Endoscopy/biopsy was today...still confused on what potential results might mean

[kg51]

I had my endoscopy and biopsy today and am getting ahead of myself with potential outcomes. Either...

1) the biopsy will be positive and I will officially be diagnosed with celiac, or

2) the biopsy will be negative, which could mean there’s no damage (yet?) or it’s patchy and was missed or my blood work was falsely positive.

Right?

History: positive tTG (19.8 with a <15 range), but negative everything else (EMA and DGP), and normal immunoglobulin A. I've had a lifetime of on and off symptoms—more off than on. Currently experiencing intermittent nausea, bloating, and stomach pain.

The GI is recommending eating gluten-free no matter what, but he kept mentioning “non celiac gluten sensitivity” which I feel wouldn’t be applicable with an elevated tTG value?

With no indications of other health issues like diabetes or liver failure could the tTG have been falsely positive?

[cyclinglady]

 I think you just have to be patient!  (So hard to wait, I know!)

I think it prudent for your GI to suggest going gluten free.  If damaged areas were actually missed, the diet will help to solidly a diagnosis of either celiac disease.     If the diet fails, look to other things that might cause a TTG to be elevated.  You are correct that an elevated TTG can NOT be due to Non-Celiac Gluten Sensitivity.  

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Maybe a different autoimmune disorder.  But worry about that later.  Celiac disease is NOT ruled out yet!  

[kg51]

8 hours ago, cyclinglady said:

 You are correct that an elevated TTG can NOT be due to Non-Celiac Gluten Sensitivity. 

So from my understanding tTG cannot be falsely elevated for no reason, it'd be due to a different health issue (though odds are it's celiac)...?

[kg51]

I'm also wondering if it might be useful to try for an appointment with University of Chicago's Celiac Disease Center (www.cureceliacdisease.org) since I'm near and my GI kept throwing around "non celiac gluten sensitivity" which does not sound applicable for an elevated tTG which decreases my confidence in that doctor.

[cyclinglady]

Well, I think you can rule out NCGI as the direct cause of an elevated TTG as it  does not raise antibodies and causes no intestinal damage like celiac disease.   However, symptoms are triggered.  So, trying a gluten free diet can be very helpful.  It might not solve all your problems, but it can help.   The problem is that researchers do not understand exactly celiac disease works and even less about NCGS.   They are working hard to really understand it because they think if they unlock the code to celiac disease they can possibly cure other autoimmune disorders.  The GI system is still unknown.  Let’s face it, it is not a glamorous medical specialty.  

Remember, the small intestine is the size of a tennis court.  Your damage might not be in the easily reachable or normal areas that it is commonly found.  I know it is hard not knowing, but you should have results soon.  I assume your GI said that visually everything looked good?  That is what happened to me.  I had to wait for my results, like you.   So hard to wait.  

Go to work, take a walk, watch a movie, read a book, or clean your home.    Time will fly!  

[cyclinglady]

18 minutes ago, kg51 said:

I'm also wondering if it might be useful to try for an appointment with University of Chicago's Celiac Disease Center (www.cureceliacdisease.org) since I'm near and my GI kept throwing around "non celiac gluten sensitivity" which does not sound applicable for an elevated tTG which decreases my confidence in that doctor.

Sure, you can do that.  But give your doctor credit for trying.  (I have heard much worse on this forum).  Let’s say you do not have celiac disease at this time.  Maybe you have Crohn’s.  A gluten free diet or AIP diet (which includes being gluten free) can cause IBD (Crohn’s or UC) disorders to go into remission based on a new small study out of La Jolla in San Diego.  Isn’t the goal to feel good all the time?     Trying a diet over a biologic drug would be a great place to start.  Then talk about antibodies testing for other AI issues that might be the root cause of your current issues.

Diagnosing a patient is like an onion.  You have to unpeel one layer at a time.  Or think of your 5th grade science project.  You picked  a hypothesis and then worked through it. You did not change the variables throughout the experiment, because if you did your hypothesis might be invalid.   That is what your doctor is trying to work through.  

Wait for the results.  Make sure you have all your medical records in hand to share with the next doctor.  I am a big advocate for second opinions.  But if the pathologist’s reports shows villi damage, there is no doubt.  No need for a second opinion.  You have it....the pathologist!  

[kg51]

11 minutes ago, cyclinglady said:

Remember, the small intestine is the size of a tennis court.  Your damage might not be in the easily reachable or normal areas that it is commonly found.  I know it is hard not knowing, but you should have results soon.  I assume your GI said that visually everything looked good?  That is what happened to me.  I had to wait for my results, like you.   So hard to wait. 

That's what I'm keeping in mind, and why I'm assuming no damage will be found...especially given my "low positive" tTG value. If my blood work was positive across the board or even if my tTG were high I don't think I'd be as skeptical about finding damage in the biopsy. So with a "low positive" tTG I think I'm just second guessing everything and wondering if this could all be a false positive of sorts? I can't seem to find a clear answer on that.

Yes, he said visually everything looked good in there, but obviously villi damage is microscopic so I anxiously await the biopsy results.

[kg51]

Just now, cyclinglady said:

Sure, you can do that.  But give your doctor credit for trying.  (I have heard much worse on this forum).  Let’s say you do not have celiac disease at this time.  Maybe you have Crohn’s.  A gluten free diet or AIP diet (which includes being gluten free) can cause IBD (Crohn’s or UC) disorders to go into remission based on a new small study out of La Jolla in San Diego.  Isn’t the goal to feel good all the time?     Trying a diet over a biologic drug would be a great place to start.  Then talk about antibodies testing for other AI issues that might be the root cause of your current issues.

Diagnosing a patient is like an onion.  You have to unpeel one layer at a time.  Or think of your 5th grade science project.  You picked  a hypothesis and then worked through it. You did not change the variables throughout the experiment, because if you did your hypothesis might be invalid.   That is what your doctor is trying to work through.  

Wait for the results.  Make sure you have all your medical records in hand to share with the next doctor.  I am a big advocate for second opinions.  But if the pathologist’s reports shows villi damage, there is no doubt.  No need for a second opinion.  You have it....the pathologist!  

Haha, I'm trying to be patient, I promise  I do like going over all possible outcomes so I feel like I have a better understanding of things.

My symptoms don't seem indicative of other issues (intermittent nausea, bloating, stomach pain...no diarrhea or constipation). And my blood work was clear from other signs of inflammation. But you're very right. I need to see what the biopsy results say and go from there.