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Is 3 Weeks Long Enough For A Gluten Challenge?


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17 replies to this topic

#1 passionfruit877

 
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Posted 21 April 2010 - 06:43 AM

I saw a GI today who said he doesn't think I have Celiac but said I might as well be tested since I'm only 22. I have been gluten free for 6 months so he asked me to eat gluten for 2 weeks then get a biopsy. The biopsy is actually scheduled for 3 weeks though. I'm not sure what to do. I really want to call and cancel the endoscopy and just say I'm gluten sensitive. I don't really want to eat it. And they scheduled me for a Celiac panel that I can go get done whenever I have time. Is this worth it?
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#2 jerseyangel

 
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Posted 21 April 2010 - 06:49 AM

I saw a GI today who said he doesn't think I have Celiac but said I might as well be tested since I'm only 22. I have been gluten free for 6 months so he asked me to eat gluten for 2 weeks then get a biopsy. The biopsy is actually scheduled for 3 weeks though. I'm not sure what to do. I really want to call and cancel the endoscopy and just say I'm gluten sensitive. I don't really want to eat it. And they scheduled me for a Celiac panel that I can go get done whenever I have time. Is this worth it?

After being gluten-free for 6 months, 3 weeks just isn't enough time to insure an accurate test result. The rule of thumb is to eat the equivalent of 3-4 slices of wheat bread a day for 3-4 months.

I would reschedule both tests for later on--the blood test probably won't be accurate either at this point.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#3 passionfruit877

 
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Posted 21 April 2010 - 07:31 AM

After being gluten-free for 6 months, 3 weeks just isn't enough time to insure an accurate test result. The rule of thumb is to eat the equivalent of 3-4 slices of wheat bread a day for 3-4 months.

I would reschedule both tests for later on--the blood test probably won't be accurate either at this point.


But is it even worth it? And I was confused that he scheduled the blood test and the biopsy at the same time. Shouldn't I just try the blood test and if it comes back positive then do the biopsy? I ate like 3/4 of a piece of bread when I got back and now I'm bloated. He said I had two options, just keep eating gluten free or do the testing. I'm thinking maybe I should just call him and pick option 1.
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#4 ciavyn

 
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Posted 21 April 2010 - 07:57 AM

Hm, I want to say go with your gut, but I think it's already biased! :) I am undiagnosed. So far, I've had no issues. I'm an adult, so I don't need to worry about school lunches or college issues (I am in grad school, and they've been great about it when I'm on campus) and other than that, I have had "gluten sensitivity" put on my medical chart. For me, a diagnosis would require funds and misery that I have not the patience for. So I'm good. But you have to do what you can live with. Good luck!
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Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#5 DebbieM

 
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Posted 21 April 2010 - 08:43 AM

I would give it longer...I just did a 3 month challenge and the results were "suggestive of mild/early" celiac. DR wants me to do 3 more months on gluten and do the endoscopy again!!!!!!! It might depend how long you were gluten free???
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#6 passionfruit877

 
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Posted 21 April 2010 - 09:40 AM

I would give it longer...I just did a 3 month challenge and the results were "suggestive of mild/early" celiac. DR wants me to do 3 more months on gluten and do the endoscopy again!!!!!!! It might depend how long you were gluten free???


Debbie, how long were you gluten free beforehand?
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#7 jerseyangel

 
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Posted 21 April 2010 - 09:50 AM

But is it even worth it? And I was confused that he scheduled the blood test and the biopsy at the same time. Shouldn't I just try the blood test and if it comes back positive then do the biopsy? I ate like 3/4 of a piece of bread when I got back and now I'm bloated. He said I had two options, just keep eating gluten free or do the testing. I'm thinking maybe I should just call him and pick option 1.

Positive response to the gluten-free diet, and symptoms that recur when adding it back is a valid diagnostic tool in and of itself. If you are comfortable listening to your body and don't need a firm medical diagnosis, then just go 100% gluten-free yourself. You don't need a doctor to tell you what to eat--if it makes you sick, don't eat it. :) This board is an excellent resource, and we'll do everything we can to help you.

If, and only if, you decide you want to be tested you do need to be eating gluten for longer than 3 weeks. Some doctors do the blood tests first but not all. Mine went straight to the biopsy and never did the bloodwork.

It's a personal decision and completely up to you. :)
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#8 tarnalberry

 
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Posted 21 April 2010 - 09:56 AM

But is it even worth it? And I was confused that he scheduled the blood test and the biopsy at the same time. Shouldn't I just try the blood test and if it comes back positive then do the biopsy? I ate like 3/4 of a piece of bread when I got back and now I'm bloated. He said I had two options, just keep eating gluten free or do the testing. I'm thinking maybe I should just call him and pick option 1.


Only you can answer that. I was in a similar position (though I hadn't even been gluten free for as long as you had been) when I went in for testing. The results were inconclusive, and I had to decide if I wanted to go back on gluten for further testing. I tried one gluten challenge (made it pretty massive, but still) and felt awful. I decided that the results from the dietary challenge were enough for me, and opted not to keep eating gluten. I've been perfectly fine with my "doctor approved self-diagnosis" but it's a personal decision.

(It would make sense, if it's a reasonable suspicion, to do the blood tests and biopsy at the same time, so you don't have to be on gluten longer than necessary.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#9 passionfruit877

 
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Posted 21 April 2010 - 10:13 AM

Only you can answer that. I was in a similar position (though I hadn't even been gluten free for as long as you had been) when I went in for testing. The results were inconclusive, and I had to decide if I wanted to go back on gluten for further testing. I tried one gluten challenge (made it pretty massive, but still) and felt awful. I decided that the results from the dietary challenge were enough for me, and opted not to keep eating gluten. I've been perfectly fine with my "doctor approved self-diagnosis" but it's a personal decision.

(It would make sense, if it's a reasonable suspicion, to do the blood tests and biopsy at the same time, so you don't have to be on gluten longer than necessary.)


I'm worried that I'm wrong. Sometimes I get sick after I eat, like immediately. But today when I ate that bread I just got really bloated and now I have heartburn. I don't have stomach cramps. And I have to go in between Monday and Thursday to get the blood test, they told me just go whenever. I though maybe I could just wait a week and go get the blood test done, and if its negative cancel the endoscopy. Honestly, I don't want to do an endoscopy.
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#10 AlysounRI

 
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Posted 21 April 2010 - 10:39 AM

I'm worried that I'm wrong. Sometimes I get sick after I eat, like immediately. But today when I ate that bread I just got really bloated and now I have heartburn. I don't have stomach cramps. And I have to go in between Monday and Thursday to get the blood test, they told me just go whenever. I though maybe I could just wait a week and go get the blood test done, and if its negative cancel the endoscopy. Honestly, I don't want to do an endoscopy.


I'm with the rest of the people that gave their opinions.
Both my endo and my blood tests were normal except for the IgA levels.
I am not willing to go back to eating what I know is poison for me!!

If you want to do the blood testing, then great. If you don't want to do the endo, then great :)

If you know that the gluten hurts you and you are not planning to have children (unrecognized celiac and fertility issues are very linked, it seems), then just follow what YOU know to be good for you. You can always find a celiac support group near you, as it's full of gluten intolerant people too. You'll come away with some really interesting experiences, and very beneficial ones too.

Just my two sous,
~Allison
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Long history of IBS, and stomach/intestinal problems. Low on iron for all of my life.
Low on energy, with aches and pains in my joints and in my whole body for as long as I can remember.
Mostly lactose intolerant for all of my life (except for yoghurt)
Diagnosed in 2003 by naturapath as wheat intolerant. Tried it then fell of the wagon. In Feb. 2010 tried going gluten-free.
Went back to the poison in March, 2010.
Tested negative for celiac in April, 2010 (based on negative biopsy and normal tTG test). IgA tested 30-40 percent higher than normal.
Not going to fight the diagnosis because I refuse to go back to the poison. Happily gluten-free for health reasons as of April 2010, and not looking back.

#11 passionfruit877

 
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Posted 21 April 2010 - 11:07 AM

Ah, ok now I'm feeling it. I ate some soup and my stomach feels very bloated. I also have heartburn and that tightness in my chest. How long would I have to wait to take the blood test? They said whenever, so I could do it next week. I have gluten intolerance in my family, as well as lactose intolerance. I don't know that any of them were able to test positive, and one has taken the blood test 3 times. I will definitely stay off gluten either way.

I don't mean to come off as whiny. I just really don't know what to do.
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#12 AlysounRI

 
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Posted 21 April 2010 - 11:21 AM

I don't mean to come off as whiny. I just really don't know what to do.


You're not coming across as whiny at all!!
We all know what this hell feels like.

It will pass, sooner than later hopefully.
But it sounds to me like taking a gluten challenge is not something you are going to want to do ....

I hope you feel better soon :(
~Allison
  • 1
Long history of IBS, and stomach/intestinal problems. Low on iron for all of my life.
Low on energy, with aches and pains in my joints and in my whole body for as long as I can remember.
Mostly lactose intolerant for all of my life (except for yoghurt)
Diagnosed in 2003 by naturapath as wheat intolerant. Tried it then fell of the wagon. In Feb. 2010 tried going gluten-free.
Went back to the poison in March, 2010.
Tested negative for celiac in April, 2010 (based on negative biopsy and normal tTG test). IgA tested 30-40 percent higher than normal.
Not going to fight the diagnosis because I refuse to go back to the poison. Happily gluten-free for health reasons as of April 2010, and not looking back.

#13 tarnalberry

 
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Posted 21 April 2010 - 11:30 AM

Ah, ok now I'm feeling it. I ate some soup and my stomach feels very bloated. I also have heartburn and that tightness in my chest. How long would I have to wait to take the blood test? They said whenever, so I could do it next week. I have gluten intolerance in my family, as well as lactose intolerance. I don't know that any of them were able to test positive, and one has taken the blood test 3 times. I will definitely stay off gluten either way.

I don't mean to come off as whiny. I just really don't know what to do.


It kinda sounds like you know what to do, but are not CONFIDENT. Be confident that something isn't right when you don't feel well. The exact symptoms may not always be the same, but if you eat gluten and then feel worse, that's a pretty strong sign!

If you want the tests, though, prepare to eat plenty of gluten (3-4 slices of bread a day) for a long time (3-4 months).
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#14 ravenwoodglass

 
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Posted 21 April 2010 - 11:56 AM

Ah, ok now I'm feeling it. I ate some soup and my stomach feels very bloated. I also have heartburn and that tightness in my chest. How long would I have to wait to take the blood test? They said whenever, so I could do it next week. I have gluten intolerance in my family, as well as lactose intolerance. I don't know that any of them were able to test positive, and one has taken the blood test 3 times. I will definitely stay off gluten either way.

I don't mean to come off as whiny. I just really don't know what to do.


You need to be back on gluten for the same length of time for the blood test as you do for the endo. Even then false negatives are all too common. Sounds like your body is giving you the answer. The next few days may be rough. Whether you want to continue for another 2 or 3 months is up to you.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#15 DebbieM

 
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Posted 21 April 2010 - 12:05 PM

Debbie, how long were you gluten free beforehand?



I had been off for 9 months
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