Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 and extremely worried

Sabaarya
 Share

Recommended Posts

Sabaarya Community Regular
Sabaarya
Posted

Hi everyone,

I’ve had endoscopy this morning 16 month after initial diagnose and have been on gluten-free diet for a year and now I’m extremely worried what if it didn’t heal. I did ask doctor how was everything,he said that we need to wait for biopsy results. I’m kind of concerned that he didn’t mention anything about what did he see. I checked my last year pathology and it did state that duodenum mucosa shows partial blunting/atrophy with intraepithelial lypmphosities  and it’s suggestive with early or partially treated celiac Marsh 3A. Doctor said we have to wait for biopsy results because last year everything looked normal to him but it turned out celiac. Does everyone with Celiac usually wait for biopsy results even if it’s their repeat endoscopy after initial diagnose or do usually doctors say that everything looks normal and healed? My doctor said no worries let’s just wait for biopsies…

Thank you

Saba

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

Whether the doctor can see celiac damage or not during the endoscopy mainly depends on the magnification available with their endoscope.  My doctor was at a university with fancy equipment so she could see the villi.  Many doctors don’t have access to such equipment.

Sabaarya Community Regular
Sabaarya
Posted
  • Author

Interesting. My procedure was at Beverly Hills medical center I think they should have access to the newest equipments. I was also told when the damage is mild they won’t be able to differentiate whether it’s celiac or inflammation. I don’t know. Will see. Have you had repeat endoscopy after your initial diagnose?

RMJ Mentor
RMJ
Posted
28 minutes ago, Sabaarya said:

Interesting. My procedure was at Beverly Hills medical center I think they should have access to the newest equipments. I was also told when the damage is mild they won’t be able to differentiate whether it’s celiac or inflammation. I don’t know. Will see. Have you had repeat endoscopy after your initial diagnose?

I never had the initial endoscopy for reasons unrelated to celiac. I have a bleeding disorder and need to take medication prior to biopsies. I had a hematologist who didn’t believe I could have celiac without digestive symptoms and she wouldn’t prescribe the medication. My endoscopy was after I had a new hematologist and needed a colonoscopy anyway.  It was 4 years after I started a gluten free diet, but one of my antibody levels was still positive.  I still had “patchy mild increase in intraepitheliallymphocytes and focal mild villous blunting” consistent with partially treated celiac disease.  My antibody levels are now normal but my gastroenterologist hasn’t suggested a repeat endoscopy.  

Have you had repeat antibody tests?

Sabaarya Community Regular
Sabaarya
Posted
  • Author

My antibody tests were negative, I got diagnosed with positive biopsy. But I was checked only for 2 antibodies which were TISSUE TRANSGLUTAMINASE AB, IGA and IMMUNOGLOBULIN A. I know there is more l but I was checked for those 2 and negative, I believe thats the classic antibodies for celiac but anyways they were negative…

RMJ Mentor
RMJ
Posted
10 minutes ago, Sabaarya said:

My antibody tests were negative, I got diagnosed with positive biopsy. But I was checked only for 2 antibodies which were TISSUE TRANSGLUTAMINASE AB, IGA and IMMUNOGLOBULIN A. I know there is more l but I was checked for those 2 and negative, I believe thats the classic antibodies for celiac but anyways they were negative…

Immunoglogulin A is total IgA, and only run as a control to make sure you’re not deficient in IgA. If you were, the other IgA tests might not be accurate. So you were only checked for one celiac-specific antibody.  I was checked for 4 and they all were positive.  Deamidated gliadin peptide IgA is the one that took years to normalize.

Sabaarya Community Regular
Sabaarya
Posted
  • Author
1 hour ago, RMJ said:

Immunoglogulin A is total IgA, and only run as a control to make sure you’re not deficient in IgA. If you were, the other IgA tests might not be accurate. So you were only checked for one celiac-specific antibody.  I was checked for 4 and they all were positive.  Deamidated gliadin peptide IgA is the one that took years to normalize.

I’ll have my doctor to order those tests for me. After I got diagnosed I literally made my mom to have celiac panel test and she did it twice and every time her Gliadin IGA was positive,but other antibodies like andImmunoglobulin A Ab and tTG IgA were negative. I do tell her mom you have celiac and I probably got that from you but she refuses follow gluten-free diet,she says it doesn’t bother me,my blood levels are all normal my vitamins are normal and I’m 65 I don’t need it. I can’t understand her approach at all! So do you think she might have celiac with positive Gliadin IGA antibody? I had endoscopy last year because of anemia and occult blood in stool. I always had gastrities and acid reflux so it was not a surprise for me,but yeah that was how I diagnosed with celiac. After endoscopy last year he said you have red spots in your duodenum and he thought it was duodenitis,he actually was surprised that it turned out to be celiac. But my pathology stated that mucosa shows early celiac sprue. I really hope it got a lil bit better,my symptoms got improved I hope duodenum got better too…

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

Celiac.com Sponsor (A8-M):


yuluyouyue Contributor
yuluyouyue
Posted

It takes sometimes more than a year to heal so no need to panic if it turns out you are not there yet. Also, what  exactly do you mean by gliadin IGA? I thoguht that is supposed to be positive in order for antibody test to be valid and it is not a sign of celiac on its own. If so and if your Mom feels well there is really no need to put her through more testing. I also made my Mom get tested. Here we only do total IGA, which I suspect you mean by gliadin IGA, and ttg IGA. Her ttg was 0 point something, she has no symptoms and she is healthy. Of course, she could also request a full panel but I don't think there is any need. Let's not spread health anxiety to people who don't have it. Anyway, I think it's my Dad who has it but he will not do anything about it. He is an adult and it is his choice. 

17 hours ago, Sabaarya said:

I’ll have my doctor to order those tests for me. After I got diagnosed I literally made my mom to have celiac panel test and she did it twice and every time her Gliadin IGA was positive,but other antibodies like andImmunoglobulin A Ab and tTG IgA were negative. I do tell her mom you have celiac and I probably got that from you but she refuses follow gluten-free diet,she says it doesn’t bother me,my blood levels are all normal my vitamins are normal and I’m 65 I don’t need it. I can’t understand her approach at all! So do you think she might have celiac with positive Gliadin IGA antibody? I had endoscopy last year because of anemia and occult blood in stool. I always had gastrities and acid reflux so it was not a surprise for me,but yeah that was how I diagnosed with celiac. After endoscopy last year he said you have red spots in your duodenum and he thought it was duodenitis,he actually was surprised that it turned out to be celiac. But my pathology stated that mucosa shows early celiac sprue. I really hope it got a lil bit better,my symptoms got improved I hope duodenum got better too…

Sabaarya Community Regular
Sabaarya
Posted
  • Author

Hi:). Well I was told that my celiac is so mild and healing should be in 3-6 months. I don’t know. Anyways I’m worried. What about you? Have you had repeat endoscopy after initial diagnose?

yuluyouyue Contributor
yuluyouyue
Posted
13 minutes ago, Sabaarya said:

Hi:). Well I was told that my celiac is so mild and healing should be in 3-6 months. I don’t know. Anyways I’m worried. What about you? Have you had repeat endoscopy after initial diagnose?

No I haven't. I will soon as it has been 2 years,  but I am not in a hurry as I don't think there is anything more I could do even if it hasnt healed completely yet. I mean I am already very careful with food and try to live healthy. I check my antibodies every 6 months. Always fine. I don't have any symptoms either.  So I don't want to make myself worry with a possible less than perfect endoscopy result just yet. 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
1 hour ago, yuluyouyue said:

No I haven't. I will soon as it has been 2 years,  but I am not in a hurry as I don't think there is anything more I could do even if it hasnt healed completely yet. I mean I am already very careful with food and try to live healthy. I check my antibodies every 6 months. Always fine. I don't have any symptoms either.  So I don't want to make myself worry with a possible less than perfect endoscopy result just yet. 

Just received my pathology report and it states that there is no evidence of celiac sprue,no blunting or atrophy and no intraepithelial lymphocytes . Yaaaaaayyyyy:))) So happy

RMJ Mentor
RMJ
Posted
1 hour ago, Sabaarya said:

Just received my pathology report and it states that there is no evidence of celiac sprue,no blunting or atrophy and no intraepithelial lymphocytes . Yaaaaaayyyyy:))) So happy

Congratulations!  You’re doing the gluten free diet right!  

icelandgirl Proficient
icelandgirl
Posted
20 hours ago, Sabaarya said:

Just received my pathology report and it states that there is no evidence of celiac sprue,no blunting or atrophy and no intraepithelial lymphocytes . Yaaaaaayyyyy:))) So happy

Congratulations and great job on your gluten free diet!!  It's so nice to hear such good news, isn't it?  Keep up the good work!

yuluyouyue Contributor
yuluyouyue
Posted
On 12/21/2022 at 6:12 AM, Sabaarya said:

I’ll have my doctor to order those tests for me. After I got diagnosed I literally made my mom to have celiac panel test and she did it twice and every time her Gliadin IGA was positive,but other antibodies like andImmunoglobulin A Ab and tTG IgA were negative. I do tell her mom you have celiac and I probably got that from you but she refuses follow gluten-free diet,she says it doesn’t bother me,my blood levels are all normal my vitamins are normal and I’m 65 I don’t need it. I can’t understand her approach at all! So do you think she might have celiac with positive Gliadin IGA antibody? I had endoscopy last year because of anemia and occult blood in stool. I always had gastrities and acid reflux so it was not a surprise for me,but yeah that was how I diagnosed with celiac. After endoscopy last year he said you have red spots in your duodenum and he thought it was duodenitis,he actually was surprised that it turned out to be celiac. But my pathology stated that mucosa shows early celiac sprue. I really hope it got a lil bit better,my symptoms got improved I hope duodenum got better too…

Sabaaraya, did you have to do a colonoscopy to check the cause of occult bleeding or did they explain it with gastritis? 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
2 hours ago, yuluyouyue said:

Sabaaraya, did you have to do a colonoscopy to check the cause of occult bleeding or did they explain it with gastritis? 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
2 hours ago, yuluyouyue said:

Sabaaraya, did you have to do a colonoscopy to check the cause of occult bleeding or did they explain it with gastritis? 

Yes I had colonoscopy. They always make you have colonoscopy and endoscopy if there is occult blood,especially colonoscopy.

 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
11 minutes ago, Sabaarya said:

Yes I had colonoscopy. They always make you have colonoscopy and endoscopy if there is occult blood,especially colonoscopy.

 

And my doctor said that most probably it was false positive cause he couldn’t find anything,but it could be gastritis and even celiac

Darren Apprentice
Darren
Posted
On 12/22/2022 at 3:18 PM, icelandgirl said:

Congratulations and great job on your gluten free diet!!  It's so nice to hear such good news, isn't it?  Keep up the good work!

Good news! Stay strict with the diet and keep doing th 6 month bloodwork routine until you feel comfortable going to annual. All good well done. 

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


  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748
    Chels22
    Newest Member
    Chels22
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...