requirement.

Tom, I think this is an important point you raised and it would be good if we could work together somehow to change that situation. Having the forum members change their recommendation is fine, but the medical community are the ones doing the tests and they are the ones who need to change.

Maybe we could start a letter writing campaign to the various celiac groups to encourage them to work the issue with the medical community? I am willing to write a letter (email) to a few of them. But numbers speak louder so a few more people writing about it might help.

It seems silly to have such large discrepancies in testing recommendations.

[GottaSki]

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

Sorry your thread got hijacked - but it does point out some of the difficulties in obtaining a celiac diagnosis.

Common sense tells me that eating more gluten should cause more of a reaction, but I have no references to quote on that.

Have you started the challenge - any adverse reactions to gluten? Guess part of the equation will be how much gluten you can eat. Not sure what led you to look into celiac and trial eating gluten-free or whether you had any improvement during the weeks you were gluten-free.

If you are still planning to have blood tests after a few weeks, I'd suggest you eat similarly to the one reference from Mayo of 4 slices whole wheat bread for 4 weeks. If you are going to do a longer challenge a slice of bread per day seems to be enough.

Maybe we could start a letter writing campaign to the various celiac groups to encourage them to work the issue with the medical community? I am willing to write a letter (email) to a few of them. But numbers speak louder so a few more people writing about it might help.

It seems silly to have such large discrepancies in testing recommendations.

Good idea...curious what you are thinking of writing...it would be nice if there was consensus amongst Celiac Centers with regard to testing, but even more important that primary doctors throughout our medical system become educated on all the symptoms of Celiac Disease along with correct testing procedures. It is amazing that not even all gastroenterologists are properly educated with regard to Celiac. Since what I'd like fixed is a bit too large to tackle - a good start would be getting celiac centers to agree on testing procedures - at least that can potentially trickle down to other docs.

[tom]

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

The studies I've seen (including those I've referenced in this thread) are recommending moderate doses.

2-3g/day is the equivalent of around 1 slice of bread.

One study compared 2 levels of gluten/day & the other had 3.

[tom]

...

Common sense tells me that eating more gluten should cause more of a reaction, but I have no references to quote on that.

...

Of course the question isn't whether more gluten makes someone sicker, it's how much makes for a valid test.

And sorry but I can't help but throw in that Common Sense tells ppl that heavier things fall faster.

[justlisa]

Seems to me that the advice of 3 months (by many members here and other forums I visit) for an increased chance of "accurate" test results is based on the experience of members AND the experience of others (many folks have stories of "false" negative testing).

As I've said before, I believe that the current testing is seriously flawed...and that, at some point, "they" are going to figure that out...

Personally, I could never consider a gluten challenge...I want to live... But, if someone I know is considering it, I'll recommend at least 3 months...

Just my opinion...

[GFinDC]

Hi Peppaminto,

Sorry we have steered your thread so far from a simple answer. Just maybe the answer will change soon.

Hi Lisa, Tom,

Here's a draft letter. Just a draft, can probably use some fixing up. Suggestions welcome.

August 16, 2012

Celiac Support Group

Dear : ??

I am writing to request that (celiac support group) consider advocating for a standard gluten challenge recommendation among the medical community in the USA.

A review of web sites for major celiac centers in the USA shows that gluten challenge recommendations range from 4 to 12 weeks duration, and the amounts of gluten required vary also.

Recent estimates show there are around 2 million ? undiagnosed celiacs in the USA. Assuming that all 1 million celiacs were put in a gluten challenge for testing, the duration total weeks would vary from 4 million weeks using one recommendation up to 12 million weeks using the longest recommendation. Converting to hours shows 672,000,000 hours required for all 1 million to do the shortest recommended gluten challenge or 1,848,000,000 hours for the same group to do the longest recommended gluten challenge. That difference amounts to 1,176,000,000 hours of additional suffering on the part of these patients.

Obviously 1 million people will not begin a gluten challenge anytime soon. But the goal is to get as many people tested as possible. So the recommendations do have an effect on quality of life for people every day.

It seems possible that gluten challenge duration could be shortened to 4 or maybe 6 weeks as currently recommended by some celiac centers. In addition new testing methods are being researched which may reduce challenge times to a couple of weeks in the future.

I request your group pursue this gluten challenge duration issue with the medical community and promote a recommended duration that is the shortest feasible. Thank you for your time and consideration. I look forward to hearing from you!

Sincerely,

Enclosure

P.P.S. This is all Tom and Lisa's fault.

OK, I am not sure what the current undiagnosed club number is. ! million, or 2 million, or 3 million?

[tom]

Seems to me that the advice of 3 months...

This does specifically highlight my point. People HAVEN'T been just giving advice, they've been asserting that w/out 3-4 months there's "no hope of dx" & "will NOT" get a positive or it takes 3-4 months "to have any chance" of a positive. (Quotes from other threads"

This thread had

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.

These assertions are not true. (It'd be true to say "there's a chance 2-3wks won't be enough")

Do ppl think it's ok that the statements aren't literally true, chalking it up to & forgiving it as an effective use of hyperbole?

How do those same ppl view statements like "just a crumb can trigger reactions" or "your colander can have hidden gluten no matter how well you washed it"?

The posts I've replied to AREN'T just advice I disagree with. They are claims of an absolute which is easily shown to be false.

There IS (an abundance of) hope for dx w/ less than 3 months GC.

It's NOT impossible to get the correct results after the gluten challenge the Dr scheduled, whether he/she said 4, 6, 8 or even 2 weeks.

Seems to me that the advice of 3 months (by many members here and other forums I visit) for an increased chance of "accurate" test results is based on the experience of members AND the experience of others (many folks have stories of "false" negative testing).

As I've said before, I believe that the current testing is seriously flawed...and that, at some point, "they" are going to figure that out...

Personally, I could never consider a gluten challenge...I want to live... But, if someone I know is considering it, I'll recommend at least 3 months...

Just my opinion...

Recommend away! Multiple times I've suggested rephrasing the basic premise into something that's not false.

If it comes out as potentially implying that less than 3 months is useless, I'll hope I see it so I can add my opinion that all the studies concluding otherwise are correct.

[tom]

Hi Peppaminto,

Sorry we have steered your thread so far from a simple answer. Just maybe the answer will change soon.

...

Wasn't peppa's question "is 2 or 3 weeks enough?".

The simple answer is "it certainly could be", not a wholly unsubstantiated "no".

With a few exceptions, I thought most of the posts ARE discussing this.

Isn't this the right process when the answers aren't simple?

I even thought a thread titled "Testing After gluten-free" was a fine place to discuss post-gluten-free gluten challenge & testing specifics.

[GottaSki]

GFinDC

Love the calculation - don't even want to think how many days, hours and minutes have been lost due to mis-diagnosis of Celiac -- it took 22 million minutes just for me to get diagnosed -- okay I have had some pretty great minutes in there despite severe symptoms

[Peppa-minto]

I have mostly easy to live with symptoms... Dizziness, fatigue, constipation, bloating, gas, loose stools... My sister has celiac which is why I suspect this is where my symptoms come from. I am on a fairly high gluten diet, much more than just four slices of bread. Definately felt better gluten free, but I can manage a few weeks eating this way... I just don't k ow of my eating a lot of gluten makes a difference.

[Peppa-minto]

By the way, I dont mind the discussion going on as in the midst of it I am still receiving answers so that's fine by me

[squirmingitch]

GFin DC, I think your letter needs to be very specific as to what kind of gluten challenge you are asking about. Blood? Or GI? There is a big difference. Tom began by quoting a GI study result. The op is going for BLOOD testing. The study Tom referenced shows that villi can be influenced AND dx'd in the short time frame of 14 days but we here know that with all but a few exceptions; testing in the real, every day world, for celiac BEGINS with the celiac panel NOT an endoscopy.

So, we need to be specific as to the type of gluten challenge we are asking for them to agree upon.

[squirmingitch]

And since we are on this subject.......

I posted this thread not long ago. A PubMed abstract of a study done by UofC.

https://www.celiac.com/forums/topic/95523-do-gis-adhere-to-dx-guidelines-for-celiac/page__p__815627__fromsearch__1#entry815627

Of course, this only deals with the GI's.

[Lisa]

... we here know that with all but a few exceptions; testing in the real, every day world, for celiac BEGINS with the celiac panel NOT an endoscopy.

So, we need to be specific as to the type of gluten challenge we are asking for them to agree upon.

My diagnosis, in my real, everyday world, began with an endoscopy exam. No need to be specific, when nothing is specific.

[tom]

GFin DC, I think your letter needs to be very specific as to what kind of gluten challenge you are asking about. Blood? Or GI? There is a big difference. Tom began by quoting a GI study result. The op is going for BLOOD testing. The study Tom referenced shows that villi can be influenced AND dx'd in the short time frame of 14 days....

I already addressed this once earlier in the thread.

EVERY study I linked to did a blood test at EVERY endpoint.

How did this fact not get through the 1st time? Sure that sounds rude but look at what I'm being accused of here.

I'm being accused of trying to use completely irrelevant data to prove a point & it's unequivocally insulting.

You wouldn't even have to actually read the studies to know this, as they all have either 'serological' or 'antibody response' in their titles!

(FYI to newer readers, serological = blood testing)

On page 1 of this thread, in the 3rd reply to the OP's question I quoted from Open Original Shared Link

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

Does anyone else think the linked studies didn't do blood tests & aren't applicable? I'll go through it as many times as necessary when I'm being accused of outright dishonest arguments.

[GottaSki]

And sorry but I can't help but throw in that Common Sense tells ppl that heavier things fall faster.

Ok...perhaps I should have said IMHO...but come on

I can help myself but still choose to point out that the wording of your posts indicate no regret in pointing out problems in the wording of my posts.

[squirmingitch]

My diagnosis, in my real, everyday world, began with an endoscopy exam. No need to be specific, when nothing is specific.

Lisa, please re-read what i wrote & you quoted ----- I said "all but a FEW exceptions" --- that would be YOU.

And YES, we DO need to be specific. We are trying to get a consensus from the major celiac centers on what would be the time duration as well as the amount of gluten to be consumed for a gluten challenge in re: the BLOOD panel!

Somehow you always seem to miss the point. And when you reply you hardly ever make sense. Write in whole sentences explaining what the heck you are trying to say please.

[tom]

Ok...perhaps I should have said IMHO...but come on

I can help myself but still choose to point out that the wording of your posts indicate no regret in pointing out problems in the wording of my posts.

Is there a word missing in that last sentence?

I really don't know what you're referring to.

My issues w/ wording stem from my acknowledgement that phrases like "will not" & "might not" aren't equivalent & that sentences can change from True to False or vice-versa when the phrases are subbed for each other.

Every recent study I've found proves that celiacs CAN be dx'd by BLOOD earlier than 3 months into a GC.

[GottaSki]

Tom-

I was speaking directly to your comment which I referenced in my last post -

"And sorry but I can't help but throw in that Common Sense tells ppl that heavier things fall faster."

I should have kept the thought in my last post to myself - as it is not relevant to this thread.

-Lisa

[squirmingitch]

I already addressed this once earlier in the thread.

EVERY study I linked to did a blood test at EVERY endpoint.

How did this fact not get through the 1st time? Sure that sounds rude but look at what I'm being accused of here.

I'm being accused of trying to use completely irrelevant data to prove a point & it's unequivocally insulting.

You wouldn't even have to actually read the studies to know this, as they all have either 'serological' or 'antibody response' in their titles!

(FYI to newer readers, serological = blood testing)

On page 1 of this thread, in the 3rd reply to the OP's question I quoted from Open Original Shared Link

Does anyone else think the linked studies didn't do blood tests & aren't applicable? I'll go through it as many times as necessary when I'm being accused of outright dishonest arguments.

But Tom, the study said & I pointed that out but you either missed it or chose to ignore it where it says those serological tests DID NOT REACH STATISTICAL SIGNIFICANCE. That's a pretty strong statement. AND it further said that they observed the TIMING OF INTESTINAL CHANGES DID NOT SIGNIFICANTLY CORRELATE WITH THOSE OF SEROLOGY, SYMPTOMS, OR LAMA.

What do you not understand about that? Or do you refuse to? The serology was NEGATIVE Tom. The serology changed but NOT enough. This is the entire point in this thread.

And I'm sorry if that sounds rude but look what I'm being accused of here. I'm being accused of trying to use completely irrelevant data to prove a point & I AM insulted!

[Lisa]

Somehow you always seem to miss the point. And when you reply you hardly ever make sense. Write in whole sentences explaining what the heck you are trying to say please.

I'm sorry that you find it a difficulty understanding my posts. But..to address my point....

Celiac Disease is found, often as secondary diagnosis with over 300 symptoms. No one is the same. There are no consistencies. The methods of diagnoses can vary immensely. I am not the exception.

Hopefully, the testing process can be refined in the years to come.

[justlisa]

My diagnosis, in my real, everyday world, began with an endoscopy exam. No need to be specific, when nothing is specific.

You say diagnosis instead of testing. So, you didn't have blood work before endo?

Interesting... I've not seen that...

[tom]

But Tom, the study said & I pointed that out but you either missed it or chose to ignore it where it says those serological tests DID NOT REACH STATISTICAL SIGNIFICANCE. ...

...

Again?. .. .this was answered the 1st time you said it. This time you left out the most crucial phrase "by day 14".

From page1 of this thread.

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."

To use your phraseology (reluctantly) did you "choose to ignore" the fact that none of these studies stops at 14 days?

Or are we "choosing to ignore" that 28 days is far less than 3 months?

Are you still claiming celiacs don't get dx'd in under 3 months despite the very study you keep cherrypicking (re day 14) clearly stating that antibodies increase "markedly by day 28"?

Sheesh

[Lisa]

You say diagnosis instead of testing. So, you didn't have blood work before endo?

Interesting... I've not seen that...

You say diagnosis instead of testing. ????

I did NOT have blood work before my endo. As I stated before, my endo and biopsy offered me a diagnosis. I'm certain I'm not the only one.

[justlisa]

You say diagnosis instead of testing. ????

I did NOT have blood work before my endo. As I stated before, my endo and biopsy offered me a diagnosis. I'm certain I'm not the only one.

It was a sincere question... I really haven't come across that before...

I was just looking for clarification because "testing" was being discussed, but you said "diagnosis". From what I've been reading, very few get a "diagnosis" with positive blood work, anyway...

As for the rest of the discussion: There are SO MANY sick people who are struggling and unable to get an official diagnosis. It would be very hard, for me, to advocate a position (shorter GC) when I see so many who can't get a diagnosis when they've been consuming gluten all their lives. I would need to see some major advances in testing. Just my thoughts.