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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Challenge Before Endoscopy
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34 posts in this topic

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KikiB    4

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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GottaSki    459

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.

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KikiB    4

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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GottaSki    459

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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tom    75

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.

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KikiB    4

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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GottaSki    459

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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tom    75

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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GottaSki    459

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.

  • Upvote 3

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DavinaRN    5

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.

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IrishHeart    1,634

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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GottaSki    459

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.

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KikiB    4

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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KikiB    4

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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KikiB    4

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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IrishHeart    1,634

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

Blood tests can be falsely negative for many reasons.

A good GI will do the endo/biopsy anyway. (even though most docs think the standard "protocol" says he should not bother if they are neg)

You sound like you are in good hands.

Good luck, hon. Hang in there.

Keep us posted. :)

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tom    75

...

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.

...

The specific problem you should have is w/ the Dr not telling KikiB to continue the challenge post-serology in the first place. I specifically asked my question to clarify that.

Not sure what about that is confusing.

Do you think that the phrase "a case can be made" = "here I am, making this case!" ?

It doesn't.

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tom    75

Blood tests can be falsely negative for many reasons.

A good GI will do the endo/biopsy anyway.

...

Wouldn't the better GIs do both blood & endo/biopsy after a single gluten challenge, not setting up the need for a SECOND gluten challenge?

Can't recall seeing this situation here before.

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IrishHeart    1,634

Wouldn't the better GIs do both blood & endo/biopsy after a single gluten challenge, not setting up the need for a SECOND gluten challenge?

Can't recall seeing this situation here before.

The OP stated she went off gluten herself after the blood work.

She also stated the doctor's office told her to stay on it. So she resumed it.

In your rush to pick a fight with me (as always) you may have missed that part.

yes, of course, IDEALLY a gluten challenge should be done once and both tests done. But this was not the case.

All I said was I am glad she is in good hands and her doctor is doing the biopsy, IN SPITE OF NEG BLOOD WORK.

This does not require an argument, does it? nope.

You like to argue, Tom and you like to isolate sections of what people say with little regard for the CONTEXT for how it is said. I'll not play this game with you.

You do it to me ( and often to others)---you try and twist my words.

I said it in the context that her doctor is doing the right thing by scheduling a biopsy, even though the blood panel was negative. Most doctors would just abandon her.

That is all.

Will you just leave it alone?

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I hope your test results will reflect the truth. I hope you won't be extremely uncomfortable in the meanwhile. I hope you can go totally gluten free very soon. I am glad that you seem to have figured out the problem so soon after mono. (I didn't figure it out for 30 years) Still, you will suffer through this for a time. Be ready, get ready, to go back to your diet as soon as possible do it!

Diana

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ravenwoodglass    1,218

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

Kiki I also had false negative blood tests and had to do 2 challenges. The first was after an allergist set up an elimination diet and I had been gluten free at that point for 2 weeks. My reaction was severe and that doctor told me never to eat gluten again. He then set me up with a GI doctor and I had to wait a month to get in. The GI doctor demanded a second challenge before the biopsy. The results were dire.

If you can keep going without becoming seriously ill then go ahead and do so if you need the official diagnosis. Do keep your doctor in the loop as to your reactions. Call and speak to the nurse in the doctor's office if things get severe so he/she can relay your reactions to the doctor. They may be able to move up your appointment or may even tell you to stop the challenge and diagnose. No matter what the results of your testing it sounds like your body is giving you the answer as far as whether you tolerate gluten or not.

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tom    75

...

In your rush to pick a fight with me (as always) you may have missed that part.

...

? :huh:

My comment that the two-challenge GI isn't what I would call a "good GI" is somehow seen as a personal attack on YOU? :rolleyes:

I find it hard to believe that any unbiased third-party observer would call that "picking a fight".

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KikiB    4

I hope your test results will reflect the truth. I hope you won't be extremely uncomfortable in the meanwhile. I hope you can go totally gluten free very soon. I am glad that you seem to have figured out the problem so soon after mono. (I didn't figure it out for 30 years) Still, you will suffer through this for a time. Be ready, get ready, to go back to your diet as soon as possible do it!

Diana

Thank you, Diana!

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KikiB    4

Kiki I also had false negative blood tests and had to do 2 challenges. The first was after an allergist set up an elimination diet and I had been gluten free at that point for 2 weeks. My reaction was severe and that doctor told me never to eat gluten again. He then set me up with a GI doctor and I had to wait a month to get in. The GI doctor demanded a second challenge before the biopsy. The results were dire.

If you can keep going without becoming seriously ill then go ahead and do so if you need the official diagnosis. Do keep your doctor in the loop as to your reactions. Call and speak to the nurse in the doctor's office if things get severe so he/she can relay your reactions to the doctor. They may be able to move up your appointment or may even tell you to stop the challenge and diagnose. No matter what the results of your testing it sounds like your body is giving you the answer as far as whether you tolerate gluten or not.

Thank you. I caused part of this myself by assuming when I was done with the blood test, I could stop eating the gluten. I didn't realize you needed to keep eating it for the endoscopy.

Either way it turns out, it's obvious to me I can no longer tolerate gluten.

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IrishHeart    1,634

? :huh:

My comment that the two-challenge GI isn't what I would call a "good GI" is somehow seen as a personal attack on YOU? :rolleyes:

I find it hard to believe that any unbiased third-party observer would call that "picking a fight".

There you go again, avoiding the part you missed. She stopped the gluten. The doc did not tell her to do that.

And, I'll try to explain it again.

You said "the better GI". well, yeah, but, that's a "hypothetical" situation.

We are talking with the OP and HER situation.

The GI she has scheduled a biopsy, despite a negative blood test.

Her GI is following through.

This is a good thing, whether you think so or not. It means she is not being abandoned.

I also suggested if it becomes too much for her, she should bag it because I do not like to see anyone suffer.

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