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.

[RMJ]

I had an endoscopy where there was no visible damage but biopsies showed damage. I even asked beforehand if the endoscope had good enough magnification to see the villi! 

I hope you get a clear answer from the biopsies.

[Alibu]

MY BIOPSY WAS NEGATIVE!!!  HOW??

Obviously I'm thrilled it was negative, but I'm so confused now.  

[knitty kitty]

@Alibu,

There may not be textbook intestinal damage in the early stage of Celiac Disease!!!

Keep in mind that the endoscope used can only reach about a foot past the stomach, while the small intestines are twenty-two feet long!  Damage can be patchy or out of reach of the scope.  Early celiac disease may not show damage at all.

Don't compare your tTg IgA numbers with others.  Every lab uses their own range values.  Tests from different labs are not using the same scale and shouldn't be compared with other people's numbers from a different lab.  

You've got the Celiac genes and the positive antibody test and the EMA test.  Next step is a Gluten Free diet trial and look for improvement. 

Celiac Disease can be diagnosed using genetic testing and response to a gluten free diet!  I'm seronegative, but DQ 2.5.  My doctors were clueless.  They didn't see any classic textbook damage (complete villus atrophy), so didn't bother to biopsy.  Ack!   Much of the damage is microscopic and not visible to the naked eye.

This study followed people who showed no or little damage at first....they accrued more damage over time.

Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice

https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/

There's a move to be less reliant on endoscopy for diagnosis.

Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment

https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/

Welcome to the tribe!

Edited June 15 by knitty kitty
Clarification

[Alibu]

@knitty kitty Thank you for your response!!  So do you think my doctor might still diagnose celiac even with the negative biopsy?  At this point I'm just wondering like do I have to be super careful when I eat places for cross-contamination, or do I just have to eat gluten free and not worry about the damage so much as the symptoms, you know?  Like with celiac I know my body is attacking itself and doing damage (although apparently not haha) and with an intolerance it certainly doesn't feel good, but it's not doing the same kind of damage, you know?

I sent a message to the doctor asking if I should do a video capsule endoscopy or if we should have a second opinion on the pathology but ugh, I just want a clear answer so whatever it is, I can move forward!!

[knitty kitty]

@Alibu,

I think you should send the National Institute of Health peer reviewed studies I linked to your doctors.  Some doctors don't keep abreast of the recent updates to Celiac diagnosis.  They may still be operating under the old idea of waiting until intestinal damage is at a Marsh score of 3C or 4 (complete villus atrophy) before diagnosis of Celiac is made.  Better to diagnose before it gets that severe.  

Much of the damage to the small intestines is microscopic and NOT visible to the naked eye.  

Since you've got Celiac genes, it would be beneficial if you kept to a strict gluten free diet.  Exposure to gluten and an environmental stress (like an infection or physical stress or emotional trauma) are needed for the Celiac genes to become activated.  If you don't have active Celiac now, a gluten free diet now will help prevent developing it in future.  

Edited June 15 by knitty kitty
Typo correction

[Alibu]

@knitty kitty Thank you for those, I will definitely bring them up!  I did send a message to my doctor basically asking what they think so I'll go from there.  He may very well just decide that this was enough to diagnose celiac, but I have no clue what his thoughts are right now.  I also asked for a second opinion on the pathology.

[knitty kitty]

@Alibu,

Just wanted to add... Migraines can be caused by thiamine insufficiency.  I used to have them, regularly, but haven't since supplementing with thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and Magnesium Threonate.  These forms get into the brain easily and really improve migraines.  I do still get Ophthalmic migraines which are triggered by computer screens.  It's permanent damage from nutritional deficiencies.  An Erythrocyte Transketolace test is a more accurate test for sufficient thiamine.

Keep us posted on your progress!

Edited June 16 by knitty kitty
Typo correction

[Alibu]

@knitty kitty My whole family has migraines and I started getting them at age 19, so I'm not sure mine are related to gluten, although I do feel like obviously the more inflamed my whole system is, the more likely I am to suffer from more of these things.

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. 

[knitty kitty]

@Alibu,

Migraines ran in my family as well.  Correcting my Thiamine insufficiency made a dramatic improvement in frequency and duration.  

If you take Thiamine, B12 and B6 together, they have analgesic (pain relieving) properties.  Taking thiamine every day has cut down on their occurrence and severity for me.  

Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide).  These forms get into the brain easily.  Magnesium Threonate gets into the brain easily, too, and helps thiamine work.  My brain gave a sigh of relief when I first took it, and no migraines.

Yes, lowering histamine levels helps one feel better, too.  Vitamin C and B12 help reduce histamine.  A low histamine diet can help, too.  DAO supplements lower histamine, as well.  DOA is a digestive enzyme we can run short on.  

Edited June 17 by knitty kitty
Typo correction

[Alibu]

23 hours ago, Scott Adams said:

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. 

From what I understand, my high antibody level and EMA positivity rule out NCGS because those are not typically elevated in NCGS.  That's what I've read anyway?

 

My doctor is calling it "potential" or "latent" celiac disease, which honestly is just frustrating.  I don't have celiac but I also don't not have celiac.  I'm just in limbo and I can either choose to continue eating gluten and see if it progresses, or I can go gluten free and see how I feel.   I hate this gray area - I just wanted something concrete and definitive and now I kind of wish I never started this whole process.

[Alibu]

15 hours ago, knitty kitty said:

@Alibu,

Migraines ran in my family as well.  Correcting my Thiamine insufficiency made a dramatic improvement in frequency and duration.  

If you take Thiamine, B12 and B6 together, they have analgesic (pain relieving) properties.  Taking thiamine every day has cut down on their occurrence and severity for me.  

Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide).  These forms get into the brain easily.  Magnesium Threonate gets into the brain easily, too, and helps thiamine work.  My gave a sigh of relief when I first took it, and no migraines.

Yes, lowering histamine levels helps one feel better, too.  Vitamin C and B12 help reduce histamine.  A low histamine diet can help, too.  DAO supplements lower histamine, as well.  DOA is a digestive enzyme we can run short on.  

I can't remember if I tried taking thiamine at one point and it didn't agree with me, or if I tried it but didn't take it very long.  I may have to try that out again.  I have taken magnesium threonate in the past and unfortunately it did not help with my migraines.  I do take a monthly injectable migraine preventative and I know not to eat after 8pm or I will wake up with a monster migraine (not sure why the time is a trigger, but it's there, LOL).

I definitely have a histamine issue.  I think I actually may have MCAS but never been diagnosed with that.  That's good to know about Vitamin C and B12.  Thanks!!

[knitty kitty]

@Alibu,

It's the thiamine (in the forms TTFD or Benfotiamine) that can get into the brain easily and improve migraines.  The magnesium Threonate won't help by itself.  Taking  the thiamine regularly will keep them away.

Sounds to me like your doctor is looking for the Marsh 3C or 4 Stage (total villus damage) to make his diagnosis.  Those studies I sent show that damage at Marsh 3C or 4 will develop over a longer period of time. Newer diagnosis criteria would diagnose you with Celiac with your HLA DQ 2.5 genes and high antibody levels alone.  You would benefit by following a gluten free diet.

I have type two diabetes.  I used to wake up with migraines if I ate high carbohydrate foods before bed.  My blood glucose level stayed too high throughout the night.  I'd wake dehydrated, foggy, and headachy/migraine developing the next morning.  I was low in Thiamine.  Thiamine is needed to make insulin.  Diabetics have a greater metabolic demand for thiamine because they lose more thiamine in their urine.  98% of diabetics are thiamine deficient.  Diabetes is another autoimmune disease that can accompany celiac disease.  Have you had an A1C test?   

Eating a diet heavy in carbohydrates uses up available thiamine quickly.  If you don't have sufficient thiamine, the body stores carbohydrates as fat.  The SIBO bacteria flourish with a high carbohydrate diet.  MCAS develops as the body fights the SIBO.  

Thiamine improves MCAS.  Mast cells make histamine and release it as part of the inflammation response.  Mast cells can become  hypersensitive and release histamine at the least provocation in Thiamine insufficiency.  Mast cells need Thiamine to help hold their wad.  

MCAS often occurs with and is exasperated by SIBO.  I found the Autoimmune Protocol Diet (Dr. Sarah Ballantyne) helps with both.  This Paleo diet starves out the SIBO bacteria and calms the MCAS.  If you change your diet, you change your intestinal flora.  Following the AIP paleo diet and thiamine made a noticeable difference in my health fairly quickly.  

Thiamine works with the other B vitamins to make enzymes that keep the body functioning well.  A B Complex, Vitamin C, and extra thiamine like Benfotiamine will help immensely.  

I hope this helps.  I had to decide that my Celiac genes were switched on and causing health problems even though I did not have the high antibody levels and visible damage in my intestines needed to make a textbook diagnosis.  You know your body best.  I knew Celiac was my problem.  I made the necessary changes and feel much better for it.  

[Alibu]

@knitty kitty I see, thank you!!  Yes, basically the biopsy just said "normal villous architecture."  It didn't give any kind of Marsh score at all, but it sounds like it would be a 0 based on the biopsy report, which is why he's saying it's Latent or Potential celiac.  It's just weird because I know in Europe if I was a child, they wouldn't even do the biopsy, so how does this system make any sense??

I have had an A1c and it's normal.  I do know that I have insulin resistance, however, so there's that.

Wow, thank you for all this information!!!  I have a lot of reading to do!

[knitty kitty]

@Alibu,

Start with this study...

High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial

https://pubmed.ncbi.nlm.nih.gov/23715873/

"Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin, and improve glucose tolerance in patients with hyperglycemia. High-dose thiamine supplementation may prevent or slow the progression of hyperglycemia toward diabetes mellitus in individuals with impaired glucose regulation."

They used 100 mg of thiamine three times a day.  They don't say which kind of thiamine was used.  Benfotiamine is my recommendation because it has been shown to promote intestinal health and helps with leaky gut and SIBO.  Thiamine forms including Benfotiamine and TTFD are safe and nontoxic even in higher doses.  

The old "gold standard" diagnosis is changing.  It must be confusing for doctors as well.  I went through all this myself, so I understand the frustration of the vagueness, but set your course and watch as your health improves.

Keep us posted on your progress!  

P.S. here's another link....

https://pubmed.ncbi.nlm.nih.gov/39642136/

Edited June 17 by knitty kitty
Added Post Script