Over the years I've been involved in this community, I've met many many people who have seen their health improve when they eliminated wheat gluten from their diet. But I also see it as part of a worrying trend that relies all too much on self-experimentation and self-diagnosis. Often when I meet these people they are noshing on a burger without a bun at a regular restaurant or ordering a salad a restaurant like Hanna's Bretzel where gluten-free ingredients are laid side by side with non-gluten free ingredients.
If these people actually have celiac disease, this is probably not an acceptable behavior. To be clear, celiac disease, which is an autoimmune disorder, is an extremely serious disease. Any gluten in the diet can contribute to long-term health problems and even cancer.
Scary stuff. Scary enough that celiacs need to seriously consider cross-contamination at places like restaurants. Fries that are fried in the same oil as breaded chicken nuggets, eggs cooked in a pan that was used to cook French toast, salad made from lettuce served with tongs used to pick up croutons, these can introduce damaging gluten into a celiac's system. So it's not acceptable to just go to a regular restaurant and order a burger with a bun and some fries. Doing so might mean subjecting yourself to chronic damage. Senza, which is the gluten-free restaurant I reviewed recently, does not allow any gluten at all in its building ever. That is the level of strictness required to achieve remission of damage in most celiacs.
It's not surprising to find that in our culture where eating out is so common, many celiacs still present with intestinal damage years after initiating a gluten-free diet.
I've asked many of these people who eliminated gluten from their diets and saw an improvement why they do not get tested for celiac. Sometimes it's a financial issue. They feel they cannot afford the tests. Other times they are concerned because a true diagnosis by intestinal biopsy requires that they eat gluten for some time before getting the test. I'd say that a month of feeling sick is worth it in order to avoid years of chronic damage. The alternative would be to commit to a truly strict gluten-free diet and stop eating at the local Irish pub.
Which is think is totally unnecessary and silly for those of us who are not actually celiac. There is growing evidence non-celiac wheat sensitivity exists, but none that show that trace gluten could cause the kind of damage seen in celiac. It is likely it is more similar to lactose intolerance, which is dependent on dose (few lactose intolerants can truly never tolerate any lactose ever), than an autoimmune condition like celiac.
I'm completely against strictness when it is unnecessary. For me it absolutely is. I was able to avoid a biopsy because I did a genetic test that showed I completely lack any of the genes related to celiac. Through the FODMAPs elimination diet, I found out it was the fructans that were causing trouble for me. I do occasionally consume wheat products, primarily fermented wheat and those made with heritage grains. They are not a staple for me because I don't think they are particularly great for you (that doesn't mean they are "bad") and they require quite a bit more effort than just making a meal with fresh meat and vegetables. I will continue to eat whatever I can get away with on special occasions and when traveling unless I see conclusive science that says any gluten ever is bad for anyone.
But if you have the genes, that doesn't mean you have celiac, it just means it's possible for you to have it and you should pursue the matter further. I created this chart once to explain it to a friend:
Yes, it's crappy to have to go through all that to get a diagnosis and it can be hard to find a doctor that cares, but I truly believe it's worth it to know. Especially since celiac is becoming more and more common. I'm not a fan of Wheat Belly, (also see Dr. Deans' review) which essentially took a blog with some interesting ideas, and I suspect the publisher said "find everything that could possibly be bad about wheat and mention it without any nuance whatsoever." You can write such a book about almost any food. It reminds me of Whitewashed, which is about milk. I'm still waiting for the book about how evil shrimp is because some people are allergic to it.
Shrimp is Actually EVIL SEA BUGS THAT CAUSE LEAKY GUT- the book
On that note, a professor associated with the grain industry recently published a critique of the book. There are some good points there on Davis' hyperbole, misuse of studies (not citing the follow-up that disproves his theory, irrelevant in vitro studies, studies on genetically engineered mice) and use of the same tactics that plant-based zealots use (acidification! AGES! glycemic!), but right off the bat I spotted a bunch of mistakes. One of the most obvious is that the author mentions the Joe Murray study on historical blood samples. It says "the analysis shows that 0.2% of recruits had the gene in 1950 compared with 0.9% of recent recruits." And then it goes on to say increase prevalence might be due to better identification and awareness. But that study specifically refuted that, as it was not even studying genes, it was studying antibodies. It was an important study in pointing to increased prevalence, which should surprise no one who studies autoimmune diseases, most of which have increased in prevalence.
“This tells us that whatever has happened with celiac disease has happened since 1950,” Dr. Murray says. “This increase has affected young and old people. It suggests something has happened in a pervasive fashion from the environmental perspective.”
Dr. Murray lists several possible environmental causes of celiac disease. The “hygiene hypothesis” suggests the modern environment is so clean that the immune system has little to attack and turns on itself. Another potential culprit is the 21st century diet. Although overall wheat consumption hasn’t increased, the ways wheat is processed and eaten have changed dramatically. “Many of the processed foods we eat were not in existence 50 years ago,” Dr. Murray says. Modern wheat also differs from older strains because of hybridization. Dr. Murray’s team hopes someday to collaborate with researchers on growing archival or legacy wheat, so it can be compared to modern strains.
Murray's team also used those blood samples to show that the undiagnosed airmen were more likely to have died young, possibly as a consequence of undiagnosed celiac. Undiagnosed celiac is frankly dangerous, particularly since it takes so little gluten to cause damage. There is still an argument about whether or not gluten is bad for everyone, but we aren't going to win over the medical profession if we use hyperbole instead of saying "hey did you consider whether or not your patient with diabetes/ibs/osteoporosis/arthritis/etc. might have celiac or wheat sensitivity?"
So if you suspect that wheat is an issue for you, I strongly recommend taking time to get a firm diagnosis so you can know if you need to be 100% gluten-free.