Just Got My Biopsy Results From My Endoscopy And I'm Confused.

[bstefan]

Hi everyone, I was hoping someone could help me figure my biopsy results out. Long story short, my aunt was diagnosed with Celiac a few decades ago and my dad was diagnosed a few months ago, which prompted me to get tested. My blood panel came back positive for Celiac (I tested positive for 2 out of 3 antibodies, can't remember exactly what.) That was in December, but I couldn't afford to get the endoscopy done until April. Here are the results:

"The biopsy of duodenum show acid injury but no Celiac sprue. Stomach biopsies show gastritis, esophageal biopsies show acid reflux, tested negative for H, Pylori."

 

Most of the results make sense because I drink pop like it's water and I really need to stop that, but the "no Celiac sprue" thing threw me off. For the past few months I've tried cutting back on gluten, but I cheated quite a few times (on purpose and by accident.) I'd rather ask random people on the internet who actually have these problems before I talk with a doctor, since my doctors haven't been very helpful thus far. I'd appreciate any advice you could give me. 

 

[GottaSki]

Hello!

 

Do you have a written copy of the pathology report as well as the doctor's procedural report?  From what you wrote -- they only took one biopsy of the small intestine -- that is not enough and the damage listed can be attributed to early celiac disease...in fact the first two stages of the Marsh Scale for Celiac Disease are considered NON-CELIAC.

 

I'm on the wrong computer, but I'll add a link to a good description of the Marsh Scale later or you could google it.

 

Welcome

[kareng]

Were you mostly gluten-free before the endo?  That could mean you have healed most of the way.

[nvsmom]

A negative biopsy in spite of positive blood work (and 2 out of 3 tests is quite positive) has happened to a few people around here. It's not common but it is far from rare. The surface area of your small intetine is roughly that of a tennis court so if the damage was patchy, or you are fairly new to the disease, the damage could have been missed.

 

If your positive tests were the deaminated gliadin peptides (DGP) or the EMA,which are VERY specific to celiac, then you most like are a celiac. 

 

Welcome to the board.

[GFinDC]

It's a good idea to get your test results in writing.  They are your personal information and you deserve to have them.  If the doctor wants to keep a copy you could be nice and let them do that, or not.

 

The antibodies aren't made for no reason.  They indicate something is going on in your gut.  Damage can build up slowly and get worse over time, so there are different levels to the Marsh scale.  You really don't want to get to the worst level where the damage on the endoscopy is easily visible to the doctor.  It is better to stop the process before then.  The early stages are determined with a microscopic review, not visually with plain eyes.

[GottaSki]

Wow...totally missed the positive blood work.  Positive is positive.  Paul is right -- get written or electronic copies of all your tests!

[bstefan]

I searched for a little while and found the results on my online health insurance profile. This is what it is: 

Tissue transglutaminase measurement IgA 7 UNITS/ML
Immunoglobulin A measurement 111 MG/DL 7
Gliadin antibody, IgA measurement 11 UNITS 

When the lady called and told me I had Celiac I didn't really hear anything after that....

[GottaSki]

I searched for a little while and found the results on my online health insurance profile. This is what it is: 

Tissue transglutaminase measurement IgA 7 UNITS/ML

Immunoglobulin A measurement 111 MG/DL 7

Gliadin antibody, IgA measurement 11 UNITS 

When the lady called and told me I had Celiac I didn't really hear anything after that....

 

Were there ranges listed for each test or the words "positive" or "negative" after either the Tissue Transglutaminase or the Gliadin Antibody?

[bstefan]

Were there ranges listed for each test or the words "positive" or "negative" after either the Tissue Transglutaminase or the Gliadin Antibody?

There's a space for "normal range" but they're all blank. I don't see anything else on the form. 

 

I mean, I know I probably have it, what I don't get is that I've had vague, unexplained symptoms for years, so I was assuming there'd be a lot of damage and it would take a long time for it to heal. I cut down on gluten for the past few months but I cheated pretty often. *shrug*