TTG still elevated?

[lucas21]

Hi everyone. I was diagnosed with celiac about 4 months ago. I had an initial ttg-iga test that came back with a 16, and then I had an endoscopy with biopsies that showed I have marsh 3c damage. Since then I have been very strict, checking labels on everything, my entire household has gone gluten-free, I don't eat out other than very rarely at gluten-free places, we replaced things like the colander, cleaned a bunch etc. The only time I've been in a glutenous household was when I went to visit my family in mid-October, and I only ate food I had made myself, and was very cautious.

My follow-up labs came back. TTG-IGA 27.9, and Gliadin (deamidated) IGA 4.7 (negative). My GI said I must be getting gluten in my diet somehow, but I'm at a complete loss as to how. I've even checked all of my medications. I'm also having way fewer symptoms than I was having when I was actively eating gluten. No more bloating, nausea, bowel movements only occasionally weird, fewer headaches, less tired. I'm baffled. She wants to do more labs in 3 months and if they are not negative, another endoscopy.

One of the liver enzymes they test has gone down to normal for the first time in years, the other is still elevated but my primary thinks it'll go down with time. My vitamin E and D deficiencies are getting better.

I don't know what to do. I've been so careful. I also had an existing eating disorder that had already been made worse by this, and this news is definitely going to kick it up several notches.

I do have other health conditions, if context is helpful: hypothyroidism (I've never been tested for hashmitos but I'm guessing it's likely that), temporal lobe epilepsy, hypermobile Ehlers-Danlos Syndrome, sleep apnea, probable fibromyalgia, adhd, ASD, depression/anxiety, chronic migraines (though they've been better since cutting out gluten), asthma, eczema, probable MCAS and POTS. I also have fat on my liver but not enough to be diagnosed with NAFLD.

Is this normal? Is the only reason this could be happening that I'm *still* getting gluten in my diet, and if so how on earth am I supposed to find out how when I've already done so much? Any help/advice appreciated. Thank you.

[trents]

Welcome to the forum, lucas21!

Are you still consuming dairy and/or oats? Dairy is known to cause inflammation/villi blunting very similar to celiac disease in some people. About 10% of celiacs react to the protein avelin in oats like they do to gluten.

Are you taking NSAIDs frequently? They can also damage villi.

Do you use a lot of "gluten free" processed foods? Look for the label "Certified Gluten Free" as opposed to "Gluten Free." The former meets stricter standards.

[RMJ]

Were the tests run at the same lab?  Unlike most lab tests, celiac numbers can’t be compared from tests made by different manufacturers because of how the units of measurement are set.

This must be frustrating!  I’m glad that you at least feel better.