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How Accurate Are Celiac Blood Tests


dek38

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dek38 Rookie

Hi there,

   I have been suffering from unresolved health issues for almost a year now, during which time I have lost around 20 pounds in weight.  All other things have been happening to my body, stomach pain, strange BM (Undigested food/oil droplets), strange urination, fatigue, reflux that is not helped by PPI's, tooth and gum problems, aches and pains, creaking joints to name a few.

I have had an extensive work-up regarding tests/scan (Endoscopy, Colonoscopy, Abdominal and pelvic CT and ultrasounds, chest x-rays, urine analysis, loads of bloodwork plus other tests.

I visited a GI on Saturday, and he mentioned Celiac, he told me that the blood test was only 80% accurate and wants to do another Endoscopy and biopsy to check for Celiac.

As anyone been diagnosed with Celiac who had a negative blood test?  Also do the symptoms I have been having sound familiar?

Any help and advise would be greatly appreciated.


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frieze Community Regular

it is possible to get a - result, maybe even more often than your doc quotes.....get the repeat endo and go gluten free.

kareng Grand Master

I'm assuming you have not been eating gluten-free?

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Deaminated Marcus Apprentice

page 12 of this report says a DGP-IgG blood test is 99 to 100 percent accurate.

 

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dek38 Rookie

I am not sure what Celiac test they ran on me.  It was last may and it just said Celiac on the bloodwork sheet.  

I was eating at the time of the test and still am eating Gluten.

My plan is to try a Gluten free diet after my Biopsy, to see if I get better.  My symptoms are so varied and weird that it as to be something Autoimune (I think).  The reason i think the GI mentioned Celiac is because of my BM's (Undigested food, fat etc..)

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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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