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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.

Had Endoscopy Today.....not Hopeful
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nosy parker    0

Had my endoscopy today.  Didn't see the doctor after the procedure, just woke up in recovery.  My report says that it was fine.  He did take the biopsies, but I asked the nurse, she looked at my paper and answered  "2" when I asked how many samples. She was the recovery room nurse, not the one during the procedure. This was disappointing to hear.  Hopefully she's wrong.  I had both a gastroscopy and colonoscopy so I'm hoping she meant that they took biopsies of both, and not 2 samples.  Either way, my doctor re-iterated to me that he really doesn't suspect celiac and thinks it's simply IBS.  Feeling upset and not very hopeful that I will get this diagnosis.  I waited almost a year to finally get this endoscopy and felt so happy that this would finally be "it", and now I'm really just feeling down about it.  Like it's the last step and if I don't get the answer I'm hoping for it's over.

 

Not at all how I thought I would feel today. :(

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I feel your frustration about being told "it's just IBS"...what were your blood results? I hope they did take the correct number of samples and you get clear results from them...some answers not the default IBS.

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nosy parker    0

Thanks seekingsarah.  My bloods were inconclusive because we discovered I'm IgA deficient.  I was low ferritin and so along with my other complaints/symptoms, the GI opted to just go in and take a look.  I had the colonoscopy and upper endoscopy this week as a result.  He just wanted to rule out some things.  The issue of celiac was brought up by me, not him.  He did the initial bloods because I asked, and then he said that since he was going in to look anyway, he would biopsy to check for celiac although he doesn't believe that it could be so.  He really says IBS. 

 

Before the procedure I asked how many samples he would be taking and he answered "enough for diagnosis".  I asked if it was between 5 -10 and he said yes.  So afterwards in the recovery room I asked the nurse how many samples were taken and she answered "2".  I know that he removed a couple of polyps during the colonoscopy so I'm not sure if the "2" was referring to the fact that he took samples for biopsy in "both" the colonoscopy and upper endoscopy. 

 

With all the pushing I've had to do to get this far, a lot of trust is necessary.  How can you really know if he asked the tech to check for celiac?  Maybe he'll just call me and say "everything's fine" because he doesn't think celiac is even possible.  Know what I mean?  I hope not.  I'm so tired of always feeling like I'm left with more questions than answers. 

 

What I need to do is relax and just wait, I guess.  I mean I've pinned my hopes to this diagnosis because everything seems to fit, but really, it's always possible that it's not celiac and just something else.  And that would mean being back at square one.  So fed up.

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kareng    1,992

Thanks seekingsarah.  My bloods were inconclusive because we discovered I'm IgA deficient.  I was low ferritin and so along with my other complaints/symptoms, the GI opted to just go in and take a look.  I had the colonoscopy and upper endoscopy this week as a result.  He just wanted to rule out some things.  The issue of celiac was brought up by me, not him.  He did the initial bloods because I asked, and then he said that since he was going in to look anyway, he would biopsy to check for celiac although he doesn't believe that it could be so.  He really says IBS. 

 

Before the procedure I asked how many samples he would be taking and he answered "enough for diagnosis".  I asked if it was between 5 -10 and he said yes.  So afterwards in the recovery room I asked the nurse how many samples were taken and she answered "2".  I know that he removed a couple of polyps during the colonoscopy so I'm not sure if the "2" was referring to the fact that he took samples for biopsy in "both" the colonoscopy and upper endoscopy. 

 

With all the pushing I've had to do to get this far, a lot of trust is necessary.  How can you really know if he asked the tech to check for celiac?  Maybe he'll just call me and say "everything's fine" because he doesn't think celiac is even possible.  Know what I mean?  I hope not.  I'm so tired of always feeling like I'm left with more questions than answers. 

 

What I need to do is relax and just wait, I guess.  I mean I've pinned my hopes to this diagnosis because everything seems to fit, but really, it's always possible that it's not celiac and just something else.  And that would mean being back at square one.  So fed up.

Get copies of the blood work, the procedure report and the pathology report. That will tell you if he did the correct sampling.

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Ollie's Mom    29

I totally understand your concerns regarding your doctor.

I have my fingers crossed for you, though. I hope he did indeed take a number of biopsies, and I hope you finally get an answer.

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nosy parker    0

Get copies of the blood work, the procedure report and the pathology report. That will tell you if he did the correct sampling.

 

Kareng, how do you ask for that?  Just request it from the doctor?  It's almost like screaming "hey buddy, I don't trust you for beans"....... wouldn't that seem so offensive?  I know I shouldn't give a crap about offending, but I do want to keep him as a doctor.  Even though he hasn't really supported the idea that it's celiac, I have to admit that he at least bothered to do the tests.  And I am maybe being paranoid in thinking that he isn't "really" checking the biopsies.

 

But of course you would have to interpret the results for me anyway because I have no clue what I'm looking for! :lol:

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nosy parker    0

I totally understand your concerns regarding your doctor.

I have my fingers crossed for you, though. I hope he did indeed take a number of biopsies, and I hope you finally get an answer.

 

Thanks Ollie's mom, I feel like a paranoid loon.  It's just that everything is always in someone else's hands and you really have to hope they follow through the way you would.  But really, how can you believe that, when the doctor himself doesn't really think it could be celiac anyway.....

 

I'm crossing my fingers and toes!  Isn't that insane?  Wishing for this awful diagnosis??

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kareng    1,992

Kareng, how do you ask for that?  Just request it from the doctor?  It's almost like screaming "hey buddy, I don't trust you for beans"....... wouldn't that seem so offensive?  I know I shouldn't give a crap about offending, but I do want to keep him as a doctor.  Even though he hasn't really supported the idea that it's celiac, I have to admit that he at least bothered to do the tests.  And I am maybe being paranoid in thinking that he isn't "really" checking the biopsies.

 

But of course you would have to interpret the results for me anyway because I have no clue what I'm looking for! :lol:

You can ask at your next appointment or call and ask for them. You don't even talk to the doc if you call. Lots of people keep them for their own records and will have them to give other doctors or enroll in a medical study or send insurance.

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nosy parker    0

Just a quick update.  I got a call from my GI's office because he needed to schedule a follow-up.  They left me a message and I have an appointment May 27th.  Around here, the doctor doesn't call unless there's something to discuss. It was pretty much left "Everything looked good" after the endo and he gave me a requisition for an additional test to rule out crohn's with a note to schedule a follow-up 3 months after the test. So.......I assume they found something in the biopsies.  Hmmm. Called his secretary to try and get more details, but she couldn't provide any about the results of the biopsies.  Trying not to get my hopes up.  I don't know how on earth I will be able to wait that long??!

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taynichaf    5

I'm sorryyy:( I know the feeling.. I'm new to this but of your still eating gluten, just get retested!

Hope you get accurate results <3

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nosy parker    0

I'm sorryyy:( I know the feeling.. I'm new to this but of your still eating gluten, just get retested!

Hope you get accurate results <3

 

Thanks.  But I am holding out hope that this is "good news".  If HIS office called me to schedule a follow-up, then I assume something came up in the biopsies.  I hope it'll be some kind of answer.

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nosy parker    0

That is a long time... can you ask to be put on a wait list to get in sooner?

 

Good luck!

 

Ha! I wish!  I actually think she had a cancellation in order to put me in that soon.  I assume they don't consider it life-threatening (which is a good thing) because the secretary did say not to worry because if it was something urgent I would be seen sooner.  So of course I'm thinking it's my celiac diagnosis!  But I'm really trying to keep it in perspective.  He may have found something else altogether, or since I had a colonoscopy as well, the results might be from that.  Just feeling better than I did 2 weeks ago when I had the endo done and I thought "that's the end of the line" after I saw my initial report as everything "normal".  Thanks for your good wishes.

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taynichaf    5

Thanks. But I am holding out hope that this is "good news". If HIS office called me to schedule a follow-up, then I assume something came up in the biopsies. I hope it'll be some kind of answer.

I posted before I read your update:)

That's such a long wait though! Frustrating, but hopefully you get the results you want.

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