Positive Blood Test, Negative Biopsy

[Jen2114]

Hi everyone—

 

I have been having lots of GI symptoms recently so my doctor ordered a celiac blood panel. Most of it came up positive. Earlier this week I went in for an upper Endoscopy and my biopsies only came back with a Marsh score of 1. 
 

Has anyone had experience with this? Going today to have the genetic blood work done. 
 

These are the blood work results:

t-Transglutaminase (tTG) IgA- 14 , (scale 0-3)

t-Transglutaminase (tTG) IgG- 4 (scale 0-5)

Endomysial antibody- positive

Deamidated Gliadin Abs, IgA- 57 (scale 0-19)

Deamidated Gliadin Abs, IgG- 39 (scale 0-19)

 

[trents]

Not much damage to the villi yet. Must have caught it early. It is normal for some celiac tests to be negative when others are positive. Some are more specific and/or more sensitive than others. The tTG-IGA and Endomysial antibody tests are very specific for celiac disease and the tTG-IGA is also very sensitive.

[Emma84]

On 5/12/2023 at 12:37 PM, Jen2114 said:

Hi everyone—

 

I have been having lots of GI symptoms recently so my doctor ordered a celiac blood panel. Most of it came up positive. Earlier this week I went in for an upper Endoscopy and my biopsies only came back with a Marsh score of 1. 
 

Has anyone had experience with this? Going today to have the genetic blood work done. 
 

These are the blood work results:

t-Transglutaminase (tTG) IgA- 14 , (scale 0-3)

t-Transglutaminase (tTG) IgG- 4 (scale 0-5)

Endomysial antibody- positive

Deamidated Gliadin Abs, IgA- 57 (scale 0-19)

Deamidated Gliadin Abs, IgG- 39 (scale 0-19)

 

Is a marsh score of 1 considered negative? I thought any damage indicated positive for celiac 

[Jen2114]

5 minutes ago, Emma84 said:

Is a marsh score of 1 considered negative? I thought any damage indicated positive for celiac 

From what my GI told me, 2 and up with a positive blood test indicates a Celiac diagnosis. Since mine was a 1 she said she wouldn’t diagnose me with it yet unless the genetic blood test came out positive.

 

So confusing to me because I thought the same!

[Emma84]

28 minutes ago, Jen2114 said:

From what my GI told me, 2 and up with a positive blood test indicates a Celiac diagnosis. Since mine was a 1 she said she wouldn’t diagnose me with it yet unless the genetic blood test came out positive.

 

So confusing to me because I thought the same!

Didn’t you have elevated antibodies ? 

[Jen2114]

25 minutes ago, Emma84 said:

Didn’t you have elevated antibodies ? 

Yes! Antibodies were positive and almost the whole celiac panel was very high.

[Emma84]

27 minutes ago, Jen2114 said:

Yes! Antibodies were positive and almost the whole celiac panel was very high.

I’m am not a doctor but I think that’s pretty indicative of celiac. Your marsh scale may have only been 1 because it’s a new development. How long have you had symptoms for? 

[Tara V]

Hello,

I am hoping someone can help shed some light for me. I am a 51 year woman who a little over 2 years had a weak positive TTG of 4 (normal <4) negative EMA. I have no symptoms but was tested because I have reactive hypoglycemia and my doctor thought maybe a malabsorption problem. After the positive serology I had a endoscopy and biopsy showed mild IEL’s but no villous atrophy. My doctor then send me for genetic testing and I do carry DQ2 and repeated the TTG which was then negative and I was told no celiac. More than 2 years have passed and my GI wanted to repeat endoscopy which again showed IELs but again no villous atrophy. Repeated the TTG again and now it’s weak positive again at 5 and repeat EMA still negative. I have been eating gluten the entire time. So my question is can you have celiac for years and never develop villous atrophy? And remain weak positive ttg on and off? My only other health issue is a increased bone specific alkaline phos for the last 5 years but whole body bone scan was negative and dexa scan showed mild osteopenia which is not unusual for my age group. 

[trents]

Welcome to the forum, Tara V!

In answer to your question, we do have reports on this forum from those who have positive celiac antibody scores (and not just borderline) but no villous atrophy. Frequently, we are exposed to things like this on the forum that defy our little boxes and check off lists. IMO, we are learning that gluten disorders have a larger variety of expression than we used to think. We have known for a long time, for instance, that there is an epidermal expression of gluten intolerance called dermatitis herpetiformis and most of those folks also have villi damage. But a small percentage of them don't.

There is also a gluten disorder known as NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not blunt the villi. Yet, it can cause other serious health issues such as ataxia. Some experts feel that NCGS can be a precursor to celiac disease.

Now, having said all that, we don't even know if gluten itself poses any issues for you. But, have you considered MCAS (Mast Cell Activation Syndrome)\histamine intolerance and SIBO (Small Intestine Bacterial Overgrowth)? I urge you to do some research into these.

[Tara V]

6 minutes ago, trents said:

Welcome to the forum, Tara V!

In answer to your question, we do have reports on this forum from those who have positive celiac antibody scores (and not just borderline) but no villous atrophy. Frequently, we are exposed to things like this on the forum that defy our little boxes and check off lists. IMO, we are learning that gluten disorders have a larger variety of expression than we used to think. We have known for a long time, for instance, that there is an epidermal expression of gluten intolerance called dermatitis herpetiformis and most of those folks also have villi damage. But a small percentage of them don't.

There is also a gluten disorder known as NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not blunt the villi. Yet, it can cause other serious health issues such as ataxia. Some experts feel that NCGS can be a precursor to celiac disease.

Now, having said all that, we don't even know if gluten itself poses any issues for you. But, have you considered MCAS (Mast Cell Activation Syndrome)\histamine intolerance and SIBO (Small Intestine Bacterial Overgrowth)? I urge you to do some research into these.

Thank you for your reply. I will definitely look into these. Would any of these cause a weak positive TTG?

[trents]

12 minutes ago, Tara V said:

Thank you for your reply. I will definitely look into these. Would any of these cause a weak positive TTG?

I don't think so but these other two conditions I mention are not infrequently found in the celiac community. But I wonder if you have "celiac light" (my invented term) such that your body is compensating so far for the damage that the inflammation usually causes in celiac disease. Just for your information, we often get reports of young children with significantly elevated antibody scores with no villi damage. Their bodies are so resilient.

But one question. Did the physician order a total IGA test to check for generally low immune system IGA levels? If total IGA is low it will suppress individual IGA test scores such as the tTG-IGA and give false negatives sometimes.

[Tara V]

Yes and my total IGA is normal

[trents]

One option to consider is to commit to eating gluten free for say, 6 months and then have your tTG-IGA rechecked. If it is within normal range that would suggests you are indeed having a light reaction to gluten.

We know there are certain medical conditions besides celiac (e.g. Crohn's and some parasitic infections), some foods (e.g., the dairy protein, casein) and some medications (e.g., NSAIDS and a certain blood pressure med) that can cause villi blunting but I hesitate to say that this would translate necessarily into elevated tTG-IGA antibodies.

In your celaic diagnostic bloodwork, were any DGP and IGG antibodies run? https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Tara V]

1 minute ago, trents said:

One option to consider is to commit to eating gluten free for say, 6 months and then have your tTG-IGA rechecked. If it is within normal range that would suggests you are indeed having a light reaction to gluten.

We know there are certain medical conditions besides celiac (e.g. Crohn's and some parasitic infections), some foods (e.g., the dairy protein, casein) and some medications (e.g., NSAIDS and a certain blood pressure med) that can cause villi blunting but I hesitate to say that this would translate necessarily into elevated tTG-IGA antibodies.

In your celaic diagnostic bloodwork, were any DGP and IGG antibodies run? https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

I would agree with you except my levels of TTG go to normal about every other time I have them checked every few months. All other antibodies DGP and IGG have been negative. So confusing. And that’s the thing there is no villi blunting at all. Only mild IEL’s. I definitely could go gluten free for 6 months but I don’t know if that would give me any answers since I don’t feel sick, there’s nothing to compare it to. 

[trents]

"A raised IEL count with normal villous architecture is not uncommon. Six of the 14 patients may have had latent coeliac disease. The cause in at least half of cases is not obvious at present. The finding of a raised IEL count with normal villous architecture is of sufficient clinical importance to be highlighted in routine duodenal biopsy reports." https://jcp.bmj.com/content/55/6/424

Microscopic colitis? https://link.springer.com/article/10.1007/s10620-012-2315-0

I just get the feeling you are on the cusp of developing celiac disease. Many celaics are "silent". That is, they have no significant symptoms until the disease is in advanced stages. By then irreversible damage may have been done to body systems. I was a silent celiac.