Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, November 11, 2014

The backlash against gluten-free diets: why it's wrong

We've all seen it.  And it was predictable.  There's a heavy backlash against gluten-free dieters and it's only getting stronger.  The negativity toward gluten-free dieters can get downright nasty--they're portrayed as silly trend-followers who don't really understand nutritional science.  The backlash shows up on an almost daily basis in the form of punchlines on nighttime talk shows or snide comments from your friends and co-workers.

Here's why the backlash is just plain wrong...

First, let me establish that I don't have a dog in this fight.  I don't follow a gluten free diet per se.  I do eat a low-carb, Paleo-ish diet, which happens to mean I consume little gluten as compared to, say, someone on the standard american diet (SAD).  But if I want to eat a particular food that otherwise fits my diet and by chance contains gluten, I won't hesitate.

Second, let me say a few words about why there's a backlash.  It's two simple reasons:  There is a small minority of people who simply cannot shut up about their gluten-free diets.  They utterly fail to comprehend that there are few things less interesting than hearing about someone's specialized diet. These people invited the backlash and they unfortunately raise ire against everyone else who modestly adheres to the diet because it makes a difference in their day-to-day well-being.

My advice to these gluten-free megaphones: become as low-key about your gluten-freeness as you possibly can. If you're looking for something suitable on a restaurant menu, figure out a way to ask if it's gluten free without making it sound like you'll die if a speck of gluten crosses your lips - and preferably without even using the word "gluten."  I assure you that's quite possible.

The other reason is that most people (especially we Americans) just aren't comfortable not having a strong opinion about a topic that has entered the public consciousness. We're an opinionated people for better for worse--mostly worse.  We go to the grocery store and it seems like half the product labels scream "Gluten-Free" and we want to have something to say or tweet or status-update about that, damnit.  So we feel like we're somehow obligated to choose one side of the issue of the other; either we're a gluten-free champion or a bitter cynic.  Just once I'd like to meet someone who says, "You know, I don't really have an opinion on gluten.  I haven't read enough about it to form a knowledgeable point of view."

Nintey-five percent of the time, when a gluten cynic shares their viewpoint, it goes like this:  "Gluten is only a problem for people with Celiac's disease.  If you don't have Celiac's, gluten is not an issue."

Ah, if only nutritional science was so simple.  That's like saying, "If you don't have diabetes, you can eat as much sugar as you want without any health repercussions."

Here's the real deal.  Yes, Celiac's is a serious auto-immune disease and being gluten-free is imperative for people with that disease.  But for the rest of us, there's still a large and growing body of research that suggests that gluten is pro-inflammatory.  And inflammation has been implicated as a root cause of a range of diseases, from heart disease to Alzheimer's; from autism to migraines, and many more.

Even if you don't have any of those diseases, you simply won't feel as strong and as healthy as you otherwise would if you have excess inflammation.  The inflammation might be sub-clinical (you're hardly aware of it) but it could be keeping you from feeling more energetic, clear-headed, and healthy.

This past Summer, the results of a study were published that purported to cast doubt on whether non-Celiac's gluten sensitivity was 'a real thing.'  This of course became translated into attention-grabbing headlines proclaiming the whole gluten-free craze to be some sort of hoax.  Witness the utter glee behind these "neener-neener" headlines, which totally misrepresent the study they reference:  Google results for "gluten proven false."

First, the actual "study" that was referenced in these headlines, from Monash University in Australia, followed only 37 people, which is about as significant as as a wisp of dust.  The study tracked the subjects entire week!  The patience of those intrepid scientists is astonishing, isn't it?

But more importantly, even if you were to take the results of that one small study seriously, it only purports to cast doubt on a condition called "non-Celiac's gluten sensitivity."  Again, let's go back to the sugar analogy.  I don't think anybody doubts that refined sugars, in the large amounts consumed in the SAD, are bad for one's health.  It's not just about the immediate affects. Over a lifetime, consuming high amounts of sugar leads to obesity and diabetes, among other things.  This process plays out over a very long time, and does't require any kind of sugar "sensitivity" condition.

Studies suggest that the pro-inflammatory affect of gluten may operate in the same way.  Having looked at the studies showing the pro-inflammatory affects of gluten, it's really hard to discount them. (See, e.g. 1, 2, 3, 4, 5, )  Nobody has refuted any of these findings.  Certainly it doesn't take a degree in nutritional science to understand the difference between the myriad studies that observed the actual chemical process leading to inflammation from gluten, as compared to single study that followed a group of self-selecting gluten sensitive subject for a mere 7 days.

But of course we know which study made the headlines.

I'm not saying that anyone has proven with 100% certainty that gluten is categorically bad, in any amount, for 100% of the population.  Like most controversies regarding nutrition, A) there will never be enough evidence to remove all doubt, and B) the actual answer is probably highly nuanced, meaning it's possible that gluten has both benefits and detriments, and that the "right" amount depends on a number of variables, including difference in each individual's biochemistry. Again, think of sugar.

But if you're one of those bitter gluten cynics, you might want to ask yourself how sure you are that you're correct.  Even if you're not completely convinced by the gluten/inflammation connection, you'd have to admit that there's credible evidence in favor of it--a lot of it.  If you can refute the five studies I've linked above (a tiny sample), let's hear what you got.  Until then, do you really want to be rolling your eyes and making fun of people on an issue that is, at the very least, unresolved?  It's a legitimate debate and you ignore that at the risk of looking like a fool...

With the weight of the evidence pointing toward at least some real and significant problems associated with gluten consumption, it is likely you will be on the wrong side of history when all is said and done.  Might as well save yourself the backtracking now and quietly let each person explore for themselves whether reducing gluten intake is beneficial to them.  Let's all check back in 10 to 15 years and see what science says then.

I predict that, in the short term, the gluten backlash will get stronger until most gluten-free dieters are basically forced into the closet.  But the movement will quietly stick around until it gains more acceptance and, eventually, becomes more or less a permanent part of the conversation, just like....



  1. No words. Just a slow clap.

  2. Hi Patrick -

    This is my favorite CFS blog. I used to have a blog, but blogger exploded it, and I haven't had the time or motivation to get it back up. So I thought I'd post this here.

    What would you do if you were cured all of a sudden?

    Personally, I like to think I'd sing from the mountaintop, try and cure everyone with this illness, and live a clean life putting only the healthiest things imaginable in my body.

    But in reality I'd probably spend a long time living carefree, drinking, smoking, living off Coke and ice cream. After 2 decades of living very carefully due to CFS, picking apart everything I put in my body, it sure would be nice to not give a damn what I was putting in my body.

    - Greyson James

    1. Hi Greyson! Long time no see! I must admit your post alarmed me when you said Blogger exploded your own blog. Yikes! I would be beyond upset if I lost all the work I put into this blog. I've been meaning to back it up but haven't gotten around to it yet.

      That's a good question and one that I've seen discussed on the message boards a few times. I think I would fall somewhere in the middle. I think I would definitely retain some of the healthy habits I have picked up - especially the diet. But I would go back to surfing, exercising, occasionally drinking, coffee, and travelling. I don't think I would ever go back to gorging myself on bread, sugar, non-organic foods, etc. My diet changes have made a difference in how I feel, despite the continuing battle with ME/CFS. I would like to treat myself to a chicken burrito or a slice of pizza every once in a while, but it would be so hard not to let that be a slippery slope. So I think I'd stay with my plan of just not eating any of that stuff....ever.

  3. "Witness the utter glee behind these "neener-neener" headlines, which totally misrepresent the study they reference" Haha! BRILLIANT post, which actually made me LOL three times.

  4. By the way, I've been meaning to back up my blog, too- any idea how one would go about doing this besides copying and pasting every every?

    1. Hi Elizabeth! long time no talk. We have a lot to catch up on.

      I think I looked into backing up my Blogger blog a long time ago and I believe the consensus was that the only way is to copy and past every post in a save-able format. Argh. But I haven't looked into it in a while. There's got to be a better way, you'd think. If you find anything, please let me know.

    2. So Valacyclovir - I've been on it for maybe 3 years now. It's really hard to say if it's helping or not. Something* in my supplements / Rx routine seems to be helping, but I can't figure out what. My doctor prescribed it because my EBV IgG titers were in the "equivocal" range, meaning it is ambituous whether the results could indicate a reactivated infection. I have actually been off of it for the last month because they refilled my Rx with a generic brand that hurts my stomach, and I haven't noticed a difference. BUT I was told its a long-term result anyway because all the Valacyclovir does is prevent the virus from replicating and spreading, but it takes at least 6 months for the existing viruses in your tissues to die out on their own. Does that make sense?

    3. I think you are really smart to focus on Candida for a while. FWIW, my doctor recommended pro-biotics 2x a day (morning and night) to really attack the candida problem. Also to rotate among 3 or 4r brands for a good variety of good bacteria. Maybe ask your doctor about that??

      Anyway, when I cut out sugar from my diet, I could immediately notice the differnce. That tell-tale white film on my tongue was reduced significantly*. It still comes and goes to varying degrees, but most of the time it's very light compared to before.

    4. Can I ask you about the Mast Cell thing? How did you get diagnosed with that? What was involved?

      I didn't know that you couldn't do IVIG if you have mast cell disorder. I have a friend who just started IVIG. I'm really hoping that this is the thing she needs to avoid they routine trips to the hospital when her immune system absolutely collapses from a simple virus.

      I've been so great to begin to catch up with you. It's been too long!

  5. I never saw these replies because I stopped getting all blog notifications. I think I set up some default filter incorrectly in my email. Anyway, hello! My doctor said I am "dripping in EBV" - did I tell you that? Gross. But I've never done antiviral Rxs or supplements. And still haven't kicked sugar or started Nystatin. After my reaction to Cromolyn, I'm scared of taking anything.

    I was diagnosed with MCAS based on my history of idiopathic anaphylaxis, vasovagal syncope, flushing, angioedema etc. My tests were normal, but they're unreliable and they weren't done during a reaction. It's not that someone with MCAS can't get IVIG, it's just that I'm too chickensh*t. I've been approved for subQ and I'm even too scared to do that! My IgG is lower now that when Dr. C checked it, so it really could make me feel better, but even normal people have severe reactions, so I'm just spooked. I've still never had a cold or virus since ME started. I am hyper-careful and housebound, which protects me.

    Hope the new house is treating you well and the family is healthy. :-)

  6. Patrick, I wrote a reply to this about a week or two ago, did it not work?

    1. Hi Elizabeth, your comments absolutely did come through and I am always so happy to see them. I just have my comment settings such that i have to approve all comments before posting (because of the spam), and I hadn't checked into my blog in over a week.

      That's fascinating about your MCAS diagnosis. Does that mean you do NOT have ME/CFS? Or do you have MCAS in addition to ME/CFS? This whole world of chronic conditions is so complicated and intertwined isn't it?

      You mentioned that one of my posts made you wish you could take supplements. I don't think you're missing out on anything, to be honest. None of them alone are true game-changers. If anything, they each add just a tiny bit of help - in most cases not even anything I can tell if I stop taking it for a day or two. In fact, while I suspect that some of my supps and Rx's have helped me, I really don't know for sure. It's possible I would have seen improvement had I simply done nothing.

      It's always great to hear from you Elizabeth.