• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 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
0

34 posts in this topic

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

...

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

...

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".

1

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

? :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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,448
    • Total Posts
      930,614
  • Member Statistics

    • Total Members
      63,871
    • Most Online
      3,093

    Newest Member
    Pamela Richey
    Joined
  • Popular Now

  • Topics

  • Posts

    • That's a very normal reaction believe it or not. I would always tell someone to stay on gluten before testing is done because it's a lot easier staying on it than it is reintroducing it. I felt worse on my challenge than I had before giving it up the first time.  Whilst a definite diagnosis is the aim of many (I tried myself) and has benefits in terms of health monitoring etc there is no treatment other than the gluten-free diet so if you get negative or inconclusive results and can't face the further challenge you could choose to forgo it and just go gluten free.  Either way there will be plenty of support for you here. all the best.
    • Thank you so much. 8-12 weeks! Oh my goodness, I don't think I can do that. I think going gluten-free made my body's defenses go down or something. I felt bad before, but reintroducing it was completely awful! I still feel queezy a few days later. Let's pray it just comes back positive. lol
    • Thanks for the feedback!  Gemini you're very right - surgery was a totally weird recommendation.  My current doctor treated me without hormones because my TSH levels are normal. The doctor found that my Vitamin D levels were severely low and put me on a high dose. They climbed just out of the deficient range. I am very active and frequently outdoors,  and they still only climb out of deficient If i'm on intensive VIitamin D supplementation.  -  In addition, She also suggested I  a modified lower carb diet (I'm at a healthy weight, there was no reduction in calories, just an increase in protein and fat and a reduction in carbs,  a low reduction, slightly above the recommendations for a diabetic), which the doctor recommended for PCOS.  Both of these coincided correlated with a slight reduction in the anti-thyroid antibodies and a slight reduction in nodule size. My TSH levels have remained stable, so it was incorrect to say function, really just a reduction in the level of attack (but the thyroid levels are still high).  The doctor that recommended surgery did so because "you're about to start college and you won't have time for monitoring,  it will eventually fail. If we remove it now, you can just go on Synthroid and you'll never have to deal with the levels being out of whack."  Yeah.... I was 18 then.... I'm now 27, but my Mom just went "NOPE!" and got a second opinion.  This person was fine, but all he did was monitor to make sure the TSH levels stayed ok.  They did, I just have a goiter and several nodules.  The most recent endo. I've seen, who put me on intensive Vitamin D therapy and worked with me on the diet,  felt like she was thorough (again minus completely dismissing the first celiac results. I think the D supplementation and diet were associated with a decrease (but obviously didn't and really couldn't reverse the outcome of the disease) in antibodies and nodule size because my TSH levels have yet to get out of whack. I also wonder if with fewer carbs, I ate less (thought still too much If I'm celiac) gluten, and  that could have been more a factor in the correlation.  Gemini- I'm glad that you have found a good treatment that keeps your levels where they need to be!  I also really appreciate the welcome. Update:  I have a referral to a GI specialist! I don't want to have Celiac... I love to travel, and I'm very social. I live in the US but my family is from Uruguay, South America, so I carry this Latin Cultural thing about loving to share food and seeing it as such a huge part of hospitality and community.  I know that food in social settings gets hard to navigate...But I feel a sense of relief to think that I might have an answer to other health questions and that there is a way that I can stop or at least slow damage.   
    • These can be sourced from various ingredients one being wheat. Please check with the manufacture of your products to figure out if they contain gluten or how they are made....and yes gluten in your makeup, and especially lotion, shower gel, etc is a huge issues. Consider this, gluten contamination can happen from gluten protein residue. How often would you touch your arms, hair, etc or use your hands and touch your food, plate, fork, spoon before putting it in your mouth? Do you bite your nails, sometimes pick up a mint or gum? Hate to say it this way but if you use gluten containing stuff like that shit will happen with cross contamination. Consider changing over to a dedicated gluten-free version of hygiene products and save your self the drama. I use EO products, The Seaweed Co, Savvy Naturals, Hugo Naturals, and Vaseline products products without issues personally.       
    • I had an enlarged thyroid, but no nodules. Dr felt it and ultrasound confirmed. I had so many symptoms of hypothyroid- weight gain, fatigue, hoarse voice-couldn't yell or sing or swallow (still can't swallow, but mostly at the bottom end. Used to not be able to get it past my neck, either) brain fog so that I couldn't form a complete sentence or respond with any timeliness, cold all the time, etc. Dr was in his 70's and old school. He didn't do any further blood tests or anything. Just said to take iodine. So, I started taking iodine. By the next year, different dr, all my thyroid tests came back normal, it wasn't enlarged anymore and most of my symptoms were very much improved. Read "Iodine: Why you need it and can't live without it" Kinda boring and repetitive, but good info. Iodine Crisis by Lynne Farrow is also really good. (She talks more about breast cancer than thyroid. But, the iodine information & history is great.) 

      https://www.amazon.com/Iodine-Need-Cant-Live-Without/dp/0966088239/ref=sr_1_1?ie=UTF8&qid=1493386200&sr=8-1&keywords=dr+brownstein+iodine+book
  • Upcoming Events