Decreasing tTiga?

[ErinV]

Hi all-

I'm new to the community. my daughter is 4 and was first tested for celiac back when she was almost 3.  Her pediatrician tested her due to a tic that ended up being completely unrelated. Regardless, her bloodwork came back at 74 for tTiga. She had no symptoms that we could see but her doctor recommended a biopsy because her levels were so high. That came back negative.

Since then she’s had 2 more blood draws (every 6 months). One was 120 and the next was 140.  Her original gastro recommended another biopsy but we decided to wait because she’s so small and we don't think she has any symptoms.  We just had her blood drawn again and it went down to 76…

We haven’t changed her diet at all, but also haven’t tried to get her to eat a heavy gluten diet, as she does seem to avoid bread products, and she is only 4 years old.  Her doctor’s office recently changed EMRs so I can’t remember the exact numbers of all her other blood tests, but I know she was positive for both genetic markers. The endomysial antibodies were positive the first 3 blood draws, but this last time it came back negative. I’m unsure what to do from here. She’s only 4 so I hate to put her under anesthesia again when we aren’t seeing any major symptoms- no issues with constipation or diarrhea. No complaints of belly pain. She is ALWAYS very tired and enjoys laying in the floor with her blanket whenever she can. But her gastro said if that’s how she’s always been, then it’s not a symptom?

We’ve seen another Dr for a second option about a year ago. She said if her levels reached 150 or higher we could diagnose her with celiacs without a positive endoscopy result (based off of the European standards?). But now that her levels dropped, I’m unsure what to think. Are both doctors going to suggest another scope? Is there another option? I hate the idea of her having damage done without us knowing, but all her bloodwork comes back okay except for the celiac numbers. Her pediatrician says she's growing fine. 

I will be talking with her gastroenterologist either tomorrow or Tuesday. I’d love some insight on what questions to ask or what to know going into the meeting so I’m not caught off guard.  Thanks for any information you can provide!!

[plumbago]

Hello and welcome,

Could you please publish the reference ranges for each test, including tTG-IgA and the endomysial antibodies? When your daughter had her endoscopy, was she eating gluten?

I agree with your position, I would not want to subject her to another endoscopy and biopsy. It sounds like your doctor is saying that since her tiredness is not new that there's no real health status change. Personally, I don't like that assessment, and I would question it. From the bits you have posted, it does look like she has Celiac, but I would want to see a more comprehensive panel. It's good you've continued doing the blood tests, and are in general staying on top of it.

(Are there others in either your family or the child's father's family that have had Celiac?)

People without Celiac do not test positive, regardless of the level. Other moderators on this board may have more up to date information than I do, but I think that's still true.

Plumbago

Edited March 23, 2025 by plumbago

[ErinV]

Hi- thanks for the reply. Happy to give more information.

No one in my family or the fathers family has celiacs. We’ve all tested and neither of us, nor my other daughter have the genetic markers for it. 
 

these are what the lab results say:

Endomysial Antibody Titer- Normal value: <1:5 titer.  Hers were at 1:10 the past 3 times and then this time it came back on her portal as just “negative”

Her platelets this time came back at 451, and the normal range is 150-400. They have been in the normal range the past three times.

Tissue Transglutaminase Ab- 

<15.0 Antibody not detected

> or = 15.0 Antibody detected

Her Value 76.1 this time. 8 months ago it was 140, 6 months before that it was 120 and the time before that it was 72.

From what I’ve read and from the doctor, this is the most specific test for celiac and what we should focus on the most. 76 is still extremely high, but why did it decrease when nothing in her diet has changed?

[trents]

@ErinV, from you first post: " Her doctor’s office recently changed EMRs so I can’t remember the exact numbers of all her other blood tests, but I know she was positive for both genetic markers."

But then you say in your most recent post, "We’ve all tested and neither of us, nor my other daughter have the genetic markers for it."

Those two statements are in direct contradiction to one another. Where did she get the genes for potential celiac disease then?

[Scott Adams]

In Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

 

[ErinV]

Thanks for the information.  I get not using a biopsy to diagnosis.  In fact, when we had the original biopsy done, my husband and I were very hesitant and didn't understand the need for it.  The doctor kept telling us it was the only way to diagnosis Celiac, yet also said there's no other diagnosis that would have given her positive EMA-IgA and tTG-IgA results.  So, we didn't understand.  Her biopsy came back negative, but because she wasn't even 3 at the time, the dr said she didn't want to go too far down into her system, and it was possible the damage was there and just not biopsied.  So, still no clear answer, which was frustrating.

I'm confused now though with these results.  Why did her EMA-IgA results suddenly come back negative after the first 3 tests all showed positive?  And why is her tTG-IgA going down?  Could it be as simple as lab error?  Does the actual number matter, or the fact that it is so positive tell us everything we need to know?  I don't want to scope her again.  She has no symptoms that we can pin point to Celiac, but also aren't sure of what we don't know.  Is her tiredness a symptom that we just aren't paying enough attention to?  If we decide these results are enough, and start taking away all gluten products, how will we know if it is truly Celiac?  Another bloodtest in 6 months with lower tTG-IgA numbers could mean the diet is working, but couldn't they also decrease on their own like they did this time?

[Scott Adams]

If was eating less gluten between tests, it could account for the change in test results to false negative, but given all you shared celiac disease is the most likely explanation.   I also would try to avoid an endoscopy done on a child, especially given the positive blood test results along with symptoms when she eats gluten (tiredness is definitely one of many symptoms). If her symptoms go away on a gluten-free diet, this is another indicator that she likely has celiac disease.