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

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
      131,635
    • Most Online (within 30 mins)
      7,748
    TomA
    Newest Member
    TomA
    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

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.