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Does Anyone Get These Strange Symptoms?

Omck

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Omck Newbie
Omck
Posted

The day after a glutening it's mostly neurological effects like lethargy or just depression and the day after that I get gut wrenching pain above my belly button (like unbearable for hours), extreme thirst, tingling in hands and feet, feel very cold, dizzy and then my stomach feels bruised inside for a day or 2 after and finally it leaves with a migraine. The stomach ache is worse if I consume lots of starches like rice etc...as if my intestine is so damaged that it hurts to push it through. Does that make sense? Or does it sound like something else is going on?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. I also read your other post and you do seem to have what could be celiac related symptoms. It sounds like your doctor has ruled out at least a couple things like your gallbladder and pancreas. The bad news is that to be tested for celiac you do need to be eating gluten. It sounds like you have been gluten free or light for a while so you would need to challenge with gluten for some time before testing. 

  • 3 weeks later...
Celiac Ninja Enthusiast
Celiac Ninja
Posted

You DO NOT have to eat gluten to be tested for Celiac! Don't eat gluten.

 

A CELIAC PANEL is a DNA test which is accurate for doctor to determine if you are a celiac. Celiac disease is genetic therefore being on a gluten free or gluten diet doesn't not make a difference.

 

There is a long period of fasting for this test for people like us who suffer from malabsorbtion. It will take 4 larger test tubes of blood. So bring snacks after wards to eat immediately. I was tested positive for celiac disease on a gluten diet and off of gluten, your DNA will show it no matter what. It's always going to be there, unfortunately.

cyclinglady Grand Master
cyclinglady
Posted

Sorry, Ninja, but you are wrong!

Check out the University of Chicago's celiac website (they are one of the world's leading research and treatment centers) regarding testing:

Open Original Shared Link

There is a celiac blood panel which tests for antibodies and requires you to be consuming gluten every day for a period of about two months. If you are not consuming gluten the test results maybe invalid. Next, is a intestinal biopsy (via endoscopy) and the doctor should take at least six samples. But these two tests are not 100% accurate (but pretty close). To RULE OUT CELIAC COMPLETELY, there is a genetic test. Unfortunately, 30% of Americans have the genes for POTENTIALLY getting celiac disease. If you have the gene, but test negative on the blood panel and biopsy, a doctor might recommend going gluten-free (100%) for six months to see if symptoms improve.

To test for celiac disease, you must be consuming gluten for accurate results.

Testing for malabsorption (whether it is from SIBO, parasites, Crohn's etc.) has different requirements.

SMRI Collaborator
SMRI
Posted

You DO NOT have to eat gluten to be tested for Celiac! Don't eat gluten.

 

A CELIAC PANEL is a DNA test which is accurate for doctor to determine if you are a celiac. Celiac disease is genetic therefore being on a gluten free or gluten diet doesn't not make a difference.

 

There is a long period of fasting for this test for people like us who suffer from malabsorbtion. It will take 4 larger test tubes of blood. So bring snacks after wards to eat immediately. I was tested positive for celiac disease on a gluten diet and off of gluten, your DNA will show it no matter what. It's always going to be there, unfortunately.

 

I'm sorry but you are incorrect.  Yes, the GENE testing will be there, but the bloodwork will not if you are not eating gluten.  There is a huge difference!!

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