Confused By Test Results

[alcie]

I was tested a few years ago for Celiac and came back negative.  My GI told me I might be a little gluten sensitive but he didn't think it was a big problem for me long term.  My 6 year old daughter has also had GI issues for years and after trying dairy free and various medicines hoping she would "grow out of it" we recently had her tested for Celiac. 

 

She and I both came back negative on everything but IgG and I don't carry either gene (hers were not tested).  Her ped GI told us we could get an endoscopy or wait to see what happens.  We didn't want to schedule her for an endoscopy so I requested a copy of my old medical records to see how my biopsy results came out.  We also put her on a gluten free diet and within days she started saying her stomach feels better (it used to hurt almost all the time based on what she would tell us) and her appetite has also improved somewhat.

 

I'm pretty sure we're both NCGI but when looking at my old lab reports it looks like there was damage and from what I've read NCGI does not cause damage?  Can anyone help me interpret these?

 

Elevated IgG at 45.1 (ref <10), all other values normal (he ran a full celiac panel)

DQ2, DQ8 negative

The notes from the procedure read: Granular mucosa, folds slightly flattened and/or irregular to scalloped. 

Lab results from biopsies: Normal mucosa.  Normal IEL's.  The numbers of mast cells were tested and came back high in multiple biopsies.   

 

 

 

 

 

 

 

[nvsmom]

I'm pretty sure we're both NCGI but when looking at my old lab reports it looks like there was damage and from what I've read NCGI does not cause damage?  Can anyone help me interpret these?

 

Elevated IgG at 45.1 (ref <10), all other values normal (he ran a full celiac panel)

DQ2, DQ8 negative

The notes from the procedure read: Granular mucosa, folds slightly flattened and/or irregular to scalloped. 

Lab results from biopsies: Normal mucosa.  Normal IEL's.  The numbers of mast cells were tested and came back high in multiple biopsies.   

 

Some doctors believe that the AGA IgA and AGA IgG (anti-gliadin antibodies) could indicate NCGS (also called NCGI) as well as celiac disease but that is not a widely accepted belief.  

 

The tTG IgA and tTG IgG (tissue transglutaminase) will cause damage to the endomysial layer of the intestines.  Those tests will NOT be positive because of NCGS.  A weakly positive result (like an 11 when the upper normal range is 10) can be caused by thyroiditis, diabetes (T1), liver disease, crohn's, colitis, or a serious infection in about 5% of all positive results.

 

The EMA IgA indicates more advanced damage to the intestines (is being attempted) and indicates celiac disease.

 

The DGP IgA and DGP IgG tests (deaminated gliadin peptides) are similar to the AGA but much more reliable and specific.  I have heard a very few doctors state positives can be caused by NCGS, but it is not a widely accepted thought.

 

Your positive IgG based test (which was probably AGA IgG, tTG iGG, or DGP IgG) was very positive - over four times the normal limit!  I can not understand WHY your doctor dismissed celiac disease so easily!    I'm guessing that it was because of your negative genetic tests but not all celiacs have those genes.  About 97% of celiacs do have at least one of those genes, but 3% of celiacs do not have those genes - we have a couple of people with that around here. It is not common, but it does happen.

 

Take a look at page 10 of this report: Open Original Shared Link Your endoscopy has visible signs commonly seen among celiacs (scalloped and flattened folds) but your biopsy was negative.  That could be because they missed the patchy damage which can happen in a minority of cases (up to 20%).  Damage my have been there but they might missed the damage or taken the samples incorrectly.... or it could be correct and there was not measureable damage.

 

You are right, NCGS does not cause intestinal damage - ever.

 

I would find out what test the "positive IgG" was IgG is , in itself, a blood test to measure immune function and not a celiac disease test.  I am guessing that you had an IgG based celiac disease test done but you should make sure it wasn't just the total serum IgG (immunoglobulin G) test run.

 

I would eat as though you have celiac disease - 100% gluten-free with no cheats or contamination risks.  Better safe than sorry.  NCGS is sometimes misdiagnosed early celiac disease, so I would definitely treat it or keep an eye on it and retest... although I would lean towards staying 100% gluten-free for the sake of your daughter's health if there is any doubt there.

 

If you choose to retest, you'll need to eat the equivalent of about 1-2 slices of bread per day in the 8-12 weeks prior to the blood test, or for 2-4 weeks prior to the endoscopy.

 

Best wishes.