Help with understanding endoscopy (Marsh 1) and negative blood test

[KMS0220]

Hello!   

Me: 47 y/o female.  No GI issues.  Anxiety,  brain fog,  thinning hair, headaches, light headed at times.  Diet consists of a ton of carby crap...not much meat or veggies or fruits. 

Had bloodwork taken to hone in the supplements I was taking. 

• My Iron saturation came back at 10%.  
• My CRP-hs came back at 10 (range 0-10).  I had worked out just before, had a small nose injury so thought perhaps the inflammatory markers were elevated due to that. 
• All other markers normal. 
• My Primary ordered a colonoscopy and endoscopy to rule out any internal bleeding that could contribute to the iron saturation issue.   

Call from GI doc with results:  Dr called with endoscopy results and said something like "I'm a little surprised at this, but you might have celiac sprue or the beginning of it so I'd like to do some bloodwork. Could be from taking meds, I don't know.  Let's just see what the blood test says, it could come back negative".  I was like, wait, huh?  Felt confused.  Anyway, had the blood taken and he called and said "you're negative for celiac.  do another blood test in a year."  

Thought I'd run the tests by you since the phone call was 30 seconds long and I felt really rushed and couldn't really get my questions together. 

Endoscopy result letter:

• Normal esophagus,  Normal stomach, small bowel lymphocytes (Marsh 1).
• The tissue removed from your esophagus was normal showing no signs of infection or cancer. 
• The tissue removed from your stomach is normal showing no signs of infection of cancer. 
• Biopsies from the early part of your small intestine show a mild degree of inflammation with a special type of inflammatory cell known as lymphocytes.  This can be due to a number of causes.  This is generally a benign finding but needs further evaluation or testing understand the cause.  

Blood test result letter: 

• Immunoglobulin A, Qn Serum.  Result: 329 mg/dl (scale 87-352).  
• t-Transglutaminase (tTG) IgA.  Result: <2 u/ml (scale 0-3)

Question for group: Should I just go about life as I was?  Should I get a celiac gene test?  I don't want to figure something out when I'm a Marsh 3, on the other hand perhaps this is just a sensitivity and I am over thinking.  I don't think inflammation is "normal" so wouldn't' mine figuring it out.  

TIA!

 

[trents]

28 minutes ago, KMS0220 said:

Hello!   

Me: 47 y/o female.  No GI issues.  Anxiety,  brain fog,  thinning hair, headaches, light headed at times.  Diet consists of a ton of carby crap...not much meat or veggies or fruits. 

Had bloodwork taken to hone in the supplements I was taking. 

• My Iron saturation came back at 10%.  
• My CRP-hs came back at 10 (range 0-10).  I had worked out just before, had a small nose injury so thought perhaps the inflammatory markers were elevated due to that. 
• All other markers normal. 
• My Primary ordered a colonoscopy and endoscopy to rule out any internal bleeding that could contribute to the iron saturation issue.   

Call from GI doc with results:  Dr called with endoscopy results and said something like "I'm a little surprised at this, but you might have celiac sprue or the beginning of it so I'd like to do some bloodwork. Could be from taking meds, I don't know.  Let's just see what the blood test says, it could come back negative".  I was like, wait, huh?  Felt confused.  Anyway, had the blood taken and he called and said "you're negative for celiac.  do another blood test in a year."  

Thought I'd run the tests by you since the phone call was 30 seconds long and I felt really rushed and couldn't really get my questions together. 

Endoscopy result letter:

• Normal esophagus,  Normal stomach, small bowel lymphocytes (Marsh 1).
• The tissue removed from your esophagus was normal showing no signs of infection or cancer. 
• The tissue removed from your stomach is normal showing no signs of infection of cancer. 
• Biopsies from the early part of your small intestine show a mild degree of inflammation with a special type of inflammatory cell known as lymphocytes.  This can be due to a number of causes.  This is generally a benign finding but needs further evaluation or testing understand the cause.  

Blood test result letter: 

• Immunoglobulin A, Qn Serum.  Result: 329 mg/dl (scale 87-352).  
• t-Transglutaminase (tTG) IgA.  Result: <2 u/ml (scale 0-3)

Question for group: Should I just go about life as I was?  Should I get a celiac gene test?  I don't want to figure something out when I'm a Marsh 3, on the other hand perhaps this is just a sensitivity and I am over thinking.  I don't think inflammation is "normal" so wouldn't' mine figuring it out.  

TIA!

 

Welcome to the forum, KMS0220!

Between you and your doctor, you seem to be aware of the assortment of things that can cause lymphocytic inflammation in the small bowel. It does not appear that at this time you have celiac disease but you certainly could have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms. Some experts feel that NCGS can be a precursor to celiac disease. If money is not an issue, yes, I would get gene testing done. Gene testing cannot establish the presence of celiac disease but it can establish the potential for it. So, if you don't have any of the genes that have been pegged (so far) as providing the potential for celiac disease, then you probably can rule it out and look at NCGS. The one caveat is that the gene profile associated with celiac disease is in flux. For some years it was only DQ2 and DQ8 but another one or two genes have recently been tied to the potential to develop celiac disease. So, even this is not set in concrete.

The other thing is concerns me is that your doc only ran two celiac antibody tests, total serum IGA and tTG-IGA. tTG-IGA is considered to be the one test that combines good sensitivity with good specificity with good economy. There are a number of other celiac diagnostic tests that could have been run and sometimes that is very valuable as one test may catch what another has missed. Some people's immune systems just respond atypically to certain tests do coming at it from different angles can be helpful. So, you might ask for a "full" celiac panel to be run. Here is a primer:

Don't begin a gluten free diet until all testing is complete.

[KMS0220]

2 hours ago, trents said:

Welcome to the forum, KMS0220!

Between you and your doctor, you seem to be aware of the assortment of things that can cause lymphocytic inflammation in the small bowel. It does not appear that at this time you have celiac disease but you certainly could have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms. Some experts feel that NCGS can be a precursor to celiac disease. If money is not an issue, yes, I would get gene testing done. Gene testing cannot establish the presence of celiac disease but it can establish the potential for it. So, if you don't have any of the genes that have been pegged (so far) as providing the potential for celiac disease, then you probably can rule it out and look at NCGS. The one caveat is that the gene profile associated with celiac disease is in flux. For some years it was only DQ2 and DQ8 but another one or two genes have recently been tied to the potential to develop celiac disease. So, even this is not set in concrete.

The other thing is concerns me is that your doc only ran two celiac antibody tests, total serum IGA and tTG-IGA. tTG-IGA is considered to be the one test that combines good sensitivity with good specificity with good economy. There are a number of other celiac diagnostic tests that could have been run and sometimes that is very valuable as one test may catch what another has missed. Some people's immune systems just respond atypically to certain tests do coming at it from different angles can be helpful. So, you might ask for a "full" celiac panel to be run. Here is a primer:

Don't begin a gluten free diet until all testing is complete.

Trents……thank you so much for taking the time to respond with so much thought and detail. I really appreciate it!

I’m going to go ahead and do the genetic test and depending on the outcome will get a full panel done. 

does it matter which company I use?  I found two and I’m sorry but I’m confused because  they look like different gene names?  Or maybe misreading? 

https://www.genovate.com/product/celiac-disease-dna-test/

or 

https://rxhometest.com/product/celiac-genetic-test
 

thanks again so much. Means a lot 

[trents]

The company that I hear most often about n this connection is 23andMe: https://www.23andme.com/dna-health-ancestry/

Maybe some of our other members have some recommendations in this matter or personal experience with genetic testing for celiac disease.

The verbage used in the test results can indeed be confusing. I'm no expert on this, believe me. I think one of the confusing things is that some of them talk about variants of the main genes in question. This might help: https://www.verywellhealth.com/hla-dq2-the-primary-celiac-disease-gene-562569

If you get the testing done, post your results and some of our knowledgeable on this subject members well help with the interpretation. To develop "active" celiac disease requires not only the genetic potential but also some kind of triggering biological stress event (such as a viral infection). About 40% of the population have the genetic potential but only about 1% or so have active celiac disease which can be triggered at any stage of life.

 

[trents]

If you physician balks at running more celiac blood antibody tests, you can purchase a home kit from companies like Imaware that will give well, not a complete panel, but a more complete one than you have had done. I think it costs around $100 US.

[KMS0220]

14 hours ago, trents said:

If you physician balks at running more celiac blood antibody tests, you can purchase a home kit from companies like Imaware that will give well, not a complete panel, but a more complete one than you have had done. I think it costs around $100 US.

Thank you again for all of this. I’ll get the genetic test ordered right away. I started reading the article and am so confused haha. I’ll keep you posted and thank you again!!!! 

[Holycow]

Marsh 1 and a negative blood test is not active celiac disease at this time.  This is called potential or latent celiac disease.  Most of the time, potential or latent celiac disease does not develop into celiac disease, ever, even with genetic markers for celiac.  A complete celiac panel and genetic screening will not change the fact, that right now, you don’t have active celiac disease.

Eliminating gluten from your diet at this time is overkill.  Also, implementing a gluten free diet now, would invalidate any future testing for celiac disease without a 6 to 8 week long gluten challenge.

At the same time, this is something that should be monitored over time.  If you start to get symptoms or things change, another screening blood test complete with genetic markers should happen.  That may or may not indicate the need for an additional biopsy, but at least it would be a more straightforward process.