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.

About 60% of Americans have the genes that predispose them to becoming gluten sensitive.

Recent research (By Dr. Kenneth Fine) suggests that about half of these people have detectable immunological reactions to gluten, and the majority will NEVER meet the classic definition of celiac disease -- even though gluten IS triggering an autoimmune reaction in their body which may affect many organs or tissues other then the small intestine.

Recipe for these GFCF Penguins is in my book!

Are You Educated on Genetic Engineering?

Biotechnology is the new frontier. Yet, few people in our country right now, have any idea, just how dramatically Genetic Engineering is poised to change our lives. Proponents believe biotech holds the possibility of doing some great things, and I believe it might have some great applications, but there is also evidence that this technology if misapplied or allowed out of the lab/hospital setting, could have significant and even disasterous consequences for our health, and well being. The problem is, there is so much money to be made right now in biotech, and so little required in terms of safety testing, and no requirement for product labeling, that human hubris and capitalism being what they are, I think we are headed for some difficult lessons -- before appropriate safeguards are put in place. I believe at the very least, people should have the option of taking the risk of exposure or avoiding this risk if they so choose. (But that is currently NOT the case.) Please watch the video below (it is less then 20 minutes long) of how one mother (who just happened to be a wall street food analyst) woke up to this issue. Then go explore this site: Seeds of Deception to learn the facts so that you can protect yourself and your family.

Should you avoid Genetically Engineered Foods?

Check this out -- Vitamin D

Many of us probably have suboptimal levels of vitamin D, which can be a contributing factor to the development of many of the related conditions and symptoms more common in those who are gluten sensitive. Watch this video -- It's worth the investment of thirty minutes of your time. I should mention however, that while some authorities consider D3 superior to D2, there is good data that if D2 is taken in reasonable amounts (like 1000-2000 iu daily -- not the huge megadoses that some doctors recommend taking on a weekly basis) that D2 is very effective. (And for someone like me who prefers to minimize any possible exposure to prions which may contaminate animal derrived substances -- of which D3 is one -- this is very good news.)

Dietition Jack Norris has great info on Vitamin D here. Be sure also to read Vitamin D Researcher/MD Michael Hollick's book, The UV Advantage.

Recurrent Abdominal Pain (R.A.P.)

Pre Celiac Disease?

As soon as my daughter could talk she began to report to me that her tummy almost always hurt. Although it didn't become really bad until she was about 8 years old -- this I believe was due to long term exclusive breastfeeding. Throughout her early years, I raised the issue of her chronic abdominal pain with our family doctor on many occaisions, and he would assure me that nothing was wrong, that RAP was very common in children and usually due to emotional issues. When it increased in severity we went to see another doctor -- he thought she might have ulcers -- but that test came back negative and the other tests he ran showed that she was in good health. He thought she was fine too. Eventually I learned about gluten from a friend and well you can read the rest of this story by clicking on the links to articles at the top of this page. However the main point I wish to make here is this: In looking back, it is clear to me now that my daughter -- probably from birth was reacting to gluten. Her fussiness, her greenish stools, her starting to nurse and then pulling off and crying, and then years of tummy aches -- all suggest that gluten was causing her issues from the very beginning. On many occaisions I suspected that wheat might be affecting her -- but its withdrawal never entirely resolved her issues. Now of course I know that gluten is not just in wheat, but also barley, spelt, rye, oats and lots of things made from these. RAP is very common and most the time, it's cause is never found. I would urge anyone who's child is suffering, to explore the possibility that gluten might be the cause of their distress.

Why is Gluten so Problematic?

August of 2009 Scientific American published this very in-depth article on Celiac Disease:


With this quote in it:

"Gluten, however, has a peculiar structure: it is unusually rich in the amino acids glutamine and proline. This property renders part of the molecule impervious to our protein-chopping machinery, leaving small protein fragments, or peptides, intact."

However one thing the article left unanswered. I want to know what is the scientific basis for so many doctors believing that antigliadin antibodies are non-specific and are not (by themselves) indicitive of a problem? The article said that anti-gliadin antibodies are NOT considered specific to celiac disease because they are often found in people who do not have celiac disease. But given that it has only been about 65 years that the medical profession has even made the connection between celiac disease and gluten, and only SIX years since the medical profession realized the incidence was at least TEN TIMES more common then they previously thought....why are they still assuming that anti-gliadin antibodies are nonspecific?

Could it be that all those people who do have antigliadin antibodies in their systems, but don't show damage to the villi are still having a dangerous reaction to gluten? Should the definition of celiac disease be altered...or else dropped altogether and simply be part of a condition called gluten sensitivity which may or may not create visible damage to the villi of the small intestine?

Taxonomic Relationship Amongst Grains

Taxonomic Relationship Amongst Grains
Only the Hordeae tribe make their own gluten -- but oats can absorb gluten if they are grown or stored near gluten containing grains.