Help understanding test results after negative biopsy

[englishbunny]

After testing positive for a celiac antibody a few months ago, I had a biopsy.  Came back normal, but the doc only took two samples from duodenum so given all I have read about patchy damage I am concerned if it was an accurate result. 

They just redid my labs with gene testing included, here are the results.  Again, only high antibody is deamidated IGA (it's actually down from 124 a few months back), and I have one genetic marker.  I have been eating lots of gluten in order to try and get accurate results.  I also have Hashimotos.  Reason they looked at celiac at all was despite thyroid levels being fine I am suffering extreme fatigue, muscle aches, and my digestive system seems to fluctuate from constipation to diarrhea with some nausea and bloating.  But I'm not someone who seems to get super sick every time I eat gluten so celiac would never have occurred to me.

Last time I did labs my ferritin was low but it seems to have recovered a little.

I would love some insight. My doctor is super confusing and dismissive so I am thinking of taking these results to another doctor for a second opinion.  Thanks!

IMMUNOGLOBIN A 135
(Reference range: 47-310 mg/dL)

(TTG) AB, IGG <1.0
<15.0 Antibody not detected > or = 15.0 Antibody detected

(TTG) AB, IGA <1.0
<15.0 Antibody not detected > or = 15.0 Antibody detected

GLIADIN (DEAMIDATED) AB (IGA) 96.8 HIGH
<15.0 Antibody not detected > or = 15.0 Antibody detected

GLIADIN (DEAMIDATED) AB (IGG) <1.0
<15.0 Antibody not detected > or = 15.0 Antibody detected

ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER- NEGATIVE

HLA DQ2 Negative
 
HLA DQ8 Positive
 
HLA VARIANTS DETECTED: HLA DQA1*
03
 
HLA DQA1*
05

HLA DQB1*
0301
 
HLA DQB1*
0302

IRON, TOTAL 42
Reference Range: 40-190 mcg/dL

% SATURATION 14 LOW
Reference Range: 16-45 % (calc)

IRON BINDING CAPACITY 309
Reference Range: 250-450 mcg/dL (calc)

FERRITIN 20
Reference Range: 16-232 ng/mL

 

[Scott Adams]

HLA DQ8 Positive - This means you have the genes to get celiac disease, which ~40% of people have as well, although only ~1% develop the disease.

GLIADIN (DEAMIDATED) AB (IGA) 96.8 HIGH
<15.0 Antibody not detected > or = 15.0 Antibody detected

Since your biopsy was negative (you're correct that at least 6 samples should have been taken), this could mean non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

My question is, were you doing a proper gluten challenge before your tests and eating at least 2-4 slices of wheat bread worth of gluten per day in the 6-8 weeks before your blood screening, and at least 2 weeks before your biopsy?

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

 

[englishbunny]

29 minutes ago, Scott Adams said:

HLA DQ8 Positive - This means you have the genes to get celiac disease, which ~40% of people have as well, although only ~1% develop the disease.

GLIADIN (DEAMIDATED) AB (IGA) 96.8 HIGH
<15.0 Antibody not detected > or = 15.0 Antibody detected

Since your biopsy was negative (you're correct that at least 6 samples should have been taken), this could mean non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

My question is, were you doing a proper gluten challenge before your tests and eating at least 2-4 slices of wheat bread worth of gluten per day in the 6-8 weeks before your blood screening, and at least 2 weeks before your biopsy?

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

 

Thank you so much, Scott.  This is very helpful.

Yes, I was eating that amount of gluten before both of the blood tests and especially in the weeks before the biopsy.

Could there be anything else causing the elevated DGP-IgA other than celiac of NCGS?  For example Hashimotos?  I'm wondering if the fluctuating iron issues could also be caused by NCGS?

[Scott Adams]

Great questions! Elevated DGP-IgA is most commonly linked to celiac disease or non-celiac gluten sensitivity (NCGS), but other factors could play a role. Other autoimmune conditions, intestinal permeability (leaky gut), or even food sensitivities (e.g., dairy or FODMAPs) could also contribute to similar symptoms or test results. Fluctuating iron levels are common in celiac and NCGS due to malabsorption, but other causes like menstrual blood loss, dietary deficiencies, or gut infections (e.g., H. pylori) should also be considered. If celiac is ruled out, trying a strict gluten-free diet for several weeks can help determine if NCGS is the issue. Working with a healthcare provider to investigate further is key—let us know how it goes!

[englishbunny]

They did a lot of stool samples so I know they ruled out parasites and bacterial infections. It sounds like the next step is trying to find a doctor I trust for a second opinion and to try and figure out if it’s celiac or NCGS. Thanks again so much. Honestly it’s been so hard to find any support until I found this forum 🙏🏻