Waiting on biopsy after positive bloodwork, but also not really believing this is real

[Alibu]

I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive.  I also found out through 23 and me that I do have the HLA-DQ2.5 gene so I thought it would be good to repeat given my ongoing symptoms.

Well my blood work came back with a ttg-iga level of 152.6 with a reference range of <15 and my EMA was positive and EMA titer was 1:10 with reference range of <1:5. I guess I'm nervous that I'm going to do the biopsy and it's going to be negative again, especially since I also had an endoscopy in 2020, not to look for celiac but just as a regular 5 year thing I do because of all my GI issues, and they didn't see anything then either.

I have no idea how long the EMA has been positive but I'm wondering if it's very recent, if the biopsy will show damage and if so, if they'll say well the biopsy is the gold standard so it's not celiac?

I of course am doing all the things to convince myself that it isn't real. Do a lot of people go through this? I think because back in 2017 my ttg-iga was elevated but not a huge amount and my EMA was negative and my biopsy was negative, I keep thinking this time it's going to be different. But this time my ttg-iga is 152.6 with reference range <15, and my EMA was positive. BUT, my titer is only 1:10 and I keep reading how most people here had a ttg-iga in the hundreds or thousands, and the EMA titer was much higher. So now I am convinced that it was a false positive and when they do the biopsy it'll be negative.

[Scott Adams]

It’s completely understandable to feel anxious and doubtful, especially after previous negative results despite ongoing symptoms. Your current bloodwork—with a TTG-IGA of 152.6 (vs. <15) and a positive EMA (1:10)—is significantly more concerning for celiac disease than your 2017 results. While your EMA titer isn’t as high as some others report, it’s still positive, and the dramatic rise in TTG-IGA strongly suggests an immune response to gluten. False positives this pronounced are rare, especially with both tests aligning. That said, the biopsy could still be negative if damage is patchy or early-stage (some celiacs take years to develop visible villi atrophy). But given your genetic risk (HLA-DQ2.5), persistent symptoms, and now highly abnormal serology, celiac is very likely—even if the biopsy isn’t definitive. Many people go through this "waiting and doubting" phase, especially after prior inconclusive testing. Try to trust the data: your body is clearly reacting to something, and gluten is the prime suspect. Hang in there—you’re closer to answers now.

[Alibu]

2 hours ago, Scott Adams said:

It’s completely understandable to feel anxious and doubtful, especially after previous negative results despite ongoing symptoms. Your current bloodwork—with a TTG-IGA of 152.6 (vs. <15) and a positive EMA (1:10)—is significantly more concerning for celiac disease than your 2017 results. While your EMA titer isn’t as high as some others report, it’s still positive, and the dramatic rise in TTG-IGA strongly suggests an immune response to gluten. False positives this pronounced are rare, especially with both tests aligning. That said, the biopsy could still be negative if damage is patchy or early-stage (some celiacs take years to develop visible villi atrophy). But given your genetic risk (HLA-DQ2.5), persistent symptoms, and now highly abnormal serology, celiac is very likely—even if the biopsy isn’t definitive. Many people go through this "waiting and doubting" phase, especially after prior inconclusive testing. Try to trust the data: your body is clearly reacting to something, and gluten is the prime suspect. Hang in there—you’re closer to answers now.

Thank you so much for your reply!  I keep asking ChatGPT if it can be wrong and it basically keeps telling me the same thing as you did, but then I'm like oh I was so ready to embrace the diagnosis back in 2017 and then they were like nope, you're good, carry on, so I think I'm just really guarded and thinking it's going to be a repeat of last time.  Of course, I also thought my bloodwork was going to be a repeat of last time and it definitely wasn't.  LOL Could the 2 bowls of pasta the night before have shot up my results?  

I know either way I'm going to give up the gluten because clearly my body doesn't like it.  But for me it's the difference between being uncomfortable (the sensitivity/intolerance) and it doing actual damage (the celiac) so I'm just like ugh, I just want answers.  

I think I'm also just like this can't be real.  I get migraines and I have IBS and all these little things, but nothing is ever really WRONG, you know?  And nobody else in my family has ever been diagnosed with celiac (although they are now being tested for it!) so this feels like it can't be real because it came out of nowhere and I'm also in my 40's so I'm like what the heck LOL

Denial is quite the beast!

 

[Scott Adams]

I totally get it—the mental back-and-forth is exhausting! After the letdown of 2017, it makes sense to brace for another "false alarm," but this time really is different. That pasta the night before? Unlikely to cause such high TTG-IGA/EMA results (those antibodies build up over weeks/months, not overnight), but it does mean your immune system is actively reacting to gluten—which fits celiac, not just sensitivity.

The family history thing is so relatable! Celiac often flies under the radar because (a) symptoms get mislabeled as "IBS," "anxiety," or "just aging," and (b) older generations were rarely tested. (My aunt was diagnosed at 65 after decades of "nervous stomach"!) And late-in-life diagnoses are super common—the immune system can flip a switch after stress, illness, even hormonal shifts.

The migraine/IBS/"nothing’s really wrong" spiral? CLASSIC celiac. Those "little things" add up to a big picture: your body’s been waving red flags for years, but medicine is terrible at connecting dots until labs force the issue.

Whether the biopsy confirms it or not (patchy damage is a thing!), your bloodwork screams "gluten is the enemy." Denial’s just your brain trying to protect you from hope—but you’ve already done the hard part by chasing answers. However it shakes out, you’re finally on the path to feeling better.

[Alibu]

@Scott Adams thank you again!  You definitely 100% get it!!  It's so helpful to know that what I'm going through is normal and part of the process.

My endoscopy just got scheduled for June 10 (I'm going to be traveling or else they could have gotten me in earlier) so I have 2 more weeks of eating gluten.  I'm assuming I should just go to the endoscopy and start going gluten free as soon as it's done?  Or should I wait for the biopsy to come back just in case they have to repeat something?  

[Scott Adams]

First, be sure to eat tons of gluten in the two weeks leading up to the endoscopy--like 4 slices of wheat bread a day. Talk to your doctor about when to go gluten-free, but normally you can do so after all tests are done.

[Alibu]

Oh I definitely am doing that!  I'm having a "last hurrah" leading up to the endoscopy and I am making sure to eat as much gluten as I can now.  I will say I am BLOATED but I've been this way for so many years, it's kind of my norm.  Just a couple more weeks until I have answers though, I hope!

[Scott Adams]

Let us know how things turn out.

[Alibu]

I just had my endoscopy the other day and the doctor took 12 samples because he said if we're going to find something we're going to find it today LOL. But when he got down there, he said everything looked good. So I have it in my head again that it's going to be negative because everyone I've heard of who had a positive biopsy had their endoscopies where the doctor was like yep, I can see the damage. My tissues all look great apparently.

So if they come back negative, I'm not sure where to go from here. Could it still be a non-celiac gluten sensitivity even with my blood work? I thought NCGS didn't show up on blood tests. Is it possible that the biopsy still comes back positive even if everything looked healthy on endoscope? I had it done at a big hospital in the state, so I would think they'd have the kind of equipment where they'd be able to see it well. I even have pictures in my report and they don't seem to have the damage that others have seen.