Worth pursuing (again)?

[Ajackson]

Hi all, another pre-diagnosis thread here

Back in 2017 I had a bunch of tests, including a tTg test which came back ‘negative’ (I wasn’t given the exact number). I ended up diagnosed with Chronic Fatigue Syndrome.

Long story short the diagnosis was wrong, and I’ve now been diagnosed with severe B12, iron, Vit D and folate deficiency. I’m also querying a Vit K deficiency. I’ve been told I have malabsorption and I need tests to find out what is causing it.

I have a lot of GI symptoms which are plaguing my life but getting the tests and ruling them all out is taking it’s time.

I wondered if it’s even worth pursuing more testing for coeliac disease if I already have a negative test? However, I don’t feel like I had many GI symptoms back then.

For what it’s worth, I now have 

- almost constant wind

- will go 3-4 days without having a BM

- Bristol chart type 5 stools usually, greasy and orangey 

- nausea after eating

- sore throat and shortness of breath after eating

- abdominal pain on left hand side occasionally 

- barely able to tolerate eating most things anymore   A scourge for a comfort eater!

 

Would appreciate any advice or ideas. Thank you so much!

[trents]

Welcome to the forum, @Ajackson!

Many of your symptoms are classic for celiac disease. I would get retested but make sure you have been eating plenty of gluten for weeks ahead of the blood draw. Ask for these tests:

Total IGA

TTG-IGA

DGP-IGA

DGP-IGG

[Scott Adams]

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.