Testing

So people ask me all the time what I think about testing for gluten sensitivity or Celiac Disease, (and for the record, I think distinguishing between gluten sensitivity and Celiac Disease is pretty meaningless, and that the medical profession is on the verge of realizing this.)  What is the best test, when should people get tested?  My views on this topic continue to change.  

I have always had reservations about recommending conventional testing, due to its invasive aspects.  Gastroenterologists have what they consider the, "Gold Standard."  for diagnosing Celiac Disease.  It is a positive blood test, AND a positive small intestine biopsy.  But I see problems with this approach.  First off, some people have already figured out that gluten makes them feel bad and have put themselves on a gluten free diet.  In order for these people to then test positive by conventional testing, they must currently be consuming gluten.  Peer-reviewed research suggests, that for some people, adding gluten back to their diet even briefly -- may increase their risk for other autoimmune diseases.  If they have already figured out that gluten is harming them, and are willing to go gluten free, then why bother with testing?  What is the point?   whose interests does such testing serve?  The second problem with this approach, is that I have now met more then a dozen people who were consuming gluten but who still failed to test positive by conventional testing -- some repeatedly over the course of many years, and were actually encouraged by their doctor to NOT get off gluten, only to get sicker over time and then finally -- after years of additional suffering and illnesses, getting a postive test result and finally being told that yes now they have celiac and should go gluten free for the rest of their life.

Last month, this scenario repeated itself with a friend of mine.  Here is what happened to her: 

Although she had had some intermittant GI symptoms previously, it was following her treatment with antibiotics, that things got really bad.   She started having some abdominal pain, constipation and vomiting. Then she began losing weight.  Next she developed ataxia.  She was hospitalized and examined by neurologists, and gastroenterologists, who ruled out celiac disease because blood tests and biopsies were negative.  She was obviously very sick, but every test kept coming back negative, so she kept getting examined, and being subjected to more and more tests.

Because I have heard similar stories from more then a dozen people now, who had all types of gastrointestinal and neurological symptoms for many years, while testing negative over and over for celiac disease, only to FINALLY get a positive test, five to twenty years later (and after they had suffered additional complications like IDDM, Sjogrens, lymphomas or had other problems that landed them in the hospital)  I kept suggesting to this friend's family,  that she try a gluten free diet anyway -- just to see if it would help.

But the friends's doctors, kept saying she most definately didn't have Celiac Disease, and that she would be crazy to even consider such a diet.  In fact, the GI doc, after his testing came back negative, said to the family, "She has more of a chance of being hit by a meteor while walking outside then of being diagnosed with CD."

Buoyed on by the information I was sending them, they pushed the doctors to reconsider the possibility of celiac...and big surprise, she finally turned out to be positive.

Now on a gluten free diet, and starting to recover, my friend wanted to make sure I understood that these doctors were good, conscientious doctors, going out of their way to provide the best care that they could.  The problem is the whole system is still very caught in the "old"paradigm, which teaches them that:  1) Celiac Disease is rare.  2) The Gold Standard is the best way to test for it.  3) A gluten free diet is so horrific that absolutely no one should ever go on it, unless they meet the gold standard.

I believe that all three of these ideas are wrong.

First off, I think the notion of Celiac Disease as something separate from Gluten sensitivity is going to turn out to be an erroneous way to look at this.  The way I see it, Gluten sensitivity IS the problem.  A very small number of people who are gluten sensitive will show antibodies in the blood and/or damage to the small intestine, but many more people will never show these things even though their brain and other tissues/organs may be adversly affected when they consume gluten.  Finally, a gluten free diet is not only easy to do, once you learn the ropes, if done properly, (and instead of subsituting packaged "gluten free" foods for your bread and pasta, you replace gluten, meat and dairy with more fruits and vegetables) will actually be beneficial for everyone -- even those who have no reaction to gluten, since fruits and vegetables pack more nutrients per calorie consumed then grain based foods do.  Finally, it is a fact, that the incidence of celiac disease IS increasing -- no one really knows why yet, but it is getting more prevalent.

Until recently, I encouraged everyone concerned about this issue to get testing from
Enterolab --  Their test uses a stool sample -- so is non-invasive, and does catch far more cases then conventional testing.  But they point out that people who have a genetic condition known as IgA Deficiency, will test negative on their test, (even if they are having problems with gluten) and it appears that IgA Deficiency is more prevalent in those with Celiac Disease.  Furthermore, I know two people, who had troubling symptoms that might possibly be related to gluten, who went gluten free AND did Enterolab's test at the same time.  They actually thought that they might be noticing some improvement in their symptoms when their Enterolab test results came back negative.   So they abandoned the gluten free diet. 

So here is my new view on testing.

If a person has symptoms, which they are wondering if gluten might be causing them, I think they should just go on a 100% gluten free diet.  They should follow this diet very carefully for at least 3 months -- but preferably 6 months or even a year for some conditions.  If they see improvement, they have their answer.

In the case of someone who has no symptoms, but may have a blood relative who is gluten sensitive and wants to know if they are gluten sensitive, they might be a good candidate for the Enterolab test.  There are some people who have no obvious symptoms, but produce antibodies to gluten, and may be at risk of long term problems if they continue to consume it.  Testing makes sense for these people.

Some people MUST have a lab test result in hand before they will consider making a change to a gluten free diet, so for those people I also recommend testing.  But to me the real gold standard, is to try a gluten free diet and see how you feel.

FYI -- I am not a doctor.  Everything here is just my opinion and is provided for educational purposes.  You are responsible for your own health, and the consequences of whatever health care decisions you make.