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

Only Endoscopy?

ronswanson

Recommended Posts

ronswanson Newbie
ronswanson
Posted

I had an endoscopy last week because I am preparing for weight loss surgery.  The doctor called me two days ago and told me that I have inflammation and atrophy diagnostic of Celiac.  I have had digestive and gastric issues for many many years but I had always had it in my head that it was just a part of being overweight and I never really questioned it since the symptoms are not that severe.

 

My question is, can you be diagnosed WITHOUT the IgA testing?  I do have an appointment on Monday for the blood testing but I was just curious.  Can that test be negative with a positive endoscopy?  

 

In everything I have read so far, it seems that the IgA testing is always done first, which leads to endoscopy.  

 

Thanks in advance.

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Welcome to the community.

 

Yes, you can be diagnosed based on endoscopy and biopsy alone. I was. The blood tests are considered screening tools to decide whether an endoscopy is indicated.

 

A false negative on the IgA tests can happen for several reasons.

CajunChic Explorer
CajunChic
Posted

Yes, it is possible to be seronegative (negative blood work) and have a positive biopsy. There are different combinations of ways people have been diagnosed. Many celiacs are IgA deficient, so if thats the case all IgA tests are invalid and you'll have to be tested on IgG tests. Whatever the tests show, you're probably definitely a celiac based on your biopsy.

Check the newbie thread for great advice on going gluten free, it helped me so much!

Good luck on your gluten free journey and welcome!

ronswanson Newbie
ronswanson
Posted
  • Author

Thank you both for your reply.  This news has boggled my mind.  I am very much looking forward to this journey and I really hope that it has been the cause of so many symptoms that will now go away.  Fingers crossed.

 

Thank you all for being here and creating this informative place!

JodyM75 Apprentice
JodyM75
Posted

I went in for a routine endoscopy the beginning of April, I've had a hiatal hernia for 20+ years.  I asked my doc to do a celiac test to rule it out.  I also have gastroparesis (delayed stomach emptying) and that is one of the symptoms of celiac.  I figured we would be able to rule it out as a problem

 

Wrong-o, the test came back positive for celiac.  I had the blood for the celiac panel taken just this past Friday and I'm still waiting on results.  So, yeah, diagnosis can happen opposite of the usual blood tests first/biopsy later method....

kareng Grand Master
kareng
Posted

I thought I saw somewhere that people with Celiac can only have certain weight loss procedures. I'm looking to see if I find it. I did find this :

Open Original Shared Link

"METHODS:

We report 5 morbidly obese patients that were diagnosed of celiac disease during preoperative work-up for bariatric surgery. Diagnosis was suspected during routine upper endoscopy, and confirmed by histology and positive celiac disease-specific serology."

ronswanson Newbie
ronswanson
Posted
  • Author

Thanks for that link. That is interesting. I did speak with my surgeon yesterday and he has officially cleared me for sleeve gastrectomy surgery. I am going to do more research.

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

Celiac.com Sponsor (A8-M):


thepeach80 Rookie
thepeach80
Posted

Being a new diagnosis, I'd wait on surgery. See what going gluten free does for you. Having gastric surgery is a big change and requires lots of diet changes and often B12 supplements. Gluten free is a big enough change for most people to handle without adding more to it. I was like you, we did things backwards. Scope, which showed damaged consistent with Celiac, and then blood work. I was told my blood work was negative but some would call it a weak positive and I feel 100x better off gluten so that is how I will stay. It's been a year now.

ronswanson Newbie
ronswanson
Posted
  • Author

Being a new diagnosis, I'd wait on surgery. See what going gluten free does for you. Having gastric surgery is a big change and requires lots of diet changes and often B12 supplements. Gluten free is a big enough change for most people to handle without adding more to it. I was like you, we did things backwards. Scope, which showed damaged consistent with Celiac, and then blood work. I was told my blood work was negative but some would call it a weak positive and I feel 100x better off gluten so that is how I will stay. It's been a year now.

 

I get your POV but I can't even imagine delaying surgery now. It has been over a year of mentally and physically preparing myself for this.  At this point, I feel prepared to take on almost anything.

kareng Grand Master
kareng
Posted

I get your POV but I can't even imagine delaying surgery now. It has been over a year of mentally and physically preparing myself for this.  At this point, I feel prepared to take on almost anything.

I looked up a few things and it seems the sleeve is recommended for " sprue ". That is an old name for Celiac Sprue. Google autoimmune and bariatric and you should find things like that. The good thing about the sleeve is you can adjust/ remove it. Is that correct? To me it seems less drastic than a bypass. I have a few friends with that, and I am not convinced that was good for their health.

ronswanson Newbie
ronswanson
Posted
  • Author

I looked up a few things and it seems the sleeve is recommended for " sprue ". That is an old name for Celiac Sprue. Google autoimmune and bariatric and you should find things like that. The good thing about the sleeve is you can adjust/ remove it. Is that correct? To me it seems less drastic than a bypass. I have a few friends with that, and I am not convinced that was good for their health.

You are thinking of the band surgery, which applies a band around the top of the stomach.  The sleeve is not reversible but it is also not a malaabsorptive (sp?) procedure like the bypass procedures are.  Basically, it cuts your stomach down to almost an 1/4 of its size so you still absorb all of what you eat but can only eat much smaller portions. I am not a sweets person so the gluten I need to eliminate consists more of savory gravy's in various foods along with the breads and pastas.  I have already been mentally preparing myself for the lose of those anyway so I really do feel prepared either way.  I will still be having an in-depth conversation with the surgeon and my gastro about it.  I an appointment on Monday to meet with both.

  • 2 weeks later...
ronswanson Newbie
ronswanson
Posted
  • Author

Hi all.  So I finally got my blood results back and all were normal.  They ran Endomysial IgG, TTG IgG and IgA and IgA levels.  My IgA level was on the low side of normal but everything else was well within normal range.  When I went in for the blood work, the gastro told me that I had what they call scalloping of the intestines with some atrophy commonly seen in Celiac.  I haven't spoken to him yet (saw my results online) but I am still bothered by negative results.  I plan to change my diet anyway and eliminate gluten from it because I think that could only help my intestines at this point.  However, there seems to disagreement between doctor opinion in scientific articles as to whether a negative serology with positive endoscopy is truly diagnostic of Celiac.  I'm confused and do wonder if something else may be going on.  Hopefully nothing even more serious.

Archived

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

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


  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748
    Jean Kemling
    Newest Member
    Jean Kemling
    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

    • 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.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...