No Scaling = No Celiac

[MChase]

I had my colonoscopy and an endoscopy today. The GI dr said my colon is fine. No ulcerative colitis, diverticulitis, or Crohns. He also said that there were no signs of scaling in my small intestine so Celiac is unlikely. He did take 7 biopsies (not sure from which end). He said not to go gluten free just yet.

So the diagnosis now is gastritis. He gave me a prescription for Prilosec 40mg. If I am going out and feel nervous about things, I could take Immodium. No follow up yet. They will calk with biopsy results and make a follow up at that time. Results can take anywhere between 2 days and 2 weeks. All this was relayed to me by my husband because I was still out of it from the anesthia.

I have not had a celiac blood panel yet. When I asked the GI about it at the consult, he said the endoscopy was the gold standard for testing for Celiac. When I asked my primary Dr (when she referred me to the GI), she said the GI dr would do blood tests. My primary was the one who stated she thought I had Celiac.

If my biopsy is negative, should I ask the GI Dr for a Celiac panel or ask my primary dr? 

[answerseeker]

Biopsy is the gold standard. It will show more than blood tests

[MChase]

Can't one have negative biopsy and still have positive blood tests and be Celiac? I am not sure how many biopsies he took of the small intestine. The nurse said a total of 7 biopsies from both my colonoscopy and egd, but she didn't know how many from what section.

[answerseeker]

You could but I think they will still use the biopsy as the diagnostic tool. Others can chime in if they have a different opinion. From my understanding, without damage there won't be antibodies in the blood. However, damage is speradic and could be missed in the biopsy sample which is why they should take 4-7 samples.

Most people have had neg blood work and positive biopsy but I have seen a few with the opposite

[shadowicewolf]

  On 10/16/2013 at 7:53 PM, MChase said:

Can't one have negative biopsy and still have positive blood tests and be Celiac? I am not sure how many biopsies he took of the small intestine. The nurse said a total of 7 biopsies from both my colonoscopy and egd, but she didn't know how many from what section.

Yes, I am a person who has.

 

The thing with the biopsies is that the doctors can miss damage. Most damage is microscopic.

 

You only need 4 of the 5 dx criteria to be dx'd with celiac according to the leading expert of it.

 

Positive blood test

Positive Biopsy

Positve genetic test

Symptoms related to celiac

Symptoms resolve on the gluten free diet

 

edit: no idea why my post is displaying weird.

[cyclinglady]

That's weird! U of Chicago tells doctors to first take a blood test and then take biopsies. How did your doc justify the endo to insurance? He must not suspect celiac disease.

There is still a chance to miss damage on a biopsy. I would think that you would need the blood test to rule out celiac disease as other things can produce Villi damage (per U of C website).

[Celtic Queen]

I'm another with a positive blood test and negative biopsy.

[MChase]

Cyclinglady,

I thought it was odd that he would do an endoscopy before blood tests. When I asked about it, he said he was requesting what blood tests the hospital did. I was in the ER in August for extreme pain. They said diverticulitis. My primary (I've been seeing for 8 years) said it was not that but definitely either Celiac or Ulcerative Colitis, she sent me to the GI with a request for Celiac and IBD testing.

[ravenwoodglass]

Call your regular doctor in the morning and ask for a slip for the blood work Once the blood is drawn since you already had the endo you can start the diet. You may feel better even before you get the results back. You also may find the gastritis is gluten related and heals once you are gluten free.

[SkyBlue4]

My GI doctor diagnosed celiac disease based on my bloodwork. He informed me that the outcome of my endoscopy and biopsies would not change the diagnosis but would simply help him assess the extent of the damage. I've heard from several doctors now that it is very easy to miss celiac disease since the scope can only reach the entrance to the small intestines.

[answerseeker]

  On 10/16/2013 at 10:06 PM, SkyBlue4 said:

My GI doctor diagnosed celiac disease based on my bloodwork. He informed me that the outcome of my endoscopy and biopsies would not change the diagnosis but would simply help him assess the extent of the damage. I've heard from several doctors now that it is very easy to miss celiac disease since the scope can only reach the entrance to the small intestines.

that's what my GI dr told me. it seems maybe they will be changing the way they diagnose since there are so many inconsistencies with biopsies. I went through a lot of negative testing before finally breaking out with DH and was diagnosed based on that. I thought my negative results were from being on prednisone (straight through my IV and through a shot in the hip so it was a lot of prednisone) but after reading these responses I'm thinking biopsies are hard to see the damage. And not to mention if the pathologist isn't trained in celiac they will miss it.

 

this is an interesting thread to see how many have had negative biopsies!

[GFinDC]

Hi MChase,

 

It would be better to get the full celiac antibodie panel now.  Even if the biopsy doesn't show celiac disease, your blood antibodies may show it.  The nice things about having the test results for antibodies is you can get them tested again later and verify if they have gone down or not.

 

I think you meant to say no scalloping right?  A scalloped appearance of the small intestine is how they describe the advanced villi damage.  Scalloping doesn't show up for less advanced damage though.  That's why they take the biopsy samples to check them under a microscope.  Any villi damage is a bad thing though.

[cyclinglady]

  On 10/16/2013 at 10:02 PM, MChase said:

Cyclinglady,

I thought it was odd that he would do an endoscopy before blood tests. When I asked about it, he said he was requesting what blood tests the hospital did. I was in the ER in August for extreme pain. They said diverticulitis. My primary (I've been seeing for 8 years) said it was not that but definitely either Celiac or Ulcerative Colitis, she sent me to the GI with a request for Celiac and IBD testing.

Maybe he thought the ER ran a Celiac panel,but I doubt it. Get the blood test and then get off gluten! Take copies of testing procedures from reputable sites (e.g. University Hospitals) if you get resistance from him.