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How Common Are False Negatives?

Misty073

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Misty073 Newbie
Misty073
Posted

I have been "ill" for years. I am constantly seeing the dr for something, infact I don't think my current dr likes me much.

I have been fatigued pretty much my whole life but over the years been diagnosed with anxiety and depression (depression because of the fatigue, now I'm on meds and just happy tired) I have Carple tunnel symptoms bad but my tests came back as very minor, vibration makes my hands completely numb, printing or painting (anything that I have to hold like that causes my hands to cramp) I have bad knees as well (I'm almost 40 but this has been on going for years)

I have diarrhea constantly (not very often I have normal bms...sorry tmi) always have a rumbly tummy and bad gas. I had my gallbladder out 7 years ago and always thought that was the reason for the issues.

Over the last year I have gotten canker sores on my tongue pretty much full time, I just healed from my worst one yet...looked like a large crater on my tongue and hurt so bad. I also get cracks in the corner of my mouth and the sides of my tongue get sore and the tip feels like it is burnt. A few months ago I went to a walk in clinic (I try not to see my dr) because my toes were going numb, he tested my B12 and it came back at 162 where 150 is deficient...my dr said its low but not enough to cause symptoms. I went to a naturalpath for b12 shots (with other vitamins mixed in) and my tongue cleared up and I started to feel better. But when I stopped going for the visits (no coverage at the moment) everything came back. She also said my iron was low.

I recently had some blood work done that came back "fine" as the dr said...so I asked about celiacs and the dr reordered a B12 test to compare...2 blood tests for celiacs (can't remember which ones) and a different type of iron test (first test came back fine).

I am worried about a false negative result as I have been doing a lot of reading and apparently lots of people get false negs??? I asked the dr u saw (not my dr) who says the blood tests are 95% accurate?? Obviously I don't want celiacs but in a way I want a positive result so all this can finally make sense (if that makes sense)

So confused...

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kareng Grand Master
kareng
Posted

They are quite accurate. But it will depend on the tests that were ordered. For example, about 5% of people don't make enough of the type of antibody that is usually tested . They should do a total serum IGA to see if the TTG IGA test is the right one for you. Get a copy of your results.

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Misty073 Newbie
Misty073
Posted
  • Author

They are quite accurate. But it will depend on the tests that were ordered. For example, about 5% of people don't make enough of the type of antibody that is usually tested . They should do a total serum IGA to see if the TTG IGA test is the right one for you. Get a copy of your results.

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I think that was the other test he ran, to see if I make the antibody.

MarionG Rookie
MarionG
Posted

I've heard of a lot of people who get false negatives on their blood tests. In my experience with Drs. You have to just be very firm. I've had 5 different Drs. over 11 years tell me it was all in my head and try to give me antidepressants. Unfortunately your experience is very common. Try to get a new Dr. Just keep going to different ones until you find someone who actually believes you and will test you correctly. In the meantime do as much research as you can. That way you can push for the right tests. I know how frustrating it can be, keep pushing for answers don't give up. If you don't need a formal diagnosis you could just follow the celiac diet and see if the symptoms go away. Some people are ok with that. Sorry your going through all that, I hope you come to a resolution soon!

nvsmom Community Regular
nvsmom
Posted

False negatives aren't common, but they do happen.  This report on page 12 shows the sensitivity of the various tests - how many tests have a positive result if 100 celiacs are tested.  Open Original Shared Link

 

As another said, about 5% of celiacs are too low in IgA for IgA tests to be accurate. That will affect the tests using IgA.

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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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