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Endo Results Please Advise!


kpw31

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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!


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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.


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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