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

Confusing results....


Kelloramma

Recommended Posts

Kelloramma Rookie

I have my endoscopy and colonscopy in August and have to do the gluten challenge for 3 weeks.  No problem.  The GI specialist decided to do some liver tests as my ultrasound showed cirrhosis and hepatocellular disease.  Everything was normal except my ceruplasmin and IGM antiglobulins were low.  My original IGG was high but the other celiac panel was negative so I decide to go gluten free for 4 months.  For the most part my diarrhea and severe abdominal cramps and mucous are gone.  I get the odd flareup with I am associating with having gluten.  I also went for some non traditional food testing and it showed positive for wheat but the Gi specialist dismissed the results because they are scientifically valid.  That being said the burning has returned tonight and a buscopan is helping for the most part.

I spent hours coming the internet and there seems to be an association with low ceruplasmin and low IGM (although it is rare). Priot to going gluten my previous colonoscopy was negative for everything.

 I am 100% convinced it is Celiac...or some other wierd inflammatory bowel process.  Does anyone else have this similar situation.  To be honest, I have extreme anxiety about it being something else...

Thank you so much in advance for any relevant feedback you may have.  Please note:  I got the liver results on line from the lab and I have not consulted my doctor yet....Kelly. 

 


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



Celiac.com Sponsor (A8-M):



tessa25 Rising Star

I don't know how old your daughter is so I don't know how appropriate my response is. I would try to find a simple diet one day that doesn't give her any problems. Say a piece of chicken, potatoes, summer squash and butter. If, by the next afternoon, she doesn't have any pains  write it down in the logbook and add on a simple food or two the next day. If eating a few of the basics doesn't help at all, then perhaps two weeks is too short of a time to notice a difference. If she can go a few days without pain you now have a small list of foods that don't bother her at all. As long as you keep a log, if she eats something that bothers her you will know within a day or two and can put it in the bad column. Then just gradually add on foods. Within a couple of weeks you'll have a list of safe foods and a list of bad foods

 

ironictruth Proficient

I am sorry for what you are going through. 

What IGG test was originally high? 

How advanced is the liver disease? 

Kelloramma Rookie
10 hours ago, tessa25 said:

I don't know how old your daughter is so I don't know how appropriate my response is. I would try to find a simple diet one day that doesn't give her any problems. Say a piece of chicken, potatoes, summer squash and butter. If, by the next afternoon, she doesn't have any pains  write it down in the logbook and add on a simple food or two the next day. If eating a few of the basics doesn't help at all, then perhaps two weeks is too short of a time to notice a difference. If she can go a few days without pain you now have a small list of foods that don't bother her at all. As long as you keep a log, if she eats something that bothers her you will know within a day or two and can put it in the bad column. Then just gradually add on foods. Within a couple of weeks you'll have a list of safe foods and a list of bad foods

 

Hi...it is not my daughter it is me....and I have th gluten-free client down pat...just wondering about the weird test results.  My liver is fine and I am asymptomatic. 

35 minutes ago, ironictruth said:

I am sorry for what you are going through. 

What IGG test was originally high? 

How advanced is the liver disease? 

Hello,  I am actually much better now that when I was eating glucose.  The original diagliadin IGG was high and the other panel tests normal for celiac..I dont have any liver disease, no issues, all tests fine except the weird cirrhosis that showed up on a ultrasound (checking me for diverticulitis).  I have read that celiac can cause issues with liver due to malabsorption.  My B12 has been low for many years.   Don't be sorry...I am the closest I have ever been to getting a true diagnosis...just a bit nervous....Thank you

tessa25 Rising Star
Quote

Hi...it is not my daughter it is me....and I have th gluten-free client down pat...just wondering about the weird test results.  My liver is fine and I am asymptomatic. 

Sorry, my post belongs in someone elses  question. Must have posted it here by mistake.

ironictruth Proficient
2 hours ago, Kelloramma said:

Hi...it is not my daughter it is me....and I have th gluten-free client down pat...just wondering about the weird test results.  My liver is fine and I am asymptomatic. 

Hello,  I am actually much better now that when I was eating glucose.  The original diagliadin IGG was high and the other panel tests normal for celiac..I dont have any liver disease, no issues, all tests fine except the weird cirrhosis that showed up on a ultrasound (checking me for diverticulitis).  I have read that celiac can cause issues with liver due to malabsorption.  My B12 has been low for many years.   Don't be sorry...I am the closest I have ever been to getting a true diagnosis...just a bit nervous....Thank you

I ask because deamidated gliadin can show up positive in liver disease (including cirrhosis) even absent celiac. As can a b12 deficiency. So if your biopsy is negative, that may be a differential.

Good luck with the testing. Let us know how it turns out. 

 

Victoria5289 Apprentice
On 5/12/2017 at 9:10 PM, Kelloramma said:

I have my endoscopy and colonscopy in August and have to do the gluten challenge for 3 weeks.  No problem.  The GI specialist decided to do some liver tests as my ultrasound showed cirrhosis and hepatocellular disease.  Everything was normal except my ceruplasmin and IGM antiglobulins were low.  My original IGG was high but the other celiac panel was negative so I decide to go gluten free for 4 months.  For the most part my diarrhea and severe abdominal cramps and mucous are gone.  I get the odd flareup with I am associating with having gluten.  I also went for some non traditional food testing and it showed positive for wheat but the Gi specialist dismissed the results because they are scientifically valid.  That being said the burning has returned tonight and a buscopan is helping for the most part.

I spent hours coming the internet and there seems to be an association with low ceruplasmin and low IGM (although it is rare). Priot to going gluten my previous colonoscopy was negative for everything.

 I am 100% convinced it is Celiac...or some other wierd inflammatory bowel process.  Does anyone else have this similar situation.  To be honest, I have extreme anxiety about it being something else...

Thank you so much in advance for any relevant feedback you may have.  Please note:  I got the liver results on line from the lab and I have not consulted my doctor yet....Kelly. 

 

It's corhissis of the heart I believe is what your telling me it won't be right for any reason don't worry too much.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,197
    • Most Online (within 30 mins)
      7,748

    Liburna
    Newest Member
    Liburna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.