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Testing After Being Gluten Free


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#16 tom

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Posted 15 August 2012 - 01:17 PM

.... 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?
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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

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#17 GottaSki

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Posted 15 August 2012 - 01:27 PM

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:
http://www.curecelia...-celiac-disease
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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 :)


#18 squirmingitch

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Posted 15 August 2012 - 02:54 PM

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.



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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.

 


#19 tom

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Posted 15 August 2012 - 04:48 PM

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]
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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

#20 kareng

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Posted 15 August 2012 - 05:04 PM

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.
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#21 GottaSki

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Posted 15 August 2012 - 05:07 PM

[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:

http://www.cureceliacdisease.org/faqs

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.
  • 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 :)


#22 Lisa

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Posted 15 August 2012 - 05:09 PM

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. :rolleyes:
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#23 squirmingitch

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Posted 15 August 2012 - 05:14 PM

You're talking about an entirely different thing.Posted Image
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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.

 


#24 tom

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Posted 15 August 2012 - 09:41 PM

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. ...
...

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

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.
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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

#25 Peppa_minto

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Posted 16 August 2012 - 11:00 AM

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

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Posted 16 August 2012 - 11:06 AM

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.
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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

#27 GottaSki

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Posted 16 August 2012 - 11:30 AM

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.
  • 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 :)


#28 tom

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Posted 16 August 2012 - 12:24 PM

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.
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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

#29 tom

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Posted 16 August 2012 - 12:31 PM

...
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.
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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

#30 justlisa

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Posted 16 August 2012 - 01:03 PM

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...
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