By Alicia Woodward

Q & A with Alessio Fasano, MD

The latest on gluten sensitivity and celiac disease

A groundbreaking study recently released by the University of Maryland School of Medicine’s Center for Celiac Research demonstrates that gluten sensitivity is a distinct medical condition that differs from celiac disease. Living Without’s editor Alicia Woodward spoke with Alessio Fasano, MD, the study’s lead investigator. A world-renown expert on celiac disease, Fasano is professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Center for Celiac Research.

LW Thanks to your team’s research, we now know that gluten sensitivity actually exists. What does this mean to the gluten-free community?

Dr. Fasano In my humble opinion, it’s a big deal. First, we’ve moved gluten sensitivity, also called gluten intolerance, from a nebulous condition to a distinct entity—and one that’s very distinct from celiac disease. Gluten sensitivity affects 6 to 7 times more people than celiac disease so the impact is tremendous. Second, we now understand that reactions to gluten are on a spectrum. The immune system responds to gluten in different ways depending on who you are and your genetic disposition. Third, there’s a lot of confusion in terms of gluten reactions. Gluten and autism, gluten and schizophrenia—is there a link or not? These debates are on their way to being settled. And fourth and most important, for the first time we can advise those people who test negative for celiac disease but insist they’re having a bad reaction to gluten that there may be something there, that they’re not making it up, that they’re not hypochondriacs. Once it’s established that a patient has a bad reaction to gluten, it’s important to determine which part of the spectrum he or she is on before engaging in treatment, which is the gluten-free diet.

Do you believe people can move along this spectrum? Could someone be gluten sensitive and then develop celiac disease?

No, I don’t think so. The three main conditions—celiac disease, gluten sensitivity, wheat allergy—are based on very different mechanisms in the immune system. Given that fact, it’s hard to imagine the possibility that you could jump from one to the other.

Yet many of the symptoms of gluten sensitivity and celiac disease are the same.

That’s right. While there’s a clear distinction on the immunological side, there’s tremendous overlap on the clinical side. If you came to my clinic complaining of tingling in your fingers or depression or headaches from eating gluten, these symptoms (and many others) are associated with celiac disease. If your celiac tests are negative, these same symptoms could point to gluten sensitivity. There’s no question about that.

Up to 20 million Americans may have gluten sensitivity. That’s in addition to 3 million who have celiac disease and 400,000 to 600,000 with wheat allergy. Humans have consumed wheat as a staple for generations. What’s going on?

Although we’ve been eating wheat for thousands of years, we are not engineered to digest gluten. We are able to completely digest every protein we put in our mouths with the exception of one—and that’s gluten. Gluten is a weird protein. We don’t have the enzymes to dismantle it completely, leaving undigested peptides that can be harmful. The immune system may perceive them as an enemy and mount an immune response.

It seems like we’re seeing an explosion of gluten-related health problems.

Two components are coming together to create this perfect storm. First, the grains we’re eating have changed dramatically. In our great-grandparents era, wheat contained very low amounts of gluten and it was harvested once a year. Now we’ve engineered our grains to substantially increase yields and contain characteristics, like more elasticity, that we like. We’re susceptible to the consequences of these extremely rich, gluten-containing grains. Second, and this applies to the prevalence of celiac disease that’s increased 4-fold in the last 40 years, is the upward trend we’re seeing in all autoimmune diseases. We’re changing our environment faster than our bodies can adapt to it.

You mentioned the link between gluten and conditions like autism and schizophrenia. Can you elaborate?

This is very controversial. Some people believe undisputedly that gluten plays a role in these kinds of conditions while others say that’s bogus. Most likely the truth is in the middle. I have a hard time believing that all kids with autism improve once they go on a gluten-free diet. At the same time, I have a hard time believing that gluten has absolutely nothing to do with these behaviors. We know in clinic that people can have behavioral issues due to gluten, such as short-term memory loss, mood swings, depression so you can imagine schizophrenic and autistic behaviors. If it’s true, as I believe, that complex diseases like autism are final destinations but that you can take different paths to get there, I have to believe that one of those paths for a subgroup of patients could, in fact, be gluten sensitivity.

Is there a test for gluten sensitivity?

No. So far, the only way to determine gluten sensitivity is an exclusion diagnosis. You have a problem with gluten. The problem goes away when you go on a gluten-free diet and comes back when you add gluten back into your diet.

What would you advise someone who believes they’re gluten sensitive, given there isn’t a conclusive test right now?

Do not try the gluten-free diet before you see your physician. You must exclude a celiac diagnosis before you start the diet. If celiac disease and wheat allergy and all other causes of your symptoms have been excluded, then and only then is it worthwhile to do a gluten-free trial.

Do you recommend that most people avoid gluten, provided they get tested for celiac disease first?

I wouldn’t go to this extreme because the gluten-free diet isn’t a walk in the park. The bottom line is quality of life. If you’re suffering with symptoms that make your life miserable and you’ve investigated all possible causes, including celiac disease, I don’t see anything wrong with going on the gluten-free diet. If you’re gluten sensitive, you’ll see quick improvement on the diet, a matter of days or weeks at the most. It’s not weeks, months or years like with celiac disease.

Having said that, at the clinic we take care of athletes who are healthy but say they feel much more energetic and have increased endurance on the gluten-free diet. Novak Djokovic, the tennis star who’s gluten sensitive, claims his endurance, capability to concentrate and energy have skyrocketed since going gluten free.

I’ve heard you say that gluten sensitivity is where celiac disease was 30 years ago.

It’s déjà vu. The patients, as usual, were visionary, telling us this stuff existed but healthcare professionals were skeptical. The confusion surrounding gluten sensitivity—testing, biomarkers—is exactly the same confusion we had around celiac disease 30 years ago. So we’re starting all over again now.

What’s surprised you most about the studies you’ve conducted?

I was shocked to learn that certain people have tricks that allow them to tolerate gluten for 60 or 70 years without getting sick—and then suddenly in their mid-70s, they develop celiac disease. This means it’s not destiny. You’re not born to develop celiac disease. That’s mind-blowing to me. So I’m dying to know what kind of tricks these people use to tolerate gluten for so long. If we learn the tricks, we can apply them to everybody at risk for the disease and put them in a stage of tolerance so they’d never get the disease. And here’s another thing—why do they suddenly lose this trick? If we knew, we could use that knowledge to avoid other problems. Celiac disease is a prototype of other conditions, like diabetes, multiple sclerosis, rheumatoid arthritis, cancer, heart attack, stroke. The mechanism is all the same. So if we can understand what the heck is going on with celiac disease, it could lead to huge, huge changes in preventive medicine.

For more about the Center for Celiac Disease Research, visit celiaccenter.org.