Maybe celiac, maybe just ncgs?

[Neat1]

Hey there,

I had a blood test for celiac (was eating copious amounts of wheat) that came back negative, but I’m still having problems with digestion that are worse when eating wheat. While I have overlap with some symptoms similar to SIBO or dysbiosis there are some that still make me think it’s celiac. After ingesting gluten I have terrible neck and shoulder pain. This is repeatable; I thought I slept on it wrong so after pain abated I ate gluten again, bam, pain returned. Being not specifically digestive this is indicative of an autoimmune response, right? 
for what it’s worth I’ve been to a gastroenterologist but after testing for celiac and receiving a negative result they wrote me a prescription for Linzess and told me follow up with an APRN. No further testing of any kind.  
Thank you for reading my post and I look forward to any insights others are able to share from their experiences

[trents]

Welcome to the forum, @Neat1! Can you list the celiac blood antibody tests that were done? Another possibility is that you are IGA deficient which can create false negatives on IGA-based antibody tests. There is a blood test to check for that, commonly known as "total IGA" but many docs don't know to run it.

[Neat1]

Hey there! The test was Tissue Transglutaminase Ab, IgA and result was <1.

 

[trents]

Before you conclude you don't have celiac disease, you should request a more complete celiac blood antibody panel. You got the bare minimum blood test.

You should ask for:

Total IGA

tTG-IGA

DGP-IGA

DGP-IGG

TTG-IGG

You need to have been eating generous amounts of gluten for weeks beforehand but sounds like you are aware of that. Here is a primer that outlines the different kinds of blood antibody tests that can be run when checking for celiac disease:

 

[Neat1]

I don’t love the idea of eating a boatload of gluten 😂 but I also probably knew more testing was going to be required. I don’t see a new GI doc until December, but I might send my pcm a message and ask if they can order any/all of those. 

[trents]

10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.

Edited 1 hour ago by trents

[trents]

As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.