Eeek confused! Positive biopsy, negative blood test???

[sealy-yak]

Ok, so....I am super confused by my test results!! Brand new to this site....actually created an account just to ask this question. Hello, celiac world.  I'm hoping someone might have knowledge or experience to share, to shed some light on my confusing test results....

I was getting an upper endoscopy for another reason, and they just happened to notice that my small intestine looked odd. "Nodular," they said. Doc took some biopsies, and came back with this:

"Small intestinal mucosa with mild focal intraepithelial lymphocytosis as well as mild focal villous atrophy."
And: "lymphocytosis and atrophy are very mild, which can be seen in early or partially treated celiac disease, other food allergies, infections, chemical injury by drugs, autoimmune diseases, and Crohn's disease."

They did the blood/antibody tests (after I'd been eating a bunch of gluten, as I always used to) and it all came back negative. Very clearly within normal range. My celiac gene test was "equivocal".....my doc (actually, she's a PA) said this basically means not certain either way. Not a solid yes or no.

I was tested for iron levels, other nutrients, thyroid test.....all were totally normal.

There's no history of celiac disease in my family. 

But....my doc says we should just assume I have celiac disease????

I'm just really, really confused. The biopsy result listed all sorts of other possible issues that could cause "mild villous atrophy"....shouldn't I be checked for some of those? And does anyone have any clue what equivocal actually means? I've never had any obvious symptoms of celiac, that I noticed.....but my stomach started feeling mildly more healthy after starting to go gluten-free. I've only been gluten free for a month. But I wonder if the slight improvement in how I felt was just because I was eating less junk food and more fruits and vegetables in place of grains/sweets.

Basically, my question is.....does this seem like the right course? Should I get a second opinion? 

I'm ready to embrace the whole gluten-free life if that's what is needed....but I don't want to be misdiagnosed and make this change for no real reason.....help? Haha. Thanks in advance.

[kareng]

I would hope they would check for the other reasons for the endoscopy results.  A GI might not check for all of those so you may need to check with your regular doctor to start that process.

[sealy-yak]

Thank you! My PA said that she still thinks it's celiac....but I don't feel like she's fully explained why. Some people are hard to get a solid answer out of! I think I'm gonna get a second opinion somewhere else.....appreciate the feedback. Makes me feel a little less crazy

[notme]

the whole celiac/doctor issue is as frustrating as it is common, unfortunately   my gp, who knows full well that i have celiac, tried to give me this new 'miracle drug' for ibs-d when i told him i was still having indigestion/inflammation for seemingly no reason.  "it's expensive, but i have a coupon for the first month"  O BOY LUCKY ME!  i told him, ok, that i would try it.  (i think i have an idea of what my problem is and i originally asked for something different to try to see if it would work.  he didn't even know what it was)  i'm not gonna try it.  it's a narcotic, it has side effects i don't need or are the same as my symptoms.  i'm gonna switch doctors.  and switch doctors again and again until i find one that KNOWS MORE ABOUT THIS THAN ME.  on top of that, they computerized all their records, which i have been going there for 20 years, ASKING WHAT I'M ALLERGIC TO!  i said:   umm, don't you have that in my MEDICAL RECORDS??!!  well, we have your paper records.  i said, i'm HERE.  don't ya think ya shoulda pulled my file out??  i mean, y'all knew i was coming.  you know, the appointment thing.......

LOLZ yeah, i've been gluten free for 6 years, and this clown tells me 'you know, you can't drink beer'  i said yes i can.  he says no, you can't.  i said why not?  because of the alcohol, haha?  no, because it has hops in it and if you're celiac, you can't have hops.  i said it's BARLEY.  O MY GOSH!!!!!!!!!!!!  i said, you're the doctor.  rolled my eyes and left.

welcome to the board  sorry for all the yelling, lolz.  

[Sugarcube]

Sealy-yak - Can you confirm if they did the Full Celiac Panel? Some Celiac blood tests are more reliable than others. 

 

[sealy-yak]

Ok, so I was gonna type this all up but realized it would be SO much faster to use screen caps  These are the lab results I could find on my online chart thing. 

[sealy-yak]

notme.....Wowww that is pretty bad! Eeesh. It's amazing that you're so informed, but yeah.....the point of going to a doctor is for them to be able to help/teach us, and not the other way around! lol

[Sugarcube]

The Celiac genetic test has limited diagnostic value as can be present in about 40% of the general population.

Although your ttg is negative, they should consider running the Anti-deamidated gliadin IgA & IgG test for a more complete picture. Sometimes the ttg can be a false negative even if you are not igA deficient.

[frieze]

way incomplete blood testing, and now that you are gluten free it is too late, you would have to do a challenge.

[squirmingitch]

2 hours ago, frieze said:

way incomplete blood testing, and now that you are gluten free it is too late, you would have to do a challenge.

I AGREE!!!!

[sealy-yak]

Hey everyone, thank you for all your help. This is an awesome community.  

Without intending to, I think I ended up doing a gluten challenge. My (wonderful, well-meaning) hubby tried to make normal and gluten-free pasta at the same time for lunch, and I think he must have accidentally cross contaminated mine--I got SO sick about four hours later. Really bad stomach pain/cramps that came on suddenly, and some other symptoms I'd rather not mention :X Thank goodness, I felt mostly better when it got out of my system.

Five days later, I got a bubble tea from my favorite place--made sure to get something without gluten, but once again there was probably CC. I had exactly the same symptoms as the last time, about four hours later. Such a nightmare. Sad about this one. I love bubble tea, ahhh. 

So I'm thinking I'm joining the gluten-free for life club! It's crazy . . . I never had reactions like this ever before. Guess my body became more sensitive? Thanks again, all, for your advice!!!