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Testing After Being Gluten Free


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#31 GFinDC

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Posted 16 August 2012 - 01:30 PM

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?
  • 0
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

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#32 tom

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Posted 16 August 2012 - 01:56 PM

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.
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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

#33 tom

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Posted 16 August 2012 - 02:09 PM

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.
  • 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

#34 GottaSki

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Posted 16 August 2012 - 02:23 PM

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 :P
  • 1

-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 :)


#35 Peppa_minto

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Posted 16 August 2012 - 03:10 PM

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.
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#36 Peppa_minto

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Posted 16 August 2012 - 03:13 PM

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
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#37 squirmingitch

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Posted 16 August 2012 - 03:29 PM

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.
  • 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.

 


#38 squirmingitch

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Posted 16 August 2012 - 03:46 PM

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

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

http://www.celiac.co...__1#entry815627

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

 


#39 Lisa

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Posted 16 August 2012 - 03:54 PM

... 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. ;)
  • 1
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#40 tom

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Posted 16 August 2012 - 04:08 PM

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! :rolleyes:

(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 http://gut.bmj.com/c...302196.abstract

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


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.
  • 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

#41 GottaSki

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Posted 16 August 2012 - 04:08 PM

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 :blink:

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.
  • 2

-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 :)


#42 squirmingitch

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Posted 16 August 2012 - 04:09 PM

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.
  • 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.

 


#43 tom

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Posted 16 August 2012 - 04:22 PM

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

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.
  • 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

#44 GottaSki

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Posted 16 August 2012 - 04:44 PM

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
  • 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 :)


#45 squirmingitch

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Posted 16 August 2012 - 05:10 PM

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! :rolleyes:

(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 http://gut.bmj.com/c...302196.abstract


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!
  • 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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