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Gluten Challenge Before Endoscopy


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33 replies to this topic

#1 KikiB

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Posted 08 October 2012 - 02:44 PM

Today being a particularly hard day, I'm really wondering if the endoscopy is worth eating gluten. My consultation is not until the 23rd, and I don't know how long it would take to schedule it after that.

My symptoms are extreme fatigue, muscle weakness and nausea.

Do you think it's worth it to keep going? I feel like I'm torturing myself.
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#2 GottaSki

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Posted 08 October 2012 - 07:19 PM

Can you call for urgent or cancellation appointment? Sometimes your primary can request an urgent appointment if you can't.

I don't recall - did you already have positive blood tests? If not, I'd suggest getting a full celiac blood panel before you go gluten-free should you decide you it is not worth waiting for an endo to go gluten-free.
  • 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 :)


#3 KikiB

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Posted 09 October 2012 - 06:58 AM

Can you call for urgent or cancellation appointment? Sometimes your primary can request an urgent appointment if you can't.

I don't recall - did you already have positive blood tests? If not, I'd suggest getting a full celiac blood panel before you go gluten-free should you decide you it is not worth waiting for an endo to go gluten-free.


My blood tests were negative, but my doctor still wants me to have the endoscopy. I will call and ask about getting in earlier -- that's a good idea.

I'm really surprised at how my reactions to gluten are getting worse over time.
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#4 GottaSki

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Posted 09 October 2012 - 07:26 AM

I'm really surprised at how my reactions to gluten are getting worse over time.

This happens to many of us - I found it helpful - clear reactions confirmed the need to be as gluten-free as possible.
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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 :)


#5 tom

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Posted 09 October 2012 - 08:22 AM

My blood tests were negative, but my doctor still wants me to have the endoscopy.
...

Did the Dr specifically say to keep eating gluten after the blood test?
There's certainly a case to be made that actual tissue damage can't go away as quickly as a threshold level of antibodies.
  • 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

#6 KikiB

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Posted 09 October 2012 - 08:34 AM

Did the Dr specifically say to keep eating gluten after the blood test?
There's certainly a case to be made that actual tissue damage can't go away as quickly as a threshold level of antibodies.


I originally went off gluten for a week after my blood tests, but after advice from people on the board, and checking with the doctor's office, was told to keep eating gluten until the endoscopy.
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#7 GottaSki

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Posted 09 October 2012 - 08:52 AM

Did the Dr specifically say to keep eating gluten after the blood test?
There's certainly a case to be made that actual tissue damage can't go away as quickly as a threshold level of antibodies.

If a person removes gluten before endoscopy it can reduce the amount of lymphocytes detected in the biopsies of the small intestine.

While increased lymphocytes are not specific to Celiac Disease - the increase caused in reaction to gluten ingestion is the first indication of Celiac Disease and precedes tissue damage.

Given it is difficult for many to obtain diagnosis with current medical testing - why should someone decrease the chances by removing gluten before testing is complete?

Increased lymphocytes found by endoscopic biopsy along with symptom improvement once gluten is removed could prevent future damage and lifelong health problems.

In my opinion we should give the tests currently available every possible chance to be accurate. Removing gluten could lessen accuracy.
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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 :)


#8 tom

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Posted 09 October 2012 - 09:57 AM

Increased lymphocytes found by endoscopic biopsy along with symptom improvement once gluten is removed could prevent future damage and lifelong health problems.


Is there a word or 2 missing from this?


Given it is difficult for many to obtain diagnosis with current medical testing - why should someone decrease the chances by removing gluten before testing is complete?

Seems like a perfectly reasonable rhetorical question to make a reasonable point.
But it's not really rhetorical when there actually *have* been Celiacs whose level of misery during a gluten challenge *has* altered their testing/challenge schedule - aka "decreased their chances".
It's not unheard of and if we want detailed reasons we'd have to ask those that did so.


I can apologize in advance if you take this personally but it's a logical inconsistency to say "eat gluten til the last minute for endoscopy/biopsy diagnosis or the lymphocytes might be gone, though the presence of lymphocytes isn't diagnostic for celiac disease" (paraphrased, of course).

If a person removes gluten before endoscopy it can reduce the amount of lymphocytes detected in the biopsies of the small intestine.

While increased lymphocytes are not specific to Celiac Disease - the increase caused in reaction to gluten ingestion is the first indication of Celiac Disease and precedes tissue damage.
...


Lastly, I could see the "first indication" possibility as helpful in cases where the patient is ambiguous about gluten, but KikiB is apparently past that.

I'm really surprised at how my reactions to gluten are getting worse over time.


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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

#9 GottaSki

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Posted 09 October 2012 - 10:02 AM

I can apologize in advance if you take this personally

I don't take it personally. We simply disagree on what should be done to give current testing mechanisms their best chance to diagnose &/or help people.
  • 3

-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 :)


#10 DavinaRN

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Posted 10 October 2012 - 03:09 AM

KikiB, I understand your feelings. I went gluten free after PCP said no to blood work and wants me to have endoscopy and colonoscopy (can't afford and it doesn't change treatment). Then four days later my endocrinologist says that she will order it with my other labs, so I'm back to eating it and wondering how I was surviving and just accepting of feeling this way before.
  • 1
Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#11 IrishHeart

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Posted 10 October 2012 - 05:11 AM

My blood tests were negative, but my doctor still wants me to have the endoscopy. I will call and ask about getting in earlier -- that's a good idea.

I'm really surprised at how my reactions to gluten are getting worse over time.


I have to say that I think your doctor is remarkably unique and enlightened. He really wants to help you get a DX.

We often hear others report that doctors say "blood work is negative, therefore, you can't have celiac" (that assumption nearly killed me). As a result, listening to my former GI doc kept me ill for 12 years.

It must be hellish to go through a gluten challenge (I could never do it now), but unless he is willing to DX you based on
symptoms alone, it seems as if this is your only choice right now.

For what it is worth, (and this is just my opinion) I would try to stick it out and go for the best possible diagnostic outcome.

If you get really ill and unable to function, then, maybe you need to bag it. Sadly, it comes down to this: how important is a "real" DX to you?

I would also call my doc and beg for a quicker appointment and he is the kind of guy who give it to me.

Hopefully, yours can see you sooner.

Best wishes. I feel for you going through all this as I know how awful you must feel.
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#12 GottaSki

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Posted 10 October 2012 - 07:45 AM

Did the Dr specifically say to keep eating gluten after the blood test?
There's certainly a case to be made that actual tissue damage can't go away as quickly as a threshold level of antibodies.

My first response to Tom was for the benefit of the OP along with anyone else reading it that may be struggling to obtain a diagnosis. My intent was to explain that the endo can provide valid information even before there is significant tissue damage.

Tom-
The specific problem I have with your post is that it suggests that the OP needn't remain gluten-free to give the doctor/endoscopy/biopsy the BEST opportunity for accuracy.

I don't see how this suggestion is helpful to someone new to Celiac Disease and to the procedures currently utilized to diagnose. She has not had years to research these processes and certainly shouldn't have to explain her choices during an already confusing time.

She came to celiac.com to find information and help with what the best course of action would be. If I remember correctly she removed gluten for trial after the negative blood work - found out she was going to have and endoscopy within the month - was told (might have been by me) that she needs to continue ingesting gluten until the endo - checked with her doc and decided it was the best course for her to continue eating gluten for the weeks leading up to the endoscopy.

To my knowledge - no one has suggested she needs to continue eating gluten if she can not tolerate the reactions.

If you want to have a discussion about the time it is necessary to be gluten-free for the endoscopy to be invalid - perhaps you can start another thread. That would be a valid conversation to have without adding confusion to an already confusing time for someone trying to obtain a diagnosis.
  • 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 :)


#13 KikiB

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Posted 10 October 2012 - 12:05 PM

My first response to Tom was for the benefit of the OP along with anyone else reading it that may be struggling to obtain a diagnosis. My intent was to explain that the endo can provide valid information even before there is significant tissue damage.

Tom-
The specific problem I have with your post is that it suggests that the OP needn't remain gluten-free to give the doctor/endoscopy/biopsy the BEST opportunity for accuracy.

I don't see how this suggestion is helpful to someone new to Celiac Disease and to the procedures currently utilized to diagnose. She has not had years to research these processes and certainly shouldn't have to explain her choices during an already confusing time.

She came to celiac.com to find information and help with what the best course of action would be. If I remember correctly she removed gluten for trial after the negative blood work - found out she was going to have and endoscopy within the month - was told (might have been by me) that she needs to continue ingesting gluten until the endo - checked with her doc and decided it was the best course for her to continue eating gluten for the weeks leading up to the endoscopy.

To my knowledge - no one has suggested she needs to continue eating gluten if she can not tolerate the reactions.

If you want to have a discussion about the time it is necessary to be gluten-free for the endoscopy to be invalid - perhaps you can start another thread. That would be a valid conversation to have without adding confusion to an already confusing time for someone trying to obtain a diagnosis.


Thanks, Lisa. I really appreciate how helpful you have been! I was off gluten for about 9 days, but went back on thanks to you and the board. If I can make it, I would like to get a diagnosis. As it is, I'm a little concerned the GI won't find anything because it hasn't been long enough. The majority of my symptoms started after I got mono in April (I read that viral infections can trigger Celiac). But I'm going forward. I do better when I only eat gluten at night, so I can just go to bed and sleep through the worst of it. I do worry that I'm not eating enough of it -- that part seems to vary so much.
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#14 KikiB

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Posted 10 October 2012 - 12:08 PM

KikiB, I understand your feelings. I went gluten free after PCP said no to blood work and wants me to have endoscopy and colonoscopy (can't afford and it doesn't change treatment). Then four days later my endocrinologist says that she will order it with my other labs, so I'm back to eating it and wondering how I was surviving and just accepting of feeling this way before.


Thanks, Davina. My reaction to gluten continues to surprise me. I swear it gets worse by the day. Hang in there!
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#15 KikiB

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Posted 10 October 2012 - 12:11 PM

I have to say that I think your doctor is remarkably unique and enlightened. He really wants to help you get a DX.

We often hear others report that doctors say "blood work is negative, therefore, you can't have celiac" (that assumption nearly killed me). As a result, listening to my former GI doc kept me ill for 12 years.

It must be hellish to go through a gluten challenge (I could never do it now), but unless he is willing to DX you based on
symptoms alone, it seems as if this is your only choice right now.

For what it is worth, (and this is just my opinion) I would try to stick it out and go for the best possible diagnostic outcome.

If you get really ill and unable to function, then, maybe you need to bag it. Sadly, it comes down to this: how important is a "real" DX to you?

I would also call my doc and beg for a quicker appointment and he is the kind of guy who give it to me.

Hopefully, yours can see you sooner.

Best wishes. I feel for you going through all this as I know how awful you must feel.


So your blood tests were negative, too? I am going to keep going and get through this. Thank you for the encouragement!
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