October 7, 2011
In last week newsletter I mistakenly said that the only way to know if you are gluten intolerant is to try a gluten free diet. My wonderful newsletter readers wrote back to let me know that I was wrong. Here’s the question that I was responding to, followed by my readers’ responses.
Q: My doctor did a blood test and ruled out celiac. But my stomach issues continue. I am wondering if I have a gluten intolerance. Could you tell me more about this? Can they do a test to find out? This is all new to me and I am very overwhelmed and just want to feel better soon! I am thinking of getting your kit and trying no gluten to see if it helps. How long would I need to do it for to tell whether it works? ~Patti
There were several recommendations by my readers. The most popular by far was to have testing done by Enterolab. Following is one of the many emails recommending Enterolab.
I thought I’d chime in on the question from a reader about whether there is a way to test for gluten intolerance. You said there is not, except to do a gluten-free trial. But there IS a test, and I recently had it at the advice of a nutritionist and hormone expert, and I tested VERY positive for gluten intolerance.
I have no stomach/intestinal symptoms and have never felt bad eating gluten, but I do have autoimmune thyroid disease (Hashimoto’s Disease) and low bone density, both of which can be caused by gluten intolerance.
Lindsey Berkson, the nutritionist/hormone expert I’m seeing, recommended that I have the anti-gliadin IgA antibody test for gluten sensitivity developed by Enterolab. (Danna Korn says in her book “Living Gluten Free for Dummies” in the section about testing for celiac and gluten sensitivity that Enterolab is the only lab in the U.S. that does a stool test for celiac and gluten sensitivity).
Enterolab offers quite a few different types of tests for gluten sensitivity and the genes for celiac, as well as food allergies. I had the test I mentioned above, which costs $99 ($120 total, including shipping the test materials to me and the return UPS overnight shipping fee).
It’s a simple stool test, and it tests for the antibodies to gluten that are present in stool if someone is sensitive to it and is still eating gluten. You do the test while eating your normal diet that contains gluten. The doctor who runs the lab and patented the tests says on the website that the test is much more sensitive than a blood test because the anti-gliadin antibodies are present in stool before they can be detected in blood.
A normal level (negative result) is 10 units or less of the anti-gliadin IgA antibody. My result was 71. I called and talked to a nurse at the lab after I got my results because I was so shocked. I said “but I don’t feel bad when I eat gluten! Your lab must have made a mistake!” She replied that I am one of the many “asymptomatic” folks, but that continuing to eat gluten would damage my body, and that it might be the cause of my thyroid and low bone density problems. She said that most of their patients who test positive are in the range of 40 to 80, so my result was very high. But she told me that that is actually a good thing because it indicates that my immune system is still in good shape and is really pumping out the antibodies because it sees gluten as an invader, much like a virus.
You do not need a doctor’s prescription to take any of Enterolab’s tests. You can order the test(s) and pay on their website. One of the founder’s goals is to let people take their health into their own hands. A positive result of this is that the test results will not be in patients’ medical records to possibly be used against them in the future by insurance companies.
The lab site has a wealth of information on it about gluten sensitivity and celiac, and information about all of the tests. The website is:
Once I looked at the website, I realized that I had looked at these tests in considering whether to do any additional testing for celiac/gluten sensitivity for our kids. It’s something that I need to revisit since John and I have not had any follow-up testing to make sure our antibodies are down, and the kids will need periodic testing due to our family history.
I found the Enterolab FAQ to be very helpful in explaining gluten sensitivity and why this stool test will detect a problem before a blood test. Spend some time reading over this.
Another reader wrote in with a great insight as to why having actual test results can be more helpful than simply trying a gluten free diet.
Maybe you’re not aware, but the gluten intolerance stool test that is given by Enterolab is considered VERY accurate. Dr Lieberman refers to it in her book “The Gluten Connection”.
I, personally, could have tried the GF diet, but just knew myself too well. If I’d not seen the results in black and white, I just don’t know that I would have been as careful or committed as I am. I ( as well as my husband who also tested positive ) have been 100 % GF for the last year.But knowing without any question that the damage was ongoing has made a difficult transition pretty much a no brainer.
My daughter and 1 of her 4 children just tested positive…( only 2 have been tested so far, but the other 2 will be tested next. She resisted it for the full year…didn’t really want to know, but again, once she saw black and white test results, the decision was an easy one.
According to Dr Lieberman, one of the biggest misconceptions that doctors (and consumers) are laboring under is that gluten intolerance is not as serious as full blown celiac. Not true…as those of us whose health has improved sooo much can attest.
Just thought you might like to know about the options for those who are convinced there is a problem…even when the docs blow it off..or say that unless you’re celiac, you’ve not really got an issue.
Other readers suggested having an ALCAT test, an applied kiniesology test, or having a small intestine biopsy done (which is the definitive test of celiac).
Weigh in with your opinions in the comments!
Categories: Gluten Free Diet