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Negative tests, possible celiac?

Nick1

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Nick1 Newbie
Nick1
Posted

I had a celiac blood test around may 2015. I'm 20, male.

AGA  -        35       range 0-20

TTG IgA -     5      range 0-20

I believe total IgA was normal.

I have been gluten free, avoiding gluten best I could for about  2 weeks before this.

On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand.

I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage?

 

Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so.

 

Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms. 

Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice.

 

I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore.

Any opinions/ similar experiences would be appreciated.

 

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Nolev Newbie
Nolev
Posted

You could ask for the celiac panel again and see if being gluten-free has reduced the AGA levels. That would seem to indicate that being gluten-free helped. Some other people have said doctors have at least noted suspected celiac of one of the numbers came down after being gluten-free. Also you should ask to see your endoscopy results and see if elevated IELs were noted as that can indicate celiac even if gut damage was missed. 

Olim2005 Newbie
Olim2005
Posted

It's hard to say with diagnosing celiac through a test, it seems like there is no one test and many people test over and over again for years before finally receiving a test that says "positive."

It is possible that you have gluten intolerance or sensitivity and in the tests might now show anything.

Don't get frustrated, just be patient. Make sure you are seeing the right doctor. 

I was not diagnosed with celiac disease after several tests, but when I eat gluten more and more I get painful sensations in my legs and arms...literally pounding. I've fallen to the floor in pain. Along with headaches, brain fog, bleeding gums, hair fallen out in clumps, and bad nails. I quit gluten and it all went away. In my opinion I don't need a doctor to tell me eating gluten is a bad idea.

SLLRunner Enthusiast
SLLRunner
Posted
On 2/7/2016 at 11:37 AM, Nick1 said:
On 2/16/2016 at 8:28 PM, Olim2005 said:

It's hard to say with diagnosing celiac through a test, it seems like there is no one test and many people test over and over again for years before finally receiving a test that says "positive."

It is possible that you have gluten intolerance or sensitivity and in the tests might now show anything.

Don't get frustrated, just be patient. Make sure you are seeing the right doctor. 

I was not diagnosed with celiac disease after several tests, but when I eat gluten more and more I get painful sensations in my legs and arms...literally pounding. I've fallen to the floor in pain. Along with headaches, brain fog, bleeding gums, hair fallen out in clumps, and bad nails. I quit gluten and it all went away. In my opinion I don't need a doctor to tell me eating gluten is a bad idea.

I had a celiac blood test around may 2015. I'm 20, male.

AGA  -        35       range 0-20

TTG IgA -     5      range 0-20

I believe total IgA was normal.

I have been gluten free, avoiding gluten best I could for about  2 weeks before this.

On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand.

I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage?

 

Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so.

 

Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms. 

Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice.

 

I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore.

Any opinions/ similar experiences would be appreciated.

 

@Olim2005, your post resonates with me because I have reached a similar mindset.  A few weeks back when I did not eat gluten for a few days, I immediately began to feel better.  However, with an endoscope coming up this Friday I know I need to continue eating gluten. However, I plan on cutting out gluten because of my experience of feeling better without it.

 

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