Wednesday, March 5, 2014

The 7 Questions the Gluten-Free Community Should be Asking

When we say (and to be clear, that's the royal "we") that wheat and gluten are bad, and that they’re worse for us today than they used to be, we’re actually conflating three or more distinct questions: a) For whom is wheat/gluten bad? b) Is today’s wheat more toxic for those with active celiac disease? And c) Why are rates of celiac disease higher now than they were a few decades ago? These are separate questions each with separate answers.

Listen, I know that we’re all individuals, with varied food sensitivities and dietary restrictions. But as a gluten-free community, we also have (and need) some community-wide guidelines and answers to make life livable, so that we’re all not reinventing the wheel from scratch for ourselves each time someone comes to the gluten-free table for the first (or tenth) time.

And so here is my list of the 7 questions the GF community should be asking:

1. What’s in and what’s out on a gluten-free diet?

No one’s going to argue that a tomato or an almond or an egg aren’t gluten-free. They are. And I’m sure you’ve seen the common listed of widely accepted gluten-free foods. But some foods remain controversial, and we need to sort through the confusion to offer definitive guidance on what constitutes a “proper” gluten-free diet. For example, are beers brewed from gluten-containing grains and processed to remove gluten safe, and do we have appropriate and sufficiently accurate tests to say so with confidence? Ditto for distilled spirits made from gluten-containing grains, such as vodka made from wheat. The fact that we’re still debating issues such as these means we either haven’t adequately answered the question, haven’t popularized the accepted answer, or both.

2. What persistent myths can (and should) be put to bed (for good)?

You’ve probably heard claims that, like a zombie rising from the grave, keep coming back (sometimes seemingly from the dead) again and again and again. “Going gluten-free will help you lose weight.” (I think this one may finally be past its peak and starting to fade. Hooray!) Myths are a troublesome thing—they’re a dangerous combination of false and persistent. Let’s squash the ones that deserve squashing, once and for all.

3. Why is celiac disease more common today than it once was?

A Mayo Clinic study comparing celiac disease prevalence in the 1950s and 1990s/2000s found that celiac disease is four times more prevalent today than it was decades ago. This is independent of rates of diagnosis. What environmental and other factors are causing a population of people (e.g., Americans) with basically an unchanged genetic predisposition to develop active celiac disease at such higher rates? What’s causing the spike? (I’ll explore some intriguing possibilities in forthcoming blog posts.)

4. What other conditions can be definitively linked to gluten exposure?

Celiac disease is often described as sitting at one extreme end of a gluten intolerance spectrum. But as we saw with the medical and scientific community’s identification, acknowledgement, and acceptance of non-celiac gluten sensitivity as a legitimate condition, what other health challenges can be definitively linked to dietary exposure to gluten? And how are the dietary and medical/health needs of those people similar to or different from those with celiac disease, arguably the most studied gluten-related health challenge?

5. Is wheat/gluten really bad for all the world’s population?

As I wrote last week, the claim that wheat/gluten are bad for all people everywhere is nearly inescapable these days, thanks to some current and quite sensational books. So here’s the challenge: If the claim is yes, prove it…with a preponderance of peer-reviewed science (not hearsay and anecdotal examples). Big claims demand big evidence. And here’s the thing about sweeping claims that come without caveats or qualifiers: to consider them proven, they must always hold true, every time. To disprove them, they only need to be shown false once. (See where I’m going with this? In my strong opinion, the answer to question #5 is a resounding “no.”)

6. How do we resolve contradictory or conflicting claims when the community doesn’t agree?

Members of the gluten-free community are looking for straightforward guidance and information. But sometimes, we’re left with gray areas, disagreement, or lack of resolution or consensus (sometimes because the research hasn’t yet gone far enough to offer us definitive resolution, sometimes because we’re unwilling to accept the answer, and sometimes for other reasons). So how do we resolve when trusted, respected sources of information—like the major celiac and gluten intolerance organizations—don’t offer a unified perspective on an issue? Consider oats, for example. Most research suggests that pure oats are safe for people with celiac disease. We also know that oats are often cross-contaminated with wheat, making it crucial to source certified gluten-free oats. But then there’s the issue of a small minority of the celiac population actually cross-reacting to the protein in oats (avenin). And then there’s some research that suggests rather that some varieties of oats are more “toxic” than others, and that all people with celiac disease would respond negatively to the more toxic versions of oats. I could point to lots of other examples, such as the 20 ppm standard, vs. a more stringent standard, vs. the “zero tolerance” subset of the gluten-free community.

7. How can we educate the non-GF community?

For better or worse, there’s a big fad/trend component to the gluten-free diet right now. Research and consumer surveys show that far more people are “trying out” a gluten-free diet than have a medical reason to do so. How then do we educate the media and the public (including restaurants and our own family and friends) about the difference between those jumping on the gluten-free bandwagon and the medically gluten-free community? And how do we educate them about the issue of cross-contamination and fostering an inclusive dinner table?

So those are my questions. What do you think? Do you agree? Have some of those questions been sufficiently answered and we should delete them from the list? What other questions might we ask (and answer) that I didn’t include here?

Maybe the answer to some of these questions is that, like I said in my intro above, we’re all individuals, and so there will always be caveats and qualifiers and exceptions to the gluten-free rules. And if that’s the case—and it’s totally possible and legitimate that it is—perhaps we’re destined to continue asking and debating questions like these.



Grandmashadowcat said...

Excellent questions - many that I have pondered over and over. Education, definitely! "Oh! You can eat what I brought - it's gluten free. Honey is gluten free, right?" (yes that really happened) More proof? Absolutely. I'm so tired of all the unsubstantiated hype, most of which gets thrown in my face when I say I am gluten free - both in support of and challenging. I wish everybody would read your blog. Wish more that I had the answers.

Jess M. said...

Hi Peter,
Thank you for your post. I was diagnosed with CD in 2010 and I've been following your page since reading The Gluten-Free Edge last year (I am a runner).
As I've tried to navigate the waters of the GF/celiac online community it seems that many with CD or NCGS are confused and floundering, still trying to accept their diagnoses and figure out what foods they can (and cannot) eat. I am well past that point and am also in the midst of trying to answer some of the questions that you listed.
I was fortunate to be able to attend the ICDS in Chicago last Sept. and I felt that the doctors who presented, along with Melinda Dennis, did a great job of debunking some of the common celiac myths (i.e. that there are no "cross-reactive" foods, that corn and coffee are safe, that GF diet does not cause weight loss, etc). Amy Leger and some other bloggers who were at the ICDS did post many of the debunked myths on their blogs, and I'd be more than happy to share info from the presentations as well. The powerpoint slides from the ICDS just become available to the general public about 1 week ago.
For #3, I believe that the $ is on the alteration of our gut flora/microbiomes v. exposure to some yet to be defined virus v. both, but I look forward to your upcoming post(s) on the topic.
For #4, Drs. Leonard and Vasagar just wrote a great review paper called "US perspective on gluten-related diseases" that was published in the journal Clinical and Experimental Gastroenterology. Like me, Dr. Vasagar is an MD with celiac disease, so she has both a professional and personal interest, and really did justice to the topic.
Besides your blog, I am unsure of the right forum for trying to come up with some type of consensus. In the medical field, especially in my specialty, most collaboration is actually done in person at conferences, where large numbers of "experts" can get together, share information, and network. Does such an opportunity exist for celiacs and gluten sensitives who really want to try to tackle such issues? If not, what other avenues are available? I've been acting pretty unilaterally via my web page, but would love to collaborate on some level with others with interest.

Anonymous said...

Number 7 is the hardest for me. I really wouldn't being doing gluten free if I wasn't celiac. I've never been a fad-diet person. So, when I say I'm gluten free, the assumption that I'm doing some fad diet really hurts.

Tasty Eats At Home said...

#6 - This is the REAL question.
It is so hard to be unified when there is so much false information out there, and so many voices (including bloggers, like you and me) can be heard loud and clear and be spreading false information.

And I can't state that I didn't buy into my fair share of false info during my GF journey either. I did.

It's a tall order for sure. But the more scientifically-backed information is shared, the more we debunk these myths, and get the real info out there, the better.

Keep up the good work.