+ bloodwork - endoscopy.. then + bloodwork and another + bloodwork.. next endoscopy??

[joleenrae]

My daughter was tested at her annual appointment when she turned 4 because her brother has celiac's. She has no symptoms. She eats a lot of gluten. 

Blood work round #1 March 2024: 

-          Endomysial IgA Ab: Negative  (Range: Negative)

-          Gliadin IgA: <10.0 U/ml  (Range: <20.0 Negative)

-          IGA: 93.43 mg/dL  (Range: 27.00 - 195.00)

-          TISSUE TRANSGLUTAMINASE IGA: 9.1 U/ml  (Range: <4.0) *** this was high. the range changes for the next one, but it was noted that it was about double the range. 

We went for an endoscopy in May 2024 and it was negative. 

Blood work round #2 October 2024:

-          ENDOMYSIAL ANTIBODY TITER: 1:5 titer  (Range: <1:5) **flagged as high

-          ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER: POSITIVE  (Range: NEGATIVE) **flagged because its not negative

-          IMMUNOGLOBULIN A  TISSUE TRANSGLUTAMINASE AB, IGA:  28.8U/mL  (Range: 22 – 140.  <15.0  =Antibody not detected. >or= 15.0 =Antibody detected.) **flagged high but the ratio/range was different and about double. Note says: Serological evidence for celiac disease is present.

Blood work round #3 January 2025:

-          TTG IGA: 28.1U/mL  (Range: 22 – 140.  <15.0  =Antibody not detected. >or= 15.0 =Antibody detected.)

Now we are scheduling another endoscopy. My main concern right now is if the endoscopy is negative again…where does that leave us??? Public Schools and daycare will not feel her gluten free if its not an official diagnosis.

[trents]

Since she is asymptomatic and her first biopsy was negative I would not assume she has developed celiac disease. If her upcoming biopsy shows evidence of mucosal damage you have the firm evidence you need to trigger the gluten-free protocol at the preschool. There are other causes for mildly elevated tTG-IGA levels besides celiac disease. Studies are all over the map with this statistic but there is somewhere between a 10% and an almost 50% chance that your daughter will develop celiac disease since she has a first degree relative who is a celiac (her sister).

The important thing in this scenario is to continue to monitor the situation via testing and symptoms. You are already doing this so kudos to you and your doctors.

But one question I have is, are the blood samples being tested by the same lab in each case? Different labs build these tests a little differently and there is no industry standard. So, to compare her tTg-IGA test scores from one time to the other is only useful if the analysis is being handled by the same lab.

Edited January 14 by trents

[joleenrae]

The first lab was different because Allina switched which lab they work with in between March and October. But October and January were the same lab. All through Allina but two separate labs.  

[Scott Adams]

I lean towards very probably celiac disease due to the two positive tTg-IgA blood tests. Although there are other things that might cause this test to be elevated in certain individuals, the most likely cause by far would be gluten sensitivity. 

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. 

 

 

[trents]

Have you and you and the children's father been tested?

[joleenrae]

We have been tested and tested negative. But we have not done the gene testing. 

[Celiacandme]

I hope you don't have to wait too long until her endoscopy. Is she able to bring her lunch with her in the meantime?

[joleenrae]

We had the follow up endoscopy 1 year out from the first one. We left that day and they said visually it looked good so he thought she'd be negative again. Results came back this week as celiac sprue present and level Marsh 3A. So she doesn't have much damage but she is now positive for celiacs... Just thought I'd post in case in takes anyone else a year to get a diagnosis.

[Scott Adams]

It's too bad they didn't diagnose her based on the positive tTg-IgA blood tests + family history. Marsh 3A does confirm celiac disease, but it’s great that the damage isn’t extensive! Even with moderate changes, symptoms can vary widely. Strict gluten-free eating should help heal the gut over time.