FCIWYPSC

Bring back science 1.0 September 19, 2012

Given my recent induction into the world of celiacs disease (CD), I’ve been spending a lot of time researching it.  I’ve been trying to spare all my blog readers the gory details, but I hope you’ll realize that this isn’t a normal post about the trials and tribulations of one dealing with CD.  In particular, most of my time is spent looking for the gluten status of foods.  (I thought I was happy to have an iPhone before, but now it’s become a necessity in the grocery store!)  One night, while looking up some information, one of the hits ended up being to the post, “Celiac: The Trendy Disease For Rich White People.”  The post is located on the site Science 2.0, which seems to have both original content as well as aggregated articles.

I was very disturbed by the post. I was even more disturbed when I found out that the author, Hank Campbell, was the founder of Science 2.0.

I’m not at all impressed with his science…at least on this topic.  If you don’t want to read through the post, I can summarize by saying that Mr. Campbell claims that the only people who have a valid reason to go on a gluten-free diet are those who have a diagnosis of Celiac’s disease.  His justification for this is a single study showing that a gluten-free diet doesn’t result in weight loss for most people.  Everyone else who is doing it is following a fad, and their non-scientific thinking means they need to be lumped in with groups like anti-vaxers.  GF is the trendy thing to do, and following a GF diet when it’s not medically indicated is just the trendy thing for rich white folks to do.

The whole article is a rant that only displays the ignorance Mr. Campbell has on this particular topic.  First, he throws out the number that 97% of people who have CD probably don’t know they have it, mocking it.  What he’s mocking are statistics from the University of Chicago Celiac Disease Center.  The document in the previous link points out that there is both a huge correlation between autoimmune diseases in general and celiac disease in particular.  It also points out that the standard symptom of CD (GI issues) is only present in about 1/3 of those who are diagnosed with CD.  On average, it can take several years from the onset of symptoms before one actually gets a diagnosis.  (I can vouch for that given I have had symptoms for most of the past three decades and had an incorrect diagnosis of fibromyalgia when I was a teenager.  The fibromyagia seemed to go away after a couple years on a low-carb diet, much to the puzzlement of several doctors.  Apparently this particular misdiagnosis occurs in about 10% of CD patients.)

There are several non-GI symptoms that can indicate CD, but most physicians are unaware of them (for instance, anxiety).  There is also the problem that people with undiagnosed CD are likely to develop a range of autoimmune disorders, such as Hashimoto’s diease, Lupus, and Rheumatoid Arthritis.  (In fact, someone I know was recently told by their rheumatologist that they may want to try a GF diet to see if it helped with their RA symptoms.)  In most cases, these other disorders are discovered BEFORE it is determined that a patient may have CD…not the other way around.

Getting out of the realm of CD, there is also a lot of work being done on non-CD gluten sensitivity.  There are a number of people who apparently have a sensitivity or intolerance to gluten without developing CD.  They estimate there are about 6 million people in the US with gluten sensitivity.  Unfortunately, there is no biological marker for it.  The only way one can tell if the patient with symptoms goes on a GF diet, although there are studies underway to find quantitative tests showing an immune response.

So let’s go back to Mr. Campell’s “discussion” of the topic.  With a little work, he could have learned that his whole “when I was a kid, CD was a serious disease” may have been true.  Although he was implying it is overdiagnosed, it turns out that levels of CD are 4 times what they were 50 years ago.  There seems to be an uptick in diagnosis not only because of better diagnostic tools but because something has changed in American’s diets.  (One speculation mentioned in the Wall Street Journal article is that wheat has been bred to provide greater concentrations of protein.)  However, one can also look at the information above (and in the links) and easily conclude that CD is also incredibly difficult to diagnose.  There are over 100 symptoms linked to gluten intake, and as I mentioned before, often the associated autoimmune diseases will be diagnosed before CD is found.

Mr. Campbell then goes on to ridicule people who try a GF diet without a diagnosis and then claim it improves how they feel.  Let’s see…how does one diagnose non-CD gluten sensitivity?  At this point, one goes on a GF diet to see if they feel better, then they tell their doctor.  As far as I can tell, people are trying to pay attention to their diet and connecting it to how it makes them feel rather than waiting for them to have their doctor tell them to do something.  Imagine that…people taking initiative to improve their health.  Given non-CD gluten sensitivity may occur in as many as 1 in 20 individuals, as well as the diverse number of symptoms linked to gluten ingestion, likelihood of such a diet being successful in helping someone to feel better are actually pretty high.

Finally, Mr. Campbell attempts to make the argument that all this ‘fad stuff’ is hurting those of us who have CD.  As you may have noticed in the approximately 450 comments, he’s dead wrong.  All of us are ecstatic about the awareness of the disease, the variety of grocery and dining options, etc.  How can this be hurtful to us?  Further, many of us have had to deal with years of symptoms, and I don’t think anyone honestly wants others to have to deal with it.  If someone is trying to fix their diet and tries GF, good for them.  My guess is that they aren’t faking it, as Mr. Campbell implies.  In fact, I honestly don’t understand why he would think people would go through the pain of adopting a GF diet unless they really were concerned about their health.

The whole article is an example of ignorance about the topic, and it’s particularly disappointing that this is what passes for science blogging.  If this is Science 2.0, I think I want 1.0 back.