Can Antibody Levels Change Over Time?

[tabdegner]

Just wondering how celiac antibodies present themselves. I am 30 years old and tested negative for all of the antibodies in the celiac panel several years ago. I am having rather severe symptoms of what I think could be celiac and am wondering if antibodies could have shown up in the last 3 years. Or do you just always have them from birth?

[Jestgar]

They show up when your body starts to treat gluten as an invader. Could be from birth, could be a trigger, could be a threshold effect.

[Katydid]

Yes, my daughter's test was negative when she tested 3-4 years ago; and she tested 'off the charts' positive just last month. She went through a severe career crisis and some financial difficulty which I assume was her trigger.

[nikki-uk]

  Katydid said:

Yes, my daughter's test was negative when she tested 3-4 years ago; and she tested 'off the charts' positive just last month. She went through a severe career crisis and some financial difficulty which I assume was her trigger.

Yes!! Absolutely!!

My son's first coeliac screen was negative - but a repeat blood test a year later was positive.

[tabdegner]

Thank you all. I'm finally feeling like I'm not going crazy. I originally had an appointment with my GI doctor April 9th, but I've been so sick they moved it up to this Tuesday, March 20th. I also had a negative biopsy a couple of years ago, but looking back, my symptoms were just starting. I am having more symptoms than I did back then and they're more severe. If you look at a list of celiac symptoms I have 80% of that list. I just don't know what else it could be -- especially since my mom and sister have celiac and there is autoimmune disease city in my family. NO ONE in my family has IBS, which is what I was labeled as. My mom was diagnosed with celiac at age 40 and her symptoms started out around age 30 and they were very similar to mine. She was SHOCKED that my first biopsy came back negative. I wish I could order my own lab work and tests and didn't have to wait for the doctor to do it. I like my GI, but he's going to think I'm crazy.

Thanks to everyone who writes on this forum. It's been a huge encouragment to me!!!

[tabdegner]

One more question -- How do I know that the lab my doctor sends the celiac bloodwork to is a "good" lab. Of course my doctor is going to say it's a good lab, but how can I be sure?

[Jestgar]

Well, that's a harder question to answer. I would think that a "bad" lab would still do a reasonable job, but the background would be higher - meaning that their "negative" level is higher and a borderline response might get lost in it.

If they do all the tests, and you are low, but still feel better when you don't eat gluten you might want to assume that it's a bad lab.

[happygirl]

For what its worth:

Dr. Green, a leading Celiac expert, lists which labs he thinks are good at performing these tests. LabCorp and Quest were NOT on this list.

from celiacdiseasecenter.columbia.edu:

"Q: I have heard that there are issues about which laboratories to use for serum antibodies testing. What are these issues? Should I be concerned?

Not all labs are created equal. There is a rapidly changing development of blood tests for celiac disease. It can take time for blood test results to find their right place in a physician's armamentarium. An example is the tissue transglutaminase antibody test. Results in clinical practice have not confirmed the initial reports out of research laboratories. Currently a panel of blood tests are necessary for diagnosis and the endomysial antibody remains the gold standard. A number of laboratories perform the celiac panel that includes the endomysial antibody. They include Prometheus Labs, IMMCO Diagnostics, Mayo Medical and the University of Maryland. Other laboratories substitute the tissue transglutaminase for the endomysial antibody test. Many different factors influence where blood tests are performed. These include physician preference and convenience to the physician and patient as well as HMOs having contracts that state the specific laboratory that patients need to ensure reimbursement. Not all physicians recognize these problems of inter-laboratory variation in laboratory results.'

[CMCM]

It's not only the lab...it's also the actual tests that your doctor orders. Both my son and I had blood tests...done before I had done any real reading on which specific tests must be ordered. My doctor was so clueless, when I asked him to order a celiac test he simply wrote "celac test panel" on his bloodwork form. The lab called him back asking which tests, and my doctor's nurse in turn called ME to find out. Ha! Since I didn't totally know at that point, I ended up with a very partial test which came up negative despite all my years of symptoms.

So I'd say be sure you know exactly which tests to order. I got this list from www.glutenfreedom.net, which is Danna Korn's site.

Blood: The blood test for celiac disease is looking for the following :

AGA (antigliadin) IgA

AGA (antigliadin) IgG

EMA (antiendomysial)

tTG (anti-tissue transglutaminase)

Total serum IgA

Genetics testing - DQ2, DQ8

Any doctors, nurses, physician's assistants, and other health care professionals can order these tests, but the lab that actually does the test is crucial. Make sure your lab is familiar with - and preferably specializes in - celiac disease. If they don't, there is a greater likelihood of false negatives.

_________

The bottom line here is that YOU...yes, YOU have to be extremely involved and proactive in trying to get any sort of diagnosis. Celiac disease AND the whole issue of gluten sensitivity is very poorly understood by the majority of doctors. I can't emphasize this enough. MOST DOCTORS DON'T KNOW!!! So you've got to learn!

_______

Another option is Enterolab testing, which you can handle yourself. They test a stool sample, not blood. Since gluten antibodies are produced in the intestines before they ever get into your blood, this is a logical method of testing according to Dr. Ken Fine, who runs Enterolab. You can also get gene tested through Enterolab and find out if you have a celiac gene. This knowledge of genes is useful and helpful. It's a strong indicator of possibilities. None of these things....not the stool test, not the blood test, not the gene test....none of them "diagnose" celiac disease. It appears that cannot be officially done unless you have an endoscopy that is positive for villi damage. HOWEVER....more and more doctors say that in most cases an endoscopy really is not required.

You look for pointers: Do you have predisposing genes? Do you have symptoms? Does a gluten free diet diminish or eliminate the symptoms? These are the factors which need to be examined more closely rather than obsessing on determining celiac disease by endoscopy alone.

Those of us with symptoms are somewhat fortunate because the symptoms make us take action and find out what is going on. There are far greater numbers of people with celiac/gluten issues who are what is called "silent celiacs". Due to lack of problematic symptoms they never suspect anything, they don't search, they don't find out, but nevertheless damage is going done internally and may eventually manifest as cancer or some other organ disease. They may never know that these other things might have been avoided if they had not eaten gluten.