Should I Get A Biopsy?

[RTH5]

I need help determining whether or not my blood test results for celiac are strongly indicitave enough that I should get a biopsy.

 

In Jan 2013 I had a test done and got:

Gliadin IgG 6.1 <20 neg

Gliadin IgA 5.0 <20 neg

TTG IgG 20.9 >9 pos

TTG IgA 0.8 <4 neg

 

My doctor simply told me I didn't have it. Had I known my TTG IgG level was so abnormal I would have probably gotten a biopsy at this point.

 

I had another test done last week, only real difference is that my TTG IgG level dropped to a 7.0 which is a weak posivite (6<, 6-9, >9) result.

 

I havent really adjusted my diet and eat gluten daily. Is a biopsy reccomended based on these results alone? My symptoms are basically mental fog/fatigue, less than optimal digestion, and possibly malabsorbtion as I have always had trouble gaining weight. I tried not eating gluten for a few weeks ~2 years ago and I remember feeling great. I'm leaning towards getting the biopsy to be sure and if negative possibly trying to self-diagnose gluten intolerance.

 

 

 

 

 

[Luanne]

I had a biopsy of the lining of my small intestines in 1999. The results were negative. I was then given the "We get a lot of false negatives" speech. This speech basically informed me that there were (at least in 1999 although I have no information about current biopsy tests) a lot of false negatives because the biopsy procedure could have gotten a sample from a healthy area of the small intestines, a place that had not yet been effected. Long story short, I was sent to a specialist in gastroenterology in 2009 to have the blood test for celiac. I was informed that the result was negative. Yet after finally determining I certainly had some rather severe reactions when I ate anything with gluten, I went gluten free. I also ended up going lactose free to get rid of the remaining gastrointestinal issues. However, just this week I was informed by this same doctor that he NEVER did the test. So basically I now have to reintroduce gluten to my diet and suffer through the reactions I have so that this doc can run the test he was supposed to have run 5 years ago. 

 

Based on my own experience at this point my suggestion would be to discuss with your doctor what the rate of false negatives is for the biopsy before you make a decision. Also, if you did not eat gluten for at least a week or two regularly prior to the blood test it would not be an accurate reflection. The blood test actually tests for the antibodies that are produced from the gluten you eat. Therefore, if you don't eat it (or don't eat enough) you will not have the antibodies or enough antibodies to exceed the cutoff level for the test. 

[cyclinglady]

I was "barely positive" on just one of the celiac disease blood tests, yet I had a Marsh Stage IIIB score on my biopsy (moderate to severe damage. I personally needed the biopsy to confirm my diagnosis. My husband had been gluten free for 13 years and I knew exactly what gluten free meant -- a life-long commitment!

[nvsmom]

No celiac disease tests are perfect.  The blood tests generally miss up to 25% of celiacs (except the older antigliadin antobodies- AGA) and the biopsy can miss up to 1 in 5 celiacs.  As a general rule, a positive in a celiac disease test means you have celiac disease.  I like to think of it like the pregnancy tests.  You may have a weak positive at 9 days late but another woman would have a strong positive, but the end result will be the same in 9 months.    KWIM?

 

Some people tend to just have a positive IgG based test (like your tTG IgG0, other will only have positive IgA based tests (like tTG IgA); some will only be positive in the tTG tests and others are just positive in the DGP tests.... Some are negative in all tests and have a really scary looking biopsy, and vice versa.  In the end though, it is is usually celiac disease.... about 95% of the time.

 

I don't know as much about the tTG IgG because doctors tend to focus on the tTG IgA test more.  Take a look at this article though, it shows that the specificity of the tTG IgG test for celiac disease is 95%. That means that only 5% of the time is a positive caused by something other than celiac disease - that is not much.  I know that a false negative tTG IgA test can be caused (about 5% of the time) by diabetes, thyroiditis, crohn's, colitis, chronic liver disease, or a serious infection.  If none of those apply to you then it is most likely celiac disease, and you happen to have one of those doctors who want all the stars and moons to align before he will give a firm diagnosis... there are quite a few like that it seems.

 

If you do decide on doing the biopsy, you'll need to resume eating gluten (1-2 slices of bread per day or equivalent) in the 2-4 weeks prior to testing; redoing blood tests would require 8-12 weeks of gluten.  Make sure the doctor takes 6 or more samples because celiac damage can be patchy and is easily missed.

 

If the biopsy is negative, and there is a 1 in 5 chance it will be if you are a celiac, I advise you to try the diet again anyways.  You probably have celiac disease and should be gluten-free.  If you decide to resume eating gluten, please retest every year or two... Based on what I have seen over the past few years, chances are your health will deteriorate enough for more positive tests so the doctor is comfortable giving a diagnosis.... Hopefully they'll come up with better testing methods some year soon.

 

Best wishes to you in whatever you decide to do.