Positive Blood Test/Negative Scope

[Danadarlene]

My daughter had her blood drawn a few months ago and these were her numbers.  We did her scope last week and got the results back today and she is negative for celiac.  

Tissue Transglutaminase IGA 5
> or = 4 Antibody Detected

Gliadin (Deamindated) AB (IGG)-29
> or = 20 Antibody Detected

I had my blood work done this week and below are my numbers.  I also had low calcium and low blood protein.  I am schedule for my first appointment with the GI at the end of December.   Could I have celiac and my daughter have it, but she is just now developing it and it isn’t showing on the scope yet?    I am just confused on how she tested positive, but got a negative scope and now I have tested positive.

Gliadin (Deamindated) (IGA)-14.4
> or = 14.9 Antibody Detected

Gliadin (Deamindated)  (IGG)-33.4 (H)
> or = 14.9 Antibody Detected

Tissue Transglutaminase IGA and IGG both negative

[trents]

"Could I have celiac and my daughter have it, but she is just now developing it and it isn’t showing on the scope yet?"

I think you hit the nail on the head. Her numbers are not strongly positive so there is little or no damage yet. Now is the time to get on top of it with gluten free eating for her. Negative scopes with positive bloodwork is not that uncommon in the beginning stages of celiac disease, especially with young people. How old is your daughter? Of note is the fact that your tTG-IGA is negative. That test is the centerpiece of the celiac panel. It is really good that a full panel was ordered in your case because many docs will only order the tTG-IGA and so some who actually have celiac disease are missed.

[Danadarlene]

She is 12.  Her scope actually showed some abnormal ridges, but the biopsies show no celiac. They did find inflammation in her stomach.  I requested for my doctor to run the full panel since her blood work came back positive and I was certain she had celiac based on some of her symptoms (constipation, stomach pain, lactose intolerance). 

[trents]

Even though the evidence that your daughter has celiac disease is not strong at this point, the real tipper would be if you put her on a gluten free diet and her symptoms dramatically improve.

[Scott Adams]

Another thing to know is that ~10x more people have non-celiac gluten sensitivity than celiac disease, but there is still no test for NCGS.

[Kate333]

If you/your daughter were on reduced gluten or gluten-free diets BEFORE the blood tests and/or endoscopy with biopsies, that could explain the "normal" lab results and negative biopsy for celiac disease.    

[trents]

NCGS should not produce positive antibodies, however, would it?

[Danadarlene]

5 hours ago, Kate333 said:

If you/your daughter were on reduced gluten or gluten-free diets BEFORE the blood tests and/or endoscopy with biopsies, that could explain the "normal" lab results and negative biopsy for celiac disease.    

She wasn't gluten free, but she also does not like most foods that contain gluten so she doesn't eat as much of it.   Her numbers, according to the test, are elevated. Obliviously, they aren't super high. The GI doctor did tell us before doing the test that if the scope came back negative, it could mean that she is just early in her celiac diagnosis. 🤷🏼‍♀️   

 

[Scott Adams]

18 hours ago, trents said:

NCGS should not produce positive antibodies, however, would it?

Possibly. Where do those fit who are just below the cut off on their antibody tests? They don't have celiac disease, but are having an autoimmune reaction to gluten...just not strong enough to call celiac disease.

[RMJ]

21 hours ago, Danadarlene said:

The GI doctor did tell us before doing the test that if the scope came back negative, it could mean that she is just early in her celiac diagnosis. 🤷🏼‍♀️   

 

That actually sounds like a smart doctor!  Some would just say “not celiac” and not give you any more assistance.

You might try having her go completely gluten free and see if the antibody levels return to normal levels.