Is it celiac?

[Lintol]

Hi, hopefully its ok to ask this here, or if not feel free to delete!  I was given a "soft" diagnosis for celiac back in 2019. I had been off and on gluten free for years, but started eating gluten again two weeks before my upper endoscopy. This is what they found:

-Immunoglobulins were not elevated, even after two weeks of eating gluten

-Upper endoscopy showed increased intraepithelial lymphocytes

-I had one of the genes for celiac. 

At the time, my GI doc said, while it wasn't a slam dunk for celiac, she thought given that I already felt like I had an intolerance to gluten, I should just steer clear. She said either my gluten-free diet was keeping it at bay, or it was just developing. She was perplexed that I had the increased IEL on endoscopy. She initially didnt expect to find anything; given that she didn't think I was "sick enough" to have celiac.

I am still happy being gluten-free, but living in a busy household with young kids can make cross contamination more likely, I'm just wondering how fanatical i should be. Doc said the fact that my immunoglobulins were not elevated was highly unusual. But she didn't know of anyhting else that could elevate the intraepithelial lymphocytes there. 

Has anyone here had celiac with increased IELs but no immunoglobulin elevation? 

Thank you!

Lindsey

[Scott Adams]

What you’re describing actually comes up more often than people think, and you’re not alone in being in that “not a slam dunk, but not nothing either” category. Increased intraepithelial lymphocytes can be an early or mild sign of celiac disease, but they’re not specific to it—other things like infections, medications, or even non-celiac gluten sensitivity can sometimes cause that finding too. The tricky part in your case is the timing: two weeks of eating gluten is often not long enough for antibody levels to rise, especially if you had already been mostly gluten-free beforehand. Many guidelines suggest a longer gluten challenge (sometimes several weeks or more) to get reliable blood test results. So it’s entirely possible that your antibodies stayed normal simply because your body hadn’t had enough exposure yet, not necessarily because celiac isn’t present.

Given that you carry a celiac-related gene and had IEL changes on biopsy, your doctor’s “early or developing celiac” idea is reasonable. Some people fall into what’s sometimes called “potential celiac,” where the immune system is reacting but hasn’t fully progressed to classic damage or positive bloodwork. The fact that you feel better gluten-free also matters clinically, even if it’s not definitive on its own.

As for how strict to be, that’s the hard part. If this is true celiac (even early), then cross-contamination does matter and being careful is important. If it’s more of a sensitivity, you may have a bit more flexibility. Since you don’t have a clear-cut diagnosis, a practical approach many people take is to aim for “celiac-level careful” at home where possible (separate toaster, avoiding obvious cross-contact), but not drive yourself crazy over every microscopic risk—especially in a busy household. If you ever wanted a firmer answer, you could discuss doing a proper, longer gluten challenge with your doctor, but that’s obviously a big decision.

Bottom line: your results aren’t unusual for early or partially treated celiac, and your doctor’s guidance makes sense. You’re not overthinking it—this is genuinely a gray area, and it’s okay to balance caution with what’s realistic for your life.

[trents]

@Lintol, what kind of symptoms do you experience when you throw caution to the wind and eat significant amounts of gluten? Are the symptoms unbearable?

I'm asking because I'm wondering how feasible it would be for you to undertake a rigorous "gluten challenge" now and create the conditions for valid testing so as to get a definitive answer of whether or not you have celiac disease or are just gluten sensitive. This would involve consuming at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for several weeks. 

Your doctor should also run the "total IGA" test to check for IGA deficiency. In the case of IGA deficiency, other IGA test results (you mention the "Immunoglobulins" which I take to mean the tTG-IGA test) will be invalid.

[Scott Adams]

Very good point! Total IGA should always be part of a blood test for celiac disease.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.