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Worth pursuing (again)?

Ajackson
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Ajackson Newbie
Ajackson
Posted

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!

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trents Grand Master
trents
Posted

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 Grand Master
Scott Adams
Posted

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.

 

 

 

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    • trents
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      By trents · Posted

      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
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    • knitty kitty
      symptoms.

      By knitty kitty · Posted

      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
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      symptoms.

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      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
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