Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Common Are False Negatives?

Misty073

Recommended Posts

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Open Original Shared Link

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.

Open Original Shared Link

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.