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

Endo Results Please Advise!


kpw31

Recommended Posts

kpw31 Rookie

My daughter's biopsies all came back normal so the GI said they've ruled out celiac, the only blood test that was elevated was TTG-IGG, everything else in the full celiac panel was normal. 

 

Why the high IGG then?  I know this does not rule out gluten intolerance, should I still try her with a gluten free diet?  I hate to make a complete dietary change for a 5 year old if it's not necessary but I guess we won't know about an intolerance until we try.  They also said they'd like to do a gastric emptying study next so we're scheduled for that next week.  Any thoughts or advice would be very much appreciated. Thanks!


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

What are her symptoms?

 

Does this GI have a lot of experience with Celiac Disease and Non Celiac Gluten Sensitivity -- sadly, not all GIs do.  I find it curious that he/she would completely rule out Celiac Disease with a positive antibody test if they have extensive experience with young children.

 

Be sure to ask for a written or electronic copy of both the pathology and procedural reports from the endoscopy along with any blood tests.  This data may become very important to you down the road.

 

And yes....if your child has any symptoms associated with Celiac Disease and a positive DGP IgG, then it is of great value to completely remove ALL gluten one the endoscopy is complete for at least 3-6 months to monitor symptoms.  There is no test for NCGS except elimination of gluten.

 

Good Luck to your family :)

 

PS...make sure to have the full celiac antibody panel run again after 3 months completely gluten free -- that positive DGP-IgG means your daughter is making antibodies to one of the peptides (Gliadin) that makes up the protein in Gluten.

kpw31 Rookie

it wasn't DGP though, it was TTG which I can never find as much information on.

 

They're sending me copies of the endoscopy report too, I don't know if I should get a second opinion.  I feel pretty confident in my dr we're going to one of the top children's hospitals in the US for this. At the same time I know this is all fairly new so I have to think about it.

GottaSki Mentor

Oops sorry tTG -- same advice -- remove gluten now that tests have been complete and re-test the full antibody panel at 3 months.

kpw31 Rookie

I feel like I've asked this a million times but is there any other condition or issue, other than a gluten issue, that would cause a "positive" TTG IGG? (an infection, crohn's disease, etc).  I just feel like I can never get a clear cut answer and am so frustrated.

GottaSki Mentor

Yes a temporary rise in Tissue Transglutaminase Antibodies - either IgA or IgG is possible.  The keys (in my opinion) would be:

 

Symptom history.

Other serological results.

Endoscopy results - both observation and pathology.

 

If you have no symptoms of Celiac Disease...simply wait and re-test in three months.

 

It has been quite some time since I have personally researched each of the tests in the panel...perhaps someone else can provide current papers to support other causes of a rise in the tTG.

powerofpositivethinking Community Regular

here's a link about ttg from the Chicago Celiac Center:

 

Open Original Shared Link

 

 

I feel like I've asked this a million times but is there any other condition or issue, other than a gluten issue, that would cause a "positive" TTG IGG? (an infection, crohn's disease, etc).  I just feel like I can never get a clear cut answer and am so frustrated.


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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      1

      3 year old gluten intolerance?

    2. - plumbago replied to plumbago's topic in Related Issues & Disorders
      2

      Anyone else with very high HDL?

    3. - Nicbent35 posted a topic in Introduce Yourself / Share Stuff
      1

      3 year old gluten intolerance?

    4. - trents replied to plumbago's topic in Related Issues & Disorders
      2

      Anyone else with very high HDL?

    5. - plumbago posted a topic in Related Issues & Disorders
      2

      Anyone else with very high HDL?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,889
    • Most Online (within 30 mins)
      7,748

    Missymid
    Newest Member
    Missymid
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
    • plumbago
      Yes, well, that's what we have been told, probably ever since the different types of cholesterol were identified. It's what most of our primary care providers are still telling us, it's what the commercials tell us. But researchers (up until now at any rate) have been learning a great deal about HDL. Nevertheless, the universe of what we still don't know about HDL is vast. And since I can sustain only a 35% level of understanding when I hear lectures on HDL, I will have to nutshell my layperson's understanding, which is that at this time, it's possible or likely that HDL-C levels are best understood as U-shaped, that there's a sweet spot right there in the dip of the "U" and anything before or after is not ideal. This is why I said what I did earlier about the "good" and the "bad" being oversimplifications. The research has long since moved on. There's a lot of talk about how the focus should be on functionality, that you want to make sure that all that HDL is performing how it should be. And now, that's it, I've exhausted my ability to explain my understanding of HDL!
    • Nicbent35
      Hi, I have a 3 1/2 year old daughter..I would say she has had tantrums since even before she was a year old. Challenging but not extreme. Lately, her behavior had gotten extreme. Just so angry, yelling mean hateful things, completely defiant, was causing a lot of disruption in our house, I felt like I had lost the little girl I knew, we were baffled.   Something just didn’t seem right to me, I have been researching and read about how gluten can sometimes affect kids behavior. I took her off gluten a week ago tomorrow. The next couple days after I took her off gluten the days were much easier. About 4 days in she had one of the worst days I’ve seen her have tho. I kept on with it tho and the past two days she has been angelic. Is this common that if it is gluten that she could still have a bad day like that a few days after taking her off of it? Should I try to reintroduce it at some point to see if it’s really a gluten intolerance? I’m not gonna lie, if she continues with the great behavior she’s had the past couple days I will probably be scared to reintroduce it but don’t want her to have to avoid gluten if it’s not necessary. Anyone have advice? 
    • trents
      But HDL is considered to be the "good" cholesterol, right?
    • plumbago
      Since some time between 2010 and 2014, my HDL-C has been going up and you might even say elevated. The last time I could find in my records that my HDL was normal was in 2014 when it was 67. Last week, it was 101, and it’s been 88 and above since about 2015. A significant life event happened in 2010 when I was diagnosed with Celiac disease and in May of that year began a gluten free diet. An informal perusal of a previously posted topic on HDL on this forum shows that a lot of members responding had high normal or high levels of HDL, so it doesn’t seem to be that unusual. But because my HDL numbers have been so high for so long, I am now officially concerned enough that I will probably reach out to a cardiologist who specializes in lipids. I would like to know if I should have a genetic test, as a specific genetic mutation can be one reason for high HDL numbers. I will also ask if he/she thinks a cardiac work up including a coronary artery calcium score should be considered. I think by now most of us are done with the ridiculous good and bad cholesterol labels; the amount of what we don’t know about HDL is quite large. For me my questions include is it a matter of production or an inability to clear HDL, and are the high levels having an effect on my vasculature (or a result of a less than optimal vasculature)? My last TSH level was normal, so it's likely not a thyroid issue. I also take B12 regularly. I’ve read that niacin can cause HDL levels to go up, but B12 is not niacin, and I could find no definitive link between robust B12 supplementation and abnormally high HDL levels. Any input is appreciated! Plumbago
×
×
  • Create New...