Celiac Symptoms

[Mater Maker]

Hey guys,

My story.  I was tested for gluten sensitivity through a blood test 10 years ago.  They told me I was totally negative.  Since then serious IBD symptoms, muscle loss, hands and feet going numb.  I thought I was going to die.  I finally decided to go gluten free.  Unbelievable change.  I didn't sleep for a week!  Didn't need to, never in my life did I have so much energy.  Those of you with neurological symptoms keep it up!  I was losing my vision, and totally unemotional for my entire life.  Matter of fact, I have not cried or shed a tear in 20 years!  I thought it was normal.  NOT!  After going gluten free, the inflammation in my hands, elboys, and knees disappeared along with all the associated pain.  It went down so much I can see my veins again and have extra skin on my hands!  Wow, I can see my knee caps!  My emotions came raging back, and now I can't even watch a sad movie without tissues!  My eyeballs are much softer or not as firm and have thrown my glasses away.  Don't need them anymore, vision has completely came back.  Any thoughts of depression are history.  It has changed me so much that I am angry that I have endured such suffering for so long with negative testing.  Gluten had ravaged my body with no evidence except vitamin deficiencies.  I have come to a conclusion from research, and my body, that the inflammation is the problem from our bodies reaction to the gluten protein (same thing can happen with bee venum proteins).  This inflammation, in my humble opinion, is causing pressure on the brain making changes to emotions, personalities, and lenses within the eyes causing a fuzzy mind and fuzzy vision.  I believe that all mental institutions and hospitals should never serve any gluten products within their food, ever.  It is an inflammation beast.  The celiac testing is pee poor in my opinion.  We should be looking for inflammation markers verses specific gluten tied antibodies, if possible.  Please note that I am not tied to any medical profession, just my opinion!    

[cyclinglady]

5 hours ago, Mater Maker said:

Hey guys,

My story.  I was tested for gluten sensitivity through a blood test 10 years ago.  They told me I was totally negative.  Since then serious IBD symptoms, muscle loss, hands and feet going numb.  I thought I was going to die.  I finally decided to go gluten free.  Unbelievable change.  I didn't sleep for a week!  Didn't need to, never in my life did I have so much energy.  Those of you with neurological symptoms keep it up!  I was losing my vision, and totally unemotional for my entire life.  Matter of fact, I have not cried or shed a tear in 20 years!  I thought it was normal.  NOT!  After going gluten free, the inflammation in my hands, elboys, and knees disappeared along with all the associated pain.  It went down so much I can see my veins again and have extra skin on my hands!  Wow, I can see my knee caps!  My emotions came raging back, and now I can't even watch a sad movie without tissues!  My eyeballs are much softer or not as firm and have thrown my glasses away.  Don't need them anymore, vision has completely came back.  Any thoughts of depression are history.  It has changed me so much that I am angry that I have endured such suffering for so long with negative testing.  Gluten had ravaged my body with no evidence except vitamin deficiencies.  I have come to a conclusion from research, and my body, that the inflammation is the problem from our bodies reaction to the gluten protein (same thing can happen with bee venum proteins).  This inflammation, in my humble opinion, is causing pressure on the brain making changes to emotions, personalities, and lenses within the eyes causing a fuzzy mind and fuzzy vision.  I believe that all mental institutions and hospitals should never serve any gluten products within their food, ever.  It is an inflammation beast.  The celiac testing is pee poor in my opinion.  We should be looking for inflammation markers verses specific gluten tied antibodies, if possible.  Please note that I am not tied to any medical profession, just my opinion!    

So glad that you are feeling better!  It is a shame that you might have been misdiagnosed.  The full celiac panel should have been run.  Doctors should know that some patients are simply seronegative and in those cases, an endoscopy should be ordered.  If my doctor had only ordered the screening TTG, my own diagnosis would have been missed.  

This is directed to those who might be reading this thread, if your TTG is negative, ask for the rest of the panel.  The TTG catches most, but not all celiacs.  

Again, glad you are doing better!  

[JennieB63]

I've had neurological, emotional as well as many physical medical issues over my whole life (almost 55 years). My blood test for celiac disease came back that I didn't have it. Over the last almost 3 years now I've been accumulating random & sometimes severely debilitating neurological symptoms: Tardive Dyskinesia, extreme Oral-Lingual dysfunction with an inability to process most foods & get the processed through my digestive system without incident, daily brain-eye relay dysfunction causing blurry-deceeased-&-eventual blindness, sharp-shooting/constant nerve pains, numbness, neuropathy, muscle pain/spasticity/weakness/sudden release, etc, etc, etc... I also go through weeks at a time when there's nothing I can do to stay awake. I go for days at a time sleeping 18 to 22 hours in a 24 hour period & when I am "awake" I feel like I'm asleep. I can be in physical motion, but my brain can't compute thought or reading material (recipes or directions) into action. I'm always tired, I always have a headache, & I'm always in neurological & physical pain. I need help: type of Dr, names of tests, therapies, meds, ideas, etc...? Thank you.