Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Had Endoscopy Today.....not Hopeful

nosy parker

Recommended Posts

nosy parker Apprentice
nosy parker
Posted

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. :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


SeekingSarah Apprentice
SeekingSarah
Posted

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.

nosy parker Apprentice
nosy parker
Posted
  • Author

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.

kareng Grand Master
kareng
Posted

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.

Ollie's Mom Apprentice
Ollie's Mom
Posted

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.

nosy parker Apprentice
nosy parker
Posted
  • Author

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:

nosy parker Apprentice
nosy parker
Posted
  • Author

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??

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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.

  • 3 weeks later...
nosy parker Apprentice
nosy parker
Posted
  • Author

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??!

taynichaf Contributor
taynichaf
Posted

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

nvsmom Community Regular
nvsmom
Posted

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

 

Good luck!

nosy parker Apprentice
nosy parker
Posted
  • Author

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.

nosy parker Apprentice
nosy parker
Posted
  • Author

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.

nvsmom Community Regular
nvsmom
Posted

I hope you continue to feel better.

taynichaf Contributor
taynichaf
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,081
    • Most Online (within 30 mins)
      10,442
    Rowan-Noctis
    Newest Member
    Rowan-Noctis
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...