What to do when test results are inconsistent?

[Emilie]

My husband has had mild GI issues most of his adult life, heart burn and occasional bloating mainly. His heartburn has been under control for years through diet and the bloating is occasional and fairly mild. He is very healthy and active 39 year old with no other health issues. At a routine annual physical he mentioned the occasional bloating to his doc who threw the celiac Ttg-iga test into his routine blood panel. Well, to our surprise, his ttg number was 87, very high and as his doc put it “I think you have celiac disease.” We began to adjust to the idea, did our research, and schedule the biopsy to confirm. Also to it surprise the GI said his intestines looked great and the biopsy came back inconclusive. Ugh, so we aren’t sure what to do next. We will meet win the GI to discuss next steps but I have a feeling based on our brief conversation after the EGD that he’s either gonna day just go gluten free and see how you feel or you don’t need to go gluten free because I see no evidence of celiac. I don’t like either of these answers because from what I’ve read, there are pros and cons to both approaches. We have 4 kids and want to know definitively if he has it or not. We don’t want to go gluten free if it’s unnecessary and we certainly don’t want to keep ingesting gluten if he does have celiac. Has anyone been in a similar situation and if so, what happened? How did you confirm or rule out celiac?  I’m considering getting a second opinion from a celiac center but thought I would pose the question here first. 

[cyclinglady]

1 hour ago, Emilie said:

My husband has had mild GI issues most of his adult life, heart burn and occasional bloating mainly. His heartburn has been under control for years through diet and the bloating is occasional and fairly mild. He is very healthy and active 39 year old with no other health issues. At a routine annual physical he mentioned the occasional bloating to his doc who threw the celiac Ttg-iga test into his routine blood panel. Well, to our surprise, his ttg number was 87, very high and as his doc put it “I think you have celiac disease.” We began to adjust to the idea, did our research, and schedule the biopsy to confirm. Also to it surprise the GI said his intestines looked great and the biopsy came back inconclusive. Ugh, so we aren’t sure what to do next. We will meet win the GI to discuss next steps but I have a feeling based on our brief conversation after the EGD that he’s either gonna day just go gluten free and see how you feel or you don’t need to go gluten free because I see no evidence of celiac. I don’t like either of these answers because from what I’ve read, there are pros and cons to both approaches. We have 4 kids and want to know definitively if he has it or not. We don’t want to go gluten free if it’s unnecessary and we certainly don’t want to keep ingesting gluten if he does have celiac. Has anyone been in a similar situation and if so, what happened? How did you confirm or rule out celiac?  I’m considering getting a second opinion from a celiac center but thought I would pose the question here first. 

I think you need to find out how many biopsies were taken and the location of them. Get the actual copy of the pathologist’s report and the doctor’s notes on the procedure and other lab results.  Consider asking for the rest of celiac panel which includes the EMA and DGP.  Some slight elevations on the TTG can be due to other things like IBD or other autoimmune issues, but his result is pretty high.  Did you know that the small bowel is the size of a tennis court?  Easy to miss damage areas.    Consider too a pill camera because that damage can be further down and away from the reach of the endoscopy.    Consider trialing the gluten-free diet.  If the TTG goes down, it can support a diagnosis.  Ask the GI how many celiac patients has he diagnosed.  Consider a second opinion and hand over the file (lab tests) to the consulting GI.  

You can see there are so many things that could have been missed or errors made.  

Keep advocating.  Something is wrong!  

[RMJ]

He could try going gluten free for six months and see if the antibody levels go down.  If so, it would indicate that gluten causes him to make auto antibodies (antibodies against oneself).

[Emilie]

50 minutes ago, cyclinglady said:

I think you need to find out how many biopsies were taken and the location of them. Get the actual copy of the pathologist’s report and the doctor’s notes on the procedure and other lab results.  Consider asking for the rest of celiac panel which includes the EMA and DGP.  Some slight elevations on the TTG can be due to other things like IBD or other autoimmune issues, but his result is pretty high.  Did you know that the small bowel is the size of a tennis court?  Easy to miss damage areas.    Consider too a pill camera because that damage can be further down and away from the reach of the endoscopy.    Consider trialing the gluten-free diet.  If the TTG goes down, it can support a diagnosis.  Ask the GI how many celiac patients has he diagnosed.  Consider a second opinion and hand over the file (lab tests) to the consulting GI.  

You can see there are so many things that could have been missed or errors made.  

Keep advocating.  Something is wrong!  

 

[Emilie]

What other questions would you recommend we ask if the GI doc at our appointment on Friday? I was pretty surprised after the EGD when the GI popped in to tell me all looked good like it was nothing and then when I asked why his TTG test was 87 he looked super surprised (The GP ordered the blood work, not him). It really made me wonder if he didn’t even realize why he was doing the biopsy and didn’t bother to test more than one location.  So I want to make sure I ask the right questions to help us narrow down what to do next. 

[cyclinglady]

When I had my first endoscopy, my GI told me that visually everything looked good, but my biopsies revealed extensive villi damage.  I just had a repeat endoscopy.  This time the equipment was newer and visually my GI could see healthy villi on the scope (he gave me a photo).  No need to wait for biopsies.  We knew I had healed.  Maybe your GI has an older scope.  Let’s hope he did not make a major diagnostic  error by not properly obtaining biosies to confirm celiac disease.  If he goofed, consider that second opinion.  Who knows what else he missed if he did not even read the chart!  

[Emilie]

So curious what you all think our next steps should be.  I'm looking at his results and have summarized them below:

IgA Serum 195

tTG IgG 87.7

Deamidated Gliadin IgA Ab 14.7

The pathology report says duodenum, second and third part biopsies (but does not specify how many samples were taken other than "duodenum - second, third part are multiple fragments of tan soft tissues that are 1x0.3x0.2 cm in aggregate.  The specimen is entirely submitted in one cassette."  Results - minimal increased intraepithelial lymphocytes (32/100 enterocytes), normal villous architecture.  The GI also said visually everything looked good, no blunting, etc.

He did not appear to have the EMA test or genetic testing.  I'm wondering if these tests are our next steps?  Or maybe even to check for vitamin deficiencies because those weren't tested either?

Our general doc says he feels pretty strongly that he does have celiac and should go gluten free for a few months and test the tTG numbers again and assuming they are going down, that is enough.  Agree?  Should we get more tests done before removing gluten? 

Thoughts?