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Negative Biopsy - scared!

Missingbeer

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Missingbeer Rookie
Missingbeer
Posted

Hello all 

this morning I finally got a call back from my doctors office after having an endoscopy a couple of months ago. My endoscopy showed flattened villi, so I started on the gluten free diet. I've been feeling a bit better, bowel movements not so loose and frequent, acid reflux gone, more energy and months of horrible brain fog cleared! 

I was sure the doctor was ringing to confirm diagnosis, but instead the call was from reception ensuring me my results are all clear. 

Ive never had the blood tests done, and don't know of any history of celiac in my family.

my question is, what else can cause flat villi? I'm worried and do not want to just dismiss these findings. Is it possible this could still be celiac?

 

thanks in advance!! :) 

 

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kareng Grand Master
kareng
Posted
2 hours ago, Missingbeer said:

Hello all 

this morning I finally got a call back from my doctors office after having an endoscopy a couple of months ago. My endoscopy showed flattened villi, so I started on the gluten free diet. I've been feeling a bit better, bowel movements not so loose and frequent, acid reflux gone, more energy and months of horrible brain fog cleared! 

I was sure the doctor was ringing to confirm diagnosis, but instead the call was from reception ensuring me my results are all clear. 

Ive never had the blood tests done, and don't know of any history of celiac in my family.

my question is, what else can cause flat villi? I'm worried and do not want to just dismiss these findings. Is it possible this could still be celiac?

 

thanks in advance!! :) 

 

Wow! I would ask for a copy of the results because I don't think a receptionist interpreting them is appropriate or accurate. Maybe call back and insist that a doctor call you back?

 

What were your blood test results?  did they do any?  There are other things that can cause the flattened villa if you don't have a positive blood panel.  These are questions for the doctor.

Missingbeer Rookie
Missingbeer
Posted
  • Author
1 hour ago, kareng said:

Wow! I would ask for a copy of the results because I don't think a receptionist interpreting them is appropriate or accurate. Maybe call back and insist that a doctor call you back?

 

What were your blood test results?  did they do any?  There are other things that can cause the flattened villa if you don't have a positive blood panel.  These are questions for the doctor.

Thanks for your reply! The receptionist ensured me that the doctor has looked at my results and gave the all clear. I never had the blood tests done as I never suspected celiac disease until the flat villi were found, I was sure I was going to get a diagnosis from the biopsy. 

I'm just worried at what else could be causing it, I can't seem to find much info on it.

Should the big difference in how I feel off gluten be enough to kind of self diagnose? 

Just not really sure where to go from here! I'm really just wondering if the biopsy results can be wrong, and can I still have celiac? 

 

kareng Grand Master
kareng
Posted
1 minute ago, Missingbeer said:

Thanks for your reply! The receptionist ensured me that the doctor has looked at my results and gave the all clear. I never had the blood tests done as I never suspected celiac disease until the flat villi were found, I was sure I was going to get a diagnosis from the biopsy. 

I'm just worried at what else could be causing it, I can't seem to find much info on it.

Should the big difference in how I feel off gluten be enough to kind of self diagnose? 

Just not really sure where to go from here! I'm really just wondering if the biopsy results can be wrong, and can I still have celiac? 

 

You need to ask a doctor these questions.  Yes, there are other causes.  It would be good to have the positive blood test so you know it is Celiac and don't miss something else.  How severe was the blunting?  What other things did they look for or find?  

kareng Grand Master
kareng
Posted

 

Open Original Shared Link

 

i think you may need a new doctor.  It is extremely unprofessional to have a receptionist call and give diagnosis and medical advice - probably illegal and malpractice worthy, too.  But you need to keep eating gluten until you get this sorted out.  Your regular doctor or an OB/ GYN ( if you have one) can also, order the blood work.  

 

Missingbeer Rookie
Missingbeer
Posted
  • Author
Just now, kareng said:

You need to ask a doctor these questions.  Yes, there are other causes.  It would be good to have the positive blood test so you know it is Celiac and don't miss something else.  How severe was the blunting?  What other things did they look for or find?  

I will most definitely be making an appointment to see my doctor this week. I'm just a bit thrown by today's results.

I had a colonoscopy and endoscopy and the findings were as follows: 

- flatenned villi (not sure to what extent)

- esophagitis

- gastritis

- hiatus hernia

I also had severe acid reflux for which I was given PPI's. They didn't work, eventually I stopped taking them and gave up gluten, and have not had any acid since.

thank you for your help! :) 

kareng Grand Master
kareng
Posted
13 minutes ago, Missingbeer said:

I will most definitely be making an appointment to see my doctor this week. I'm just a bit thrown by today's results.

I had a colonoscopy and endoscopy and the findings were as follows: 

- flatenned villi (not sure to what extent)

- esophagitis

- gastritis

- hiatus hernia

I also had severe acid reflux for which I was given PPI's. They didn't work, eventually I stopped taking them and gave up gluten, and have not had any acid since.

thank you for your help! :) 

If you have given up gluten, then you can't get a blood test.  Would be nice to know what caused all those "Itises".

 

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Missingbeer Rookie
Missingbeer
Posted
  • Author
15 minutes ago, kareng said:

If you have given up gluten, then you can't get a blood test.  Would be nice to know what caused all those "Itises".

 

Thank you.

Currently waiting on a call back from my doctor. I'm going to request a blood test, taking into account that this will require me to get back on gluten for the next few weeks....bit of a scary thought after 2 months of changing my lifestyle and feeling great! 

Missingbeer Rookie
Missingbeer
Posted
  • Author

UPDATE 

My doctor has just called and confirmed that a negative biopsy is the gold standard, so I do not have celiac disease. He still recommended that I go back on gluten for a month and get the blood tests, so I'll do it just to be sure. 

He mentioned it could be non celiac gluten sensitivity - but would this cause flat villi?

squirmingitch Veteran
squirmingitch
Posted

No, non celiac gluten sensitivity does NOT cause flattened villi.

You need to be on gluten for 3 months for the blood tests:

Open Original Shared Link

Make sure the doc does the FULL serum panel for celiac disease. This is it. Print it out & take it with you to the doc & stand on his shoulders if you have to in order to make sure he orders ALL the tests because this guy doesn't sound like he's "on the ball".

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

Gemini Experienced
Gemini
Posted

I agree with Squirmy on this.  I personally think you need a new, better doctor because you don't have one right now.  He is ruling out Celiac when you have flattened villi but he never did the blood work to back up the diagnosis? That is just plain dumb.  He found flattened villi on the test that is supposedly the "Gold Standard" and then dismisses Celiac Disease.  Do you see how silly that is?

If your acid reflux comes back when you do the gluten challenge for the blood work, that is an added "Ah Ha"! moment.....good luck with the challenge and the testing. I think it important that you do this. Celiac Disease is still a real possibility for you.  Not to mention that many people test negative on the blood work and positive on the biopsy. Sometimes this is not an easy disease to figure out.......

Missingbeer Rookie
Missingbeer
Posted
  • Author

Thanks everyone! 

I should point out that the doctor who did the endoscopy and left the call up to the receptionist is not my own doctor, but my results were sent to him from the lab so he's the one who interpreted them ! My own doctor is the one who called me back today , I explained the situation to him and he is a little more on the ball. I still wonder though if he's correct in saying a negative biopsy completely rules out celiac ?

The acid reflux will be a big thing as it went from severe and unbearable, to non existent! 

Thanks for all your help, it's hard when you think you've got an answer after so long only to find it may not be the case.

 

squirmingitch Veteran
squirmingitch
Posted

OK, so the doc who did the endoscopy is the jerk. He didn't even interpret the results? Just sent it to your doc who had to interpret them? This makes me question how many biopsies he actually did & from what sections of the intestine. I think you should get your records. There should be 4-6 biopsies. I forget exactly which sections they should come from but I'm sure someone else here can tell you.

7 hours ago, Missingbeer said:

so I started on the gluten free diet. I've been feeling a bit better, bowel movements not so loose and frequent, acid reflux gone, more energy and months of horrible brain fog cleared! 

That statement is so telling!!! 

Gemini Experienced
Gemini
Posted
1 hour ago, Missingbeer said:

I still wonder though if he's correct in saying a negative biopsy completely rules out celiac ?

No, it does not. Damage can be very patchy with Celiac and, considering your small intestine has the surface area of a tennis court, it can be very easy to miss unless your small intestine is very compromised.  When some of the testing comes out negative and you have severe symptoms of a gastro problem that could be Celiac, it is very important to do all of the testing available.  Antibody blood work, biopsy and genetic testing.  If that fails to give you decisive information, then a dietary trial is next. Yo already know your acid reflux disappeared when eating gluten free so keep on testing!

Missingbeer Rookie
Missingbeer
Posted
  • Author

The doctor who did the endoscopy is the one who interpreted the results and told the receptionist to call me with the all clear, my own doctor hasn't even seen the results but I've ordered that a copy be sent to him. 

Im really starting to understand all the stuff I read about doctors being uneducated about celiac. I really like my doctor, I think he simply doesn't know enough about the disease which is a shame. 

I just really didn't know what to take from the negative biopsy, I really appreciate all your help and I think it's safe to say I definitely shouldn't be ruling out celiac at this point!

Missingbeer Rookie
Missingbeer
Posted
  • Author
On 18 July 2016 at 5:39 PM, Missingbeer said:

Thanks everyone! 

I should point out that the doctor who did the endoscopy and left the call up to the receptionist is not my own doctor, but my results were sent to him from the lab so he's the one who interpreted them ! My own doctor is the one who called me back today , I explained the situation to him and he is a little more on the ball. I still wonder though if he's correct in saying a negative biopsy completely rules out celiac ?

The acid reflux will be a big thing as it went from severe and unbearable, to non existent! 

Thanks for all your help, it's hard when you think you've got an answer after so long only to find it may not be the case.

 

A few days back on gluten, acid reflux has come back with a vengeance!

Palvyre Apprentice
Palvyre
Posted

I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 

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