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Gluten Challenge Before Endoscopy
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34 posts in this topic

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.

You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)

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You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)

Well said....and I agree completely. We are here for you and we are trying to give you our very best advice.

Best wishes to you.

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? :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".

Boy, what a train wreck this thread has become! Ya know, Tom, Irish and GottaSki have offered up phenomenal advice to the OP and yet, you keep on

making attacks and challenging everything they say. I mean, really, what the hell is your problem? Who pee'd on your Cheerios this week? :blink:

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Well said....and I agree completely. We are here for you and we are trying to give your our very best advice.

Best wishes to you.

Thank you, IrishHeart. I appreciate the advice! I am learning a lot and everyone is making this process better -- I don't feel so alone. :)

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You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)

Thanks, Lisa! No apologies necessary. Not your fault that things went sideways here. I'm going to keep going and at this point I feel like I will make it. Just keeping my eye on the big goal. When I have my consultation with the GI, I'll tell her how hard this is on my system, and hopefully she'll schedule the endo quickly. I'm very grateful for all of your help!

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Thank you, IrishHeart. I appreciate the advice! I am learning a lot and everyone is making this process better -- I don't feel so alone. :)

You're not alone now. You have us. ;) We care. Keep us posted.

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I too am new to this. I have seen doctor after doctor begging for help. They all treated me for individual symptoms. I am 38 years old. I've been on rx for 8 years for reflux and have been diagnosed with Barrett's Esophagus. I have also been on rx for hypothyroidism for 3 years. I was extremely lethargic and seemingly depressed. So then came the rx for that. Next muscle and joint pain. Another pill for that. Then blood pressure, so another pill. All the while, of course I had stomach issues, and all of these symptoms are related. No one was looking at the big picture. I finally went to a chiropractor. She suggested that maybe I had a gluten allergy. I haven't eaten gluten since 9/11/12. I am like a new person. Energy, back to my happy self, no blood pressure issues, joint and muscle pain gone.

I saw my GI last week and asked for Celiac testing as they had never before done this with previous EGD's or colonoscopies. The blood work was negative. I asked to be scheduled for the EGD and biopsy b/c I feel certain its celiac. I even asked if I needed to "contaminate" myself between now and the biopsy bc I had read such. Doc said not necessary. But from all of your posts, I'm thinking he's way off!! My test is scheduled for 11/19. Since I've only been gluten-free for a little less than 2 months, what do you think? If I keep eating gluten until day of test, should my test be accurate?

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I saw my GI last week and asked for Celiac testing as they had never before done this with previous EGD's or colonoscopies. The blood work was negative. I asked to be for the EGD and biopsy b/c I feel certain its celiac. I even asked if I needed to "contaminate" myself between now and the biopsy bc I had read such. Doc said not necessary. But from all of your posts, I'm thinking he's way off!! My test is scheduled for 11/19. Since I've only been gluten-free for a little less than 2 months, what do you think? If I keep eating gluten until day of test, should my test be accurate?

My GI said that 2 pieces of bread a day for 3 weeks is enough. Although to be fair, I'm not crazy about her.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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