Info needed- doctor spent 30 seconds with me

[Joshharris76]

Hi everyone, I recently had some blood work come back borderline so they went ahead and did an endoscope with biopsies a couple of days ago. Afterwards the surgeon woke me up and said my villi had some blunting and that with my blood work would mean coeliac is pretty likely- she was with me for 30 seconds and left. I don’t see my normal specialist for ten days and I’m bit concerned- does this definitely mean I have coeliac disease? Does it have to be a positive blood test and full villi atrophy to be classed as coeliac? 
 

thanks so much for any info or experiences people can share 

[trents]

1 hour ago, Joshharris76 said:

Hi everyone, I recently had some blood work come back borderline so they went ahead and did an endoscope with biopsies a couple of days ago. Afterwards the surgeon woke me up and said my villi had some blunting and that with my blood work would mean coeliac is pretty likely- she was with me for 30 seconds and left. I don’t see my normal specialist for ten days and I’m bit concerned- does this definitely mean I have coeliac disease? Does it have to be a positive blood test and full villi atrophy to be classed as coeliac? 
 

thanks so much for any info or experiences people can share 

No. In fact, there are plenty of people who actually have negative bloodwork but confirmed as celiacs by biopsy. If your total IGA is low then the blood test may not be positive or show a weak positive. Also, many people make the mistake of trying to cut out gluten in their diet before testing and that can invalidate the tests, either the blood antibody tests or the biopsy. 

[cristiana]

Hi Josh 

I think quite few of us can relate to that happening - it's SO frustrating being told something, only for the doctor/consultant to be called off somewhere and one is left with a head full of unanswered questions!

Trents is absolutely right - not everyone has positive blood tests.  

I am glad you have a follow-up in ten days' time.   Do you have any symptoms that you think you can attribute to coeliac disease?   

Cristiana

 

[Scott Adams]

13 hours ago, Joshharris76 said:

Hi everyone, I recently had some blood work come back borderline so they went ahead and did an endoscope with biopsies a couple of days ago. Afterwards the surgeon woke me up and said my villi had some blunting and that with my blood work would mean coeliac is pretty likely- she was with me for 30 seconds and left. I don’t see my normal specialist for ten days and I’m bit concerned- does this definitely mean I have coeliac disease? Does it have to be a positive blood test and full villi atrophy to be classed as coeliac? 
 

thanks so much for any info or experiences people can share 

Welcome to the forum! I love how gastroenterologists have these kinds of conversations with you while you’re still half under sedation. I recall a similar strange exchange, but only barely, after my last colonoscopy. My doctor mentioned something about “feeling some kind of bump, you might want to get a follow up sooner than the normal time period, but it may be nothing.” It was like a dream, and later when I recalled this and brought it up with my doctor there was no record of anything he said!

In any case, if you can get the blood test results and would like to share them, along with the scale used to determine positive results, it might give us more info about your situation, but @trents is right, celiac disease can be diagnosed via your biopsy results. I assume they will prescribe a gluten-free diet now, and this might be helpful:

 

[GodsGal]

The surgeon didn't even see me after surgery. He just told my mom that "everything looked fine." That statement created a lot of confusion. And, after I got the call telling me that my biopsy results were positive for celiac, I had to face quite a bit of, "Are you sure you have celiac? Is it possible that there was a mixup in the lab? The doctor said everything looked fine!" 😞

Thankfully he is not the GI nurse practitioner I see! 

So, unfortunately, I think that your experience is pretty common.

 

[trents]

If by "the doctor" you mean the one doing the endoscopy told your mom "everything looked good," that one is easy to explain. Depending on the extent of the damage, the experience of the one doing the scope, and the magnification quality of the scope itself, the damage may not be visible. That's why they send it to a lab for microscopic inspection.

[GodsGal]

1 hour ago, trents said:

If by "the doctor" you mean the one doing the endoscopy told your mom "everything looked good," that one is easy to explain. Depending on the extent of the damage, the experience of the one doing the scope, and the magnification quality of the scope itself, the damage may not be visible. That's why they send it to a lab for microscopic inspection.

Yeah, that is the only thing I can think of as well. I am guessing that the scope was not powerful enough. 

[Kate333]

I would wait for the biopsy results before guessing, worrying too much, or drawing any conclusion about a diagnosis.  The good news is if you do have some blunting, the strict gluten-free diet should help heal any damage, esp. quickly as younger folks seem to respond faster.   

A few years ago, I had an upper EGD and overheard the GI doc doing the scope casually say "It's Barrett's Esophagus" as I still lay on the table.  She said that BEFORE even getting the tissue biopsies back from the pathologist confirming a diagnosis.  She then told me to take PPIs but no follow-up from her, staff, etc. re: path report results.  I could not even get a response to my email Qs, calls.  And  no follow-up scope to assess response to medication.  I later heard through the grapevine that she had retired but her staff didn't even tell me or offer to assign another GI.   Well, her remark + the GI dept. silence in response to my requests only fed/increased my anxiety, leading to endless days doom-surfing the Internet, of course envisioning the worse BE outcome possible. 

Fast-forward a few years ago, I got a referral to a wonderful young new GI doc who scoped me, took biopsies, after PCP had noticed my TTG gluten blood test number was high.   The new GI doc responsibly waited for the path results before discussing my case with me (negative celiac disease biopsy result).  He wondered why I was still on PPIs, or concerned about BE.  I told him the previous doc's diagnosis.  30 min. after we spoke, he called me back to say he had reviewed my file in depth and assured me that I didn't have BE after all, apologized that the other doc was mistaken because both his (and the previous) path reports had clearly ruled BE out.   

I was so relieved but also upset that the first doc's premature comment had led me to waste literally YEARS needlessly worrying about a condition I didn't even have and taking PPI meds now linked to so many side-effects.    

 

  

[Scott Adams]

16 hours ago, trents said:

If by "the doctor" you mean the one doing the endoscopy told your mom "everything looked good," that one is easy to explain. Depending on the extent of the damage, the experience of the one doing the scope, and the magnification quality of the scope itself, the damage may not be visible. That's why they send it to a lab for microscopic inspection.

The only issue I have with this explanation is that if anyone should know better than to say that "everything looked good" before reviewing the samples taken under a microscope, it ought to be the GI doctor, right? I guess it's all relative, and perhaps to them if they didn't see something really bad like cancer, then everything looked fine. Personally I'd just tell patients that we saw nothing to worry about visually, but we've taken some biopsies and will have the final results of those shortly.

[cristiana]

7 minutes ago, Scott Adams said:

The only issue I have with this explanation is that if anyone should know better than to say that "everything looked good" before reviewing the samples taken under a microscope, it ought to be the GI doctor, right? I guess it's all relative, and perhaps to them if they didn't see something really bad like cancer, then everything looked fine. Personally I'd just tell patients that we saw nothing to worry about visually, but we've taken some biopsies and will have the final results of those shortly.

 

I seem to recall having had a similar thing happen to me - I am sure I read in my letter following endoscopy that everything looked normal but was told in the same letter the results from the samples would  not be known for a while.   I had very high tTG so coeliac was suspected, and of course when the samples came back they showed I had coeliac disease.   So I took it from the letter that they didn't see anything really bad, as you say, but I was a bit confused at the time!