Test uncertainty

[MI-Hoosier]

Hi,  I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect.   During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am 54. Do I need a biopsy to rule celiac in or out with this mixed test?

Any thoughts are appreciated.

 

[trents]

Welcome to the forum, @MI-Hoosier!

You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO. 

Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy.

The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens.

Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease.

It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin.

Here is a link to an article covering celiac disease blood antibody testing:

 

Edited March 6, 2025 by trents

[MI-Hoosier]

Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?

[trents]

To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience.

Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.

 

[MI-Hoosier]

Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring.

[trents]

Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it.

One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.