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

False Negative Results?


Oneiros

Recommended Posts

Oneiros Newbie

After getting negative blood test results today I am kind of happy, but also wonder what is going on now. I stopped eating gluten last monday, and on wednesday i think had something with minute amounts of gluten in it and felt a little ill. Before this, every day for about a month straight, i had bad pains in my lower abdomen just to the left of my belly button, and diarrhea pretty much every day as well. blood tests were taken last thursday. after being completely gluten free since then my digestive system is happier than it has been in a long time - no pains or diarrhea.

I guess my questions are, is it possible to get false results after not eating gluten for 3 days before the test? Or just false negative results in general? At the time of going gluten free I didnt understand much about it (just thought I'd give it a try) so it would be unlikely that I've convinced myself that that is the problem and the pain relief follows.

The 3 blood results were 5 (<20), 5 (<20), and 4 (<4) but I can't remember which ones those were. Does anyone have any suggestions or advice? Thanks. Luke


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



Celiac.com Sponsor (A8-M):



beachbirdie Contributor

After getting negative blood test results today I am kind of happy, but also wonder what is going on now. I stopped eating gluten last monday, and on wednesday i think had something with minute amounts of gluten in it and felt a little ill. Before this, every day for about a month straight, i had bad pains in my lower abdomen just to the left of my belly button, and diarrhea pretty much every day as well. blood tests were taken last thursday. after being completely gluten free since then my digestive system is happier than it has been in a long time - no pains or diarrhea.

I guess my questions are, is it possible to get false results after not eating gluten for 3 days before the test? Or just false negative results in general? At the time of going gluten free I didnt understand much about it (just thought I'd give it a try) so it would be unlikely that I've convinced myself that that is the problem and the pain relief follows.

The 3 blood results were 5 (<20), 5 (<20), and 4 (<4) but I can't remember which ones those were. Does anyone have any suggestions or advice? Thanks. Luke

It would be good to know which tests you had done. Especially the one that gives a range of <4, because you are AT 4. That might be meaningful, depending on which test it is.

If gluten is making you ill, that is a huge answer for you. You may be in the early stages of celiac, and not suffering damage yet.

False negatives are common, somewhere in the range of 20-30%.

Oneiros Newbie

It would be good to know which tests you had done. Especially the one that gives a range of <4, because you are AT 4. That might be meaningful, depending on which test it is.

If gluten is making you ill, that is a huge answer for you. You may be in the early stages of celiac, and not suffering damage yet.

False negatives are common, somewhere in the range of 20-30%.

Wow that is a high false negative rate. The results I have are:

Anti Gliadin IgA < 5 U/mL (<20)

Anti Gliadin IgG < 5 U/mL (<20)

Anti Tissue Transglutaminase IgA < 4 U/mL (<4)

there were other things they tested too but i don't have the results. Does this suggest anything? I had been on a gluten free diet for a couple of days before the tests...

Thanks. Luke

beachbirdie Contributor

Wow that is a high false negative rate. The results I have are:

Anti Gliadin IgA < 5 U/mL (<20)

Anti Gliadin IgG < 5 U/mL (<20)

Anti Tissue Transglutaminase IgA < 4 U/mL (<4)

there were other things they tested too but i don't have the results. Does this suggest anything? I had been on a gluten free diet for a couple of days before the tests...

Thanks. Luke

Oh...I see...you were not AT 4 on the TtG, you were below 4. Yeah, you are negative on the tests they did. However, they seem to have left out the total serum IgA. That is important since 2 of the 3 tests are IgA tests. If you are IgA deficient, those other two IgA tests would be invalid.

A couple of days (if only two or three) won't make a difference on these tests.

It is always a good idea to get the paper results of all your labs, if you can get them and find out what else was tested it would tell you a bit about what your doc is thinking. :)

Also, even with negative blood work, you seem to have gotten a good result with your gluten-free eating. Give it a couple of months and see if it makes big changes for you (unless you are going to pursue further testing!). If you are better after that long, you probably have issues with gluten whether celiac or not. A lot of people do have non-celiac gluten intolerance. If you don't feel better, of course you'll want to keep looking for what might be the cause. In the absence of other disease process, you could have other food intolerances and an elimination diet would tell you that.

Oneiros Newbie

Oh...I see...you were not AT 4 on the TtG, you were below 4. Yeah, you are negative on the tests they did. However, they seem to have left out the total serum IgA. That is important since 2 of the 3 tests are IgA tests. If you are IgA deficient, those other two IgA tests would be invalid.

A couple of days (if only two or three) won't make a difference on these tests.

It is always a good idea to get the paper results of all your labs, if you can get them and find out what else was tested it would tell you a bit about what your doc is thinking. :)

Also, even with negative blood work, you seem to have gotten a good result with your gluten-free eating. Give it a couple of months and see if it makes big changes for you (unless you are going to pursue further testing!). If you are better after that long, you probably have issues with gluten whether celiac or not. A lot of people do have non-celiac gluten intolerance. If you don't feel better, of course you'll want to keep looking for what might be the cause. In the absence of other disease process, you could have other food intolerances and an elimination diet would tell you that.

Well a gluten-free diet eliminated my symptoms within a day or two so the negative test results seemed strange. I will continue on it and try gluten in a few months, but even yesterday I seem to have gotten sick from some cross contamination at subway.

I hate the whole clinical process so I'd rather just figure this out with trial and error myself.

Thanks for your advice :)

squirmingitch Veteran

And that's exactly why there are so many self dx'd celiacs here. Besides the fact that sooooo many wer misdiagnosed for sooooo long sooooo many times.

This is truly one of those times when you could turn the old phrase & say, "Patient, heal thyself". And we do.

Now you need to start learning how to keep from getting cc'd like you did & learn all the ins & outs of this diet. Read. Read & read on this board & you will learn much. Ask questions anytime.

Welcome to the board!smile.gif

MitziG Enthusiast

Likely you are non-celiac gluten intolerant. No tests are available other than the most reliable one ever- how does gluten make you feel? ;) that is all the answer you need.

Nobody really knows what exactly happens that makes so many respond badly to gluten, yet not develop celiac. But NOT having an autoimmune disorder is a GOOD thing, so don't be dissappointed with not having celiac.

Stick with the diet. Your body will tell you more than any MD can.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748

    AngieMcK24
    Newest Member
    AngieMcK24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.