Understanding Daughter's Endoscopy Biopsy Results

[Lissasmmarie]

Hello all -

I have a 5yr old daughter that was diagnosed as Type 1 diabetic at the age of three.  It is standard procedure to run blood tests for celiac for type 1's as they run a high risk of having the disease as well.  Her results were not "positive" across the board for celiac - so an endoscopy was recommended.  CVD 19 then hit and we were unable to get her in for the endoscopy until just this year!  Daughter had zero symptoms over the last two years until the last 2 months with complaints of heartburn..  I can provide her blood tests, but they aren't exactly where we are confused - I am trying to understand her Endoscopy biopsy results (we meet with her GI doc next week).  I thought that the small intestine mucosa was where celiac caused damage, but is it possible for it to damage just the gastric tissue and the small intestine to be fine?

Visually during the endoscopy the doctor indicated no signs of damage - everything is pink and happy - but we knew the microscopic results were needed.  The only results provided the "flag" indicated:

Stomach Biopsy:
Chronic gastritis - Low Grade
Gastric mucosa has mild expansion of lamina propria by inflammatory infiltrate of lymphocytes and a scattering of plasma cells (which sounds celiac-y)  Neutrophils are not seen epithelial is unremarkable and basement membrane is normal.

All other results:
Duodenum - neg for changes of sprue no diagnostic abnormalities
Stomach - neg for dysplasia, neoplasia, or helicobacter
Distal Esophagus - neg for glandular mucosa, dysplasia, neoplasia, or goblet cell.  
Proximal Esophagus - Squamous mucosa with no diagnostic abnormality.  neg for glandular mucosa, dysplasia, neoplasia, or goblet cell.  
Small bowel mucosa - Shows villous structures with no widening, flattening, or shortening.  expansion of lamina propia by an inflammatory infiltrate is not seen.

Thoughts?  I am fine with putting her on a gluten free diet either way, just trying to understand if it is "normal" for the stomach to be "damaged" but the small intestine to be totally normal.

Thank you!

[Lissasmmarie]

And for reference - the blood test
TTG was High (result 132.7 - normal range is less than 20)
Gliadin (result 4 - normal range is 0-19)
IGA (result 131 - normal rang is 25-124)
 

[Scott Adams]

This such a high TTG test result celiac disease is very likely, even though the biopsy results don't clearly show celiac disease, at least from my non-doctor look at what you posted. Even with a negative biopsy I would still consider this to be likely celiac disease. You can read more about blood test results here, but in Europe they are diagnosing people who are 10x the TTG cut off marker for celiac disease, without even doing a biopsy. She is at 6.6x the cut off. Younger people have amazing healing abilities, so negative damage to the villi is common. Was she eating a lot of gluten daily for at least two weeks before the biopsy?

 

[trents]

Welcome to the forum, Lissasmmarie!

I take it the TTG was tTG-IGA and that would strongly suggest she has celiac disease. And that number is unequivocally high. Her total IGA is actually a little high. The importance of total IGA is that if it is low it will skew other IGA tests downward and can create a false negative. Not an issue in this instance.

Children have remarkable recuperative powers and the fact that there is no small bowel villi damage could be attributed to her body rebuilding the SB villous lining faster than it is being damaged. We often see this combination of positive celiac antibody test scores with normal SB mucosa from biopsy in children. Or, it could be that there just hasn't been enough time for the damage to happen, i.e., you caught the celiac disease at an early stage. After all, she has only lived 5 total years. It takes 10 plus years after onset of celiac disease for most of us to get a proper diagnosis.

The irregularities in the gastric mucosa suggests to me something isn't agreeing with her in her diet. I would look not only at gluten but dairy, oats and eggs as these are additional food intolerances that are common with celiacs.

Since she has completed all celiac testing, both antibodies and biopsy, I would trial a gluten free diet with a follow-up tTG-IGA in 6 months to see if the numbers are declining and if the heartburn improves.

[Lissasmmarie]

51 minutes ago, Scott Adams said:

This such a high TTG test result celiac disease is very likely, even though the biopsy results don't clearly show celiac disease, at least from my non-doctor look at what you posted. Even with a negative biopsy I would still consider this to be likely celiac disease. You can read more about blood test results here, but in Europe they are diagnosing people who are 10x the TTG cut off marker for celiac disease, without even doing a biopsy. She is at 6.6x the cut off. Younger people have amazing healing abilities, so negative damage to the villi is common. Was she eating a lot of gluten daily for at least two weeks before the biopsy?

 

Scott!  Thank you so much for your response!  I had read that finding as well and discussed with her endo at the time of her diabetes diagnosis that her TTG was significantly high - she is obviously not a GI doctor - but was perplexed by some of the other blood tests coming back normal.  I was somewhat surprised that the GI requested an endoscopy at all - given how elevated her TTG is.  We anticipated to see some clear "diagnosis" based on the scope/biopsy- but it feels like it is going back to the blood test which we already had.  And didn't know if anyone might have thoughts as to why her stomach is showing some "unusual" results, while her small intestine seems to be great.  Regardless, the "gut" feeling (hahah) was that she needed to be put on a gluten free diet. 

And yes, she was eating at least 2 slices of bread worth of gluten a day for a month before the procedure.  Her GI suggested we do it for a month given kiddos heal so quickly.

[Lissasmmarie]

49 minutes ago, trents said:

Welcome to the forum, Lissasmmarie!

I take it the TTG was tTG-IGA and that would strongly suggest she has celiac disease. And that number is unequivocally high. Her total IGA is actually a little high. The importance of total IGA is that if it is low it will skew other IGA tests downward and can create a false negative. Not an issue in this instance.

Children have remarkable recuperative powers and the fact that there is no small bowel villi damage could be attributed to her body rebuilding the SB villous lining faster than it is being damaged. We often see this combination of positive celiac antibody test scores with normal SB mucosa from biopsy in children. Or, it could be that there just hasn't been enough time for the damage to happen, i.e., you caught the celiac disease at an early stage. After all, she has only lived 5 total years. It takes 10 plus years after onset of celiac disease for most of us to get a proper diagnosis.

The irregularities in the gastric mucosa suggests to me something isn't agreeing with her in her diet. I would look not only at gluten but dairy, oats and eggs as these are additional food intolerances that are common with celiacs.

Since she has completed all celiac testing, both antibodies and biopsy, I would trial a gluten free diet with a follow-up tTG-IGA in 6 months to see if the numbers are declining and if the heartburn improves.

Hi Trents!  Thank you for the quick response!  We had discussed her high TTg-IGA with her endo (and then GI) doc and they ultimately said, it's likely she had celiac, but needed to confirm via the endoscopy.  When I saw the results, I was surprised that it didn't actually confirm it haha.  Just that we need to rely on the blood test, which again, is totally fine...just was a bit perplexed by the whole thing (while I recognize the endoscopy rules out things like hpylori or cancer related issues)  However, I was particularly surprised to see Gastric mucosa vs SB mucosa irregularities- because there was never any discussion that it would be the stomach mucosa that would be damaged from celiac.  I never thought to consider that she might be having a reaction to another substance on top of gluten!  

We will definitely start her off by removing gluten and see if we can identify if she has an allergy/intolerance to other things in her diet.

Thank you so much, this was incredibly helpful!!

[Lissasmmarie]

1 hour ago, trents said:

Welcome to the forum, Lissasmmarie!

I take it the TTG was tTG-IGA and that would strongly suggest she has celiac disease. And that number is unequivocally high. Her total IGA is actually a little high. The importance of total IGA is that if it is low it will skew other IGA tests downward and can create a false negative. Not an issue in this instance.

Children have remarkable recuperative powers and the fact that there is no small bowel villi damage could be attributed to her body rebuilding the SB villous lining faster than it is being damaged. We often see this combination of positive celiac antibody test scores with normal SB mucosa from biopsy in children. Or, it could be that there just hasn't been enough time for the damage to happen, i.e., you caught the celiac disease at an early stage. After all, she has only lived 5 total years. It takes 10 plus years after onset of celiac disease for most of us to get a proper diagnosis.

The irregularities in the gastric mucosa suggests to me something isn't agreeing with her in her diet. I would look not only at gluten but dairy, oats and eggs as these are additional food intolerances that are common with celiacs.

Since she has completed all celiac testing, both antibodies and biopsy, I would trial a gluten free diet with a follow-up tTG-IGA in 6 months to see if the numbers are declining and if the heartburn improves.

Ahhh - I actually am reviewing this again as her latest test came back and her tissue transglutaminase IGA value came back negative (her result was 4.4 and the standard result is <7).  So I am utterly confused as to what is happenniiinnngg!!!!

[trents]

25 minutes ago, Lissasmmarie said:

Ahhh - I actually am reviewing this again as her latest test came back and her tissue transglutaminase IGA value came back negative (her result was 4.4 and the standard result is <7).  So I am utterly confused as to what is happenniiinnngg!!!!

Not surprised. A child's immune system is undergoing rapid development and hers is immature at this point. As it develops, there will be changes in how it interprets things in her diet and environment as to whether they are safe or pose a threat. That is why physicians are often hesitant to declare that a child has celiac disease based on an isolated out of spec test result. But the heartburn is concerning . . . and the type 1 diabetes since it is an autoimmune-caused medical disorder .  .  . as is celiac disease. Autoimmune disorders tend to cluster.

Concerning the heartburn, I would look into food sensitivity testing of the ALCAT variety:

Now, food sensitivity/allergy testing can turn up so many positives that it can be overwhelming. It is also known to generate more than a few false positives and it should always be compared to real life symptoms. But it can also provide a place to start when looking for offenders. Pay special attention to the strongest offenders as these tests rate the strength of reaction to different foods. Keeping a food diary can also be very helpful to spot patterns, keeping in mind that there can be a delay of 24 hr. or more between consumption and reaction.

I think the important things are 1. Be systematic in your exploration of possible causes and 2. keep an eye on things. As her immune system is under rapid development, a positive tTG-IGA at one point in time, even though, it has returned to normal, could indicate celiac disease down the road.

[Scott Adams]

You may want to do a genetic test on her to see if she carries a celiac marker, according to research, the overall prevalence of celiac disease in individuals with type 1 diabetes in the USA ranges from approximately 4% to 9%. She already has a much higher likelihood of having celiac disease than the normal population.

[Lissasmmarie]

23 hours ago, trents said:

Not surprised. A child's immune system is undergoing rapid development and hers is immature at this point. As it develops, there will be changes in how it interprets things in her diet and environment as to whether they are safe or pose a threat. That is why physicians are often hesitant to declare that a child has celiac disease based on an isolated out of spec test result. But the heartburn is concerning . . . and the type 1 diabetes since it is an autoimmune-caused medical disorder .  .  . as is celiac disease. Autoimmune disorders tend to cluster.

Concerning the heartburn, I would look into food sensitivity testing of the ALCAT variety:

Now, food sensitivity/allergy testing can turn up so many positives that it can be overwhelming. It is also known to generate more than a few false positives and it should always be compared to real life symptoms. But it can also provide a place to start when looking for offenders. Pay special attention to the strongest offenders as these tests rate the strength of reaction to different foods. Keeping a food diary can also be very helpful to spot patterns, keeping in mind that there can be a delay of 24 hr. or more between consumption and reaction.

I think the important things are 1. Be systematic in your exploration of possible causes and 2. keep an eye on things. As her immune system is under rapid development, a positive tTG-IGA at one point in time, even though, it has returned to normal, could indicate celiac disease down the road.

Thank you for sharing this - Her GI office actually called me yesterday to meet earlier as all the results were back and he seemed a bit perplexed.  His initial thought when recommending the endoscopy was that she would absolutely have Celiac.  Also - for reference, she has had multiple elevated TTG-IGAs in the past... 2 of the 5 have been elevated, 2 were high normals, and then this last one being completely "normal".  He confirmed that the biopsy showed no damage to her SB which is where the damage would occur and that he did a total of 12 biopsies because he was certain celiac damage would be somewhere.  He has assured me that if she truly was celiac at this point, that microscopically after 3 years of eating gluten (original elevated TTG was from nearly 3 years ago) there would be some indication...but still no answers as to what caused the elevated TTG sporadically throughout the last 3 years.  Feeling more confused than ever at this point - BUT your comment definitely would add color to the mystery....her body is still learning what is safe and isn't....she is also autoimmune, so I am certain that it has caused additional confusion internally lol.  

They want to retest her TTG throughout the next year, with her eating gluten....to see if we can get a more stable baseline.  Obviously if she starts to have more severe symptoms - we will rescope.  But for now, it is just a lot of questions marks for us...

  And we are going to start testing for other food allergies/sensitivities to combat the gastritis. 

[Lissasmmarie]

20 hours ago, Scott Adams said:

You may want to do a genetic test on her to see if she carries a celiac marker, according to research, the overall prevalence of celiac disease in individuals with type 1 diabetes in the USA ranges from approximately 4% to 9%. She already has a much higher likelihood of having celiac disease than the normal population.

Thanks for the comment Scott - Her endocrinologist shared that stat with us at the time of her T1D diagnosis which is what sparked the entire celiac testing process - she never had signs of celiac so we didn't have concerns.  It was just one of the many blood tests they do because of the relationship between the two autoimmune diseases.  I do not believe genetic testing has been done however (only the genetic markers for T1D)....it is the only test I cannot find in her records, so I will ask her GI about that.  The entire situation has been incredibly confusing as the elevated TTG levels happened on multiple occasions over the last 3 years...as have non elevated levels....and now there is also a biopsy (of over 12 samples) is negative.  Our GI was quite surprised (enough so that he called us and moved the appt up to last night) and is enlisting additional help to have a better understanding of T1D in pediatric patience and how that impacts their TTG levels in hopes we can get some clear idea as to what is going on.

If it is celiac that is ok, I don't want to change her diet and entire life again if we don't have to...but if we need to, I would never push back on that decision.  Just seems like the more tests we do, more often, the less clear this becomes for everyone.

[trents]

I think that your doctors are showing wisdom and seem to be on top of things. You should be thankful for that because this is not always the case when it come to celiac disease diagnosis. Regular monitoring of the tTG-IGA is important in this case. One thing that might come into play here is that many of the carbs the average first world person consumes come from wheat and bread products. I'm sure with your daughter's T1D you are watching carb calories so this might also limit the amount of gluten she is getting compared to most children. In turn, that could have a bearing on her antibody levels.

[Lissasmmarie]

7 minutes ago, trents said:

I think that your doctors are showing wisdom and seem to be on top of things. You should be thankful for that because this is not always the case when it come to celiac disease diagnosis. Regular monitoring of the tTG-IGA is important in this case. One thing that might come into play here is that many of the carbs the average first world person consumes come from wheat and bread products. I'm sure with your daughter's T1D you are watching carb calories so this might also limit the amount of gluten she is getting compared to most children. In turn, that could have a bearing on her antibody levels.

Yes...we are very fortunate to have 2 great specialist, as I have heard others not have this level of care for either disease which is heartbreaking.

And thank you for your responses- you have given me insight to things we hadnt considered and offered new topics/questions for me to discuss with our care team.  You are amazing to everyone in this forum and it is incredible.  So very appreciative of the time and knowledge you share with us!

[trents]

Thank you for your encouragement. One of the gifts of this forum is the knowledge and experience the community brings to bear on those just entering what seems like a new health crisis. It helps by allowing them the room to put it all in a better perspective so that they can deal with it one step at a time rather than being overwhelmed by taking on the whole threat in one big piece.

[Wheatwacked]

There is a simple way to tell if gluten is the problem. Have her eat gluten free for a few weeks and retest.  A negative test will indicate that it is indeed the gluten.  You already have results while on gluten and there is the fact she will feel better. Why do they need more?. 

The most common link between Celiac and other autoimmune diseases like T1D is low vitamin D.  

Vitamin D shows promise for children newly diagnosed with type 1 diabetes  

Possible Role of Vitamin D in Celiac Disease Onset