Positive blood test, negative biopsy - skeptical and looking for advice

[AllisonMcM]

Hi All,

I have been following this forum since testing positive for Celiac via one blood test a month ago (TTG IGA: 43 (normal range <15). I wanted to confirm my diagnosis via biopsy so I scheduled an endoscopy which I had last week. I just received the biopsy results and they were: no sign of Celiac but evidence of Barrett's Esophagus. I've been reading on this forum since last week how easy it is to miss Celiac via endoscopy and my doctor only took 3 biopsies. I was told by a nurse practioner in the Gastro office that my positive TTG IGA test translated to about a 98% chance that I have Celiac so I find it likely that the biopsies missed the damage. Regarding Barrett's Esophagus, I have burning gastritis pain every day which I could attribute to that but I have many other symptoms that BE would not be causing (stomach cramps, frequent/loose stools, chronic fatigue, night sweats). I am very frustrated that the biopsies did not confirm my diagnosis. Has anyone else had a positive TTG test but negative biopsy? I am planning to go off gluten starting today and see how I feel. If anyone has advice or a similar experience, I would appreciate hearing from you!

 

Thanks!

Allison

[tessa25]

If you only did the one blood test you could always have the full celiac blood tests done before going gluten free.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). The blood draw is done at your nearest Labcorp. You get your results in less than a week at walkinlab.com .

If you are high on more than just the TTG IGA you would have more proof. Or you could go gluten free now and recheck TTG IGA in three months to see if it goes down with gluten free. You would have to have the same lab run the recheck as the original test.

[pikakegirl]

I was hospitalized i 98 with symptoms and had colonoscopy and endoscopy but both missed it. Was told i might have chrones but unsure. I was discharged with steroids which i did not take. Saw 2 more gastros and they said it didnt seem like chrones but IBS. Put me in psyc and on antidepressants. Went along like this with lots of strange seemingly unrelated symptoms like hypothyroid, kidney stones, weight gain, muscle pain, high crp, gallbladder malfunction among some. But in 2007 felt like an ulcer was brewing and my 5th gastro nailed it even before the positive blood came back. I have read the damage can start at the illeum near the colon and small bowel and take time to reach the 3 ft of begining small bowel the endoscope is limited to. By 07 i had  3 positive biopsies. I think if i had taken the steroids it would have masked the symptoms even more delaying diagnosis longer, possibly to my demise.

[gluten-free Survivor]

Do Genetic Testing to see if you have the genes for Celiac disease! It's  pretty spot on and not expensive.

If you don't have Celiac disease, you may be gluten intolerance! 

I wish you all the best and hope you feel better soon. 

[kareng]

1 hour ago, gluten-free Survivor said:

Do Genetic Testing to see if you have the genes for Celiac disease! It's  pretty spot on and not expensive.

If you don't have Celiac disease, you may be gluten intolerance! 

I wish you all the best and hope you feel better soon. 

The TTG wouldn't be elevated by non-Celiac gluten intolerance 

[kareng]

3 hours ago, AllisonMcM said:

Hi All,

I have been following this forum since testing positive for Celiac via one blood test a month ago (TTG IGA: 43 (normal range <15). I wanted to confirm my diagnosis via biopsy so I scheduled an endoscopy which I had last week. I just received the biopsy results and they were: no sign of Celiac but evidence of Barrett's Esophagus. I've been reading on this forum since last week how easy it is to miss Celiac via endoscopy and my doctor only took 3 biopsies. I was told by a nurse practioner in the Gastro office that my positive TTG IGA test translated to about a 98% chance that I have Celiac so I find it likely that the biopsies missed the damage. Regarding Barrett's Esophagus, I have burning gastritis pain every day which I could attribute to that but I have many other symptoms that BE would not be causing (stomach cramps, frequent/loose stools, chronic fatigue, night sweats). I am very frustrated that the biopsies did not confirm my diagnosis. Has anyone else had a positive TTG test but negative biopsy? I am planning to go off gluten starting today and see how I feel. If anyone has advice or a similar experience, I would appreciate hearing from you!

 

Thanks!

Allison

It is possible to miss the Celiac damage .  Your TTg test is pretty high to be from something else.  A good thing to do would be to go completely gluten-free and have your blood re-tested in 6 months to see if the TTg went down.  

[GFinDC]

Yep, get the full celiac disease antibodies test panel before going gluten-free.  the antibodies start to drop after going gluten-free so the tests are not accurate.  
there have been other people post about having positive antibodies and negative biopsies.  Celiac disease testing isn't perfectly accurate yet.

[AllisonMcM]

Thank you all for the replies! I got blood drawn today for the four remaining tests on the celiac panel that were not run last month (I had the EMA run last month as well as the TTG IGA - EMA was negative). I hope that these results will give me a more definitive idea.

Thanks again!

Allison

[kviolin]

I had a similar experience except I had a full celiac panel. Ttg >100 (positive was >4) and my endomysial antibodies were positive (not to mention low vitamin d, iron, and elevated ALT/AST). My blood work alone is pretty much 100% celiac, but the endoscopy done by my first GI only came up mild blunting (no marsh score or celiac diagnosis from biopsy). Switched to a GI who is much more fluent in celiac and he did a capsule endoscopy. This does not allow a biopsy which is the “gold standard” however he said my damage was very extensive all through the second section (jejunum) of the small intestine which I don’t think would have been reached by the endoscopy. 

Edited July 14, 2018 by kviolin