False Negative?

[Jamie1763]

Ok so I believe I have Celiac disease....I have been very sick for years. Decided to try a glueten free diet on my own for a full week and felt immediatly better. Went to Gastro doc and had testing done.....results came back negative......my question is is a week of gluten-free dieting enought to create a false negative?

Put Gluten back in my diet and felt sick again right away....dont know what to think?

[Lisa]

I think you have a gluten intolerance, sensitivity or Celiac. Welcome.

[gossamer]

I also tested negative for Celiac. I'd like to know the rate for false negatives. This was from 2 blood tests, not sure which ones, but they sounded like the ones I came across while researching Celiac.

[Lisa]

  gossamer said:

I also tested negative for Celiac. I'd like to know the rate for false negatives. This was from 2 blood tests, not sure which ones, but they sounded like the ones I came across while researching Celiac.

This is the Serologic Panel to test Celiac Disease:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

[ravenwoodglass]

There are fairly high rates of false negatives. If I had waited for a positive test I would be dead by now, not an exaggeration. If you saw relief of symptoms on the diet you really do have your answer.

[Lisa]

https://www.celiac.com/articles/32/1/How-ac...ests/Page1.html

[samcarter]

My doctor only ordered the EMA test, which he said was the most specific for celiac disease. It came back negative, but I had a very positive response to the gluten free diet. I have since read that up to 20% of those with celiac disease have a negative EMA; they are called "seronegative" celiacs.

Personally, I believe that the "gold standard" of diagnosis should be the patient's response to a gluten free diet. Labs are dependent on the technicians' skill and interpretation; human error can sometimes come into play. Also, not everybody's body is going to react exactly the same to the disease.

[gfb1]

this is a more complicated question than it appears. im(ns)ho -- a 'negative' blood test means that you do not have DETECTABLE levels of antibodies to (gliadin, ema, ttg, etc,etc); this is extremely accurate. however, whether this means you do not have celiac disease is where there is difficulty in interpretation.

without going into human error on all that is involved in blood testing (which is not to say that it does not occur) and assuming that the correct PANEL of tests are complete (hmmm... assume??) ....

depending on the stage of the disease; you may not have sufficient intestinal damage to have detectable ab's to ema or ttg. this does not mean that you don't have a problem .. just that you are at the early stages; when antibody levels in your blood can be very variable (remember, just like a vaccine that requires boosters -- it may take 1-6 months to develop significant, sustained levels of antibodies in your blood stream). this effect is modulated by your diet (how often and how much gluten you consume), and your personal physiology -- dictated by BOTH genes and environment.

so, you can be sick; but, not yet have the damage required to have a positive blood test.

as others in this forum have said; some people are not willing to wait to get so sick that they test positive; and would rather stop eating gluten and stop being sick.

yet others want an iron-clad diagnosis -- which means don't change anything and wait to get sick enough to test positive.

the tone of the previous paragraph probably belies my preference... but, each to their own taste said the lady as she kissed the cat.

[Jamie1763]

Thanks for your help. Think I will stick to the diet cause I really do feel so much better. Quality of life is not the same when you are 27 and can only wear pants with elastic cause you belly swells so much throughout the day. LOL Its crazy!

[darkhorse]

  Jamie1763 said:

Thanks for your help. Think I will stick to the diet cause I really do feel so much better. Quality of life is not the same when you are 27 and can only wear pants with elastic cause you belly swells so much throughout the day. LOL Its crazy!

I so understand the pants issue, although for me it was also any shirt that would hide my bloated stomach so people would stop asking me if I was pregnant.

I am in the process of testing for Celiac. My PCP only ordered two tests (don't know which ones) that came back normal. I searched out a GI Dr. who specialized in Celiac and he just redid all my tests and did an endoscopy. I'm waiting for the results of all that as I type this. Were the other tests a false negative? Maybe. Will these tests show I have Celiac? Maybe not. But like you I had an incredible response to the diet and so regardless I am going to be gluten free (and dairy free) for the rest of my life.

There is such a thing as Non-Celiac Gluten Intolerance that some researchers think affects up to 30% of the population. You and I may be in that category. Just because your tests were negative doesn't mean you don't have a valid medical condition. Good luck!

[Amyleigh0007]

Add me to the false negative club. My doctor, after my bloodtest was negative, referred me to an allergist. She knew much more about Celiac and food intolerance. She diagnosed me with gluten intolerance but she said my bloodtest was most likely a false negative for Celiac. If you don't like the answer one doctor gives you, go to a different doctor. I am so glad I did.

[inskababy]

Both of my little boys tested negative but the fact that my oldest was anemic, positive genetically and had a positive dietary response and my youngest had a celiac crisis when he ate one noodle, had positive genetics and a positive dietary response was enough for our physician to declare them both positive for celiac disease.