Celiac or not Celiac

[Guy Berresford]

Hi,

When I eat bread it feels like I've just drunk some concrete.
I start to feel tired and heavy and just wrong. Shortly after I get bloated, and distended as if I'm heavily pregnant with twins.

The I get a headache and nausea, tingling lips and hands and aching knees. 
Some times my feet heat up or i get flu symptoms like burning,eyes, nose sinuses, hot flushes and sweats, runny nose and stiff neck.

When i try and sleep I have a rapid heart rate and insomnia. My skin starts to itch all over and then for two weeks after wards i'm lethargic and have low moods and brainfog.

However both the blood test and biopsy came back negative for celiac.
Is it more likely that I have NCGS rather than celiac, or that both my tests are a false negative?
Can I eat small amounts of wheat such as those amounts in sauces, or should it be completely avoided?
Is this reaction something that can heal overtime or am I stuck with it for life?

Thanks for any advice, I apologies I've asked questions that may have previously been asked by others.
 
 

[kareng]

1 hour ago, Guy Berresford said:

Hi,

When I eat bread it feels like I've just drunk some concrete.
I start to feel tired and heavy and just wrong. Shortly after I get bloated, and distended as if I'm heavily pregnant with twins.

The I get a headache and nausea, tingling lips and hands and aching knees. 
Some times my feet heat up or i get flu symptoms like burning,eyes, nose sinuses, hot flushes and sweats, runny nose and stiff neck.

When i try and sleep I have a rapid heart rate and insomnia. My skin starts to itch all over and then for two weeks after wards i'm lethargic and have low moods and brainfog.

However both the blood test and biopsy came back negative for celiac.
Is it more likely that I have NCGS rather than celiac, or that both my tests are a false negative?
Can I eat small amounts of wheat such as those amounts in sauces, or should it be completely avoided?
Is this reaction something that can heal overtime or am I stuck with it for life?

Thanks for any advice, I apologies I've asked questions that may have previously been asked by others.
 
 

Were you eating gluten free when you were tested for Celiac?

[Guy Berresford]

The doctors told me to eat gluten again prior to being tested so i went back on bread for  two weeks before the tests and came off it again straight afterwards.  

[kareng]

17 minutes ago, Guy Berresford said:

The doctors told me to eat gluten again prior to being tested so i went back on bread for  two weeks before the tests and came off it again straight afterwards.  

That might not have been enough time to get good results.  It takes a while for the antibodies to build up enough to show in the blood.  The biopsy can miss the parts that are bad. 

 

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[GFinDC]

Right, the gluten challenge is 12 weeks for the blood tests, 2 weeks for the endoscopy.  So you didn't eat gluten long enough for the antibodies to build up in your bloodstream.  The blood tests were invalid and can't be relied on.  I don't have NCGS myself, but the symptoms can be similar to celiac disease.  The difference is there is on damage to the gut in NCGS.

There is also a gene test they can do for celiac disease.  The gene test doesn't prove you have celiac disease, just that you can develop it.  So it kind of puts you in the pool of possibles.   There aren't any tests for NCGS because they don't have any clear idea what causes it.  One theory is that it is caused by a reaction to FODMAPS in foods.

My own guess is that you have celiac disease though, based on your symptoms.  I am not a doctor though.

Edited August 5, 2018 by GFinDC