Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Borky
      - Borky posted a topic in Dermatitis Herpetiformis
      0

      Gluten food test strips

      I just recently saw something on this. Has anyone tried test strips? Which brand is better? Not sure how they really work and if they really do work. Thank you, Nancy (aka Borky)
    2. Wheatwacked
      - Wheatwacked replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      Gluten Issues and Vitamin D

      And more:
    3. Wheatwacked
      - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive. The endoscopy and biopsy is looking for damage to your small intestine. I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy...
    4. Scott Adams
      0

      Gluten-Free Diet Burnout: Why It Happens and How to Get Your Motivation Back (+Video)

    5. Midwesteaglesfan
      - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      At 41 years old I have been fighting fatigue and joint pain for a couple months. My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right. Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist. He was extremely thorough and sat with me and m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,268
    • Most Online (within 30 mins)
      7,748
    Cookie Monster13
    Newest Member
    Cookie Monster13
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Borky
      Gluten food test strips

      By Borky · Posted

      I just recently saw something on this.  Has anyone tried test strips?  Which brand is better?  Not sure how they really work and if they really do work.  Thank you, Nancy (aka Borky)
    • Wheatwacked
      Gluten Issues and Vitamin D

      By Wheatwacked · Posted

      And more:
    • Wheatwacked
      Going for upper endoscopy today

      By Wheatwacked · Posted

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      Going for upper endoscopy today

      By Midwesteaglesfan · Posted

      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.