NON-CELIAC GLUTEN SENSITIVITY: UNRAVELING THE MYSTERY

Here’s a diagnosis that doctors only started thinking about as recently as the 1980’s and now, decades later, although there are now plenty of gluten free items available both in grocery stores and on restaurant menus, doctors are still arguing about its existence. Many don’t even mention it to their patients with irritable bowel syndrome.

“Why the controversy?”, you ask.

The main symptoms of non-celiac gluten sensitivity (NCGS) include gastrointestinal issues like bloating, abdominal pain, diarrhea, and constipation, as well as non-GI symptoms such as fatigue, brain fog, headaches, and joint pain. In his book, “Dangerous Grains”, James Braly, M.D.  lists 200 symptoms associated with gluten (no typo, 200!). These symptoms are similar to those of celiac disease, which actually damages the small intestine but NCGS does not. Both conditions, celiac disease and NCGS cause intestinal hyperpermeability, which I have written about here.

First, what exactly is gluten?

Gluten is a family of proteins found in many grains, most commonly wheat. The two most well known of these are glutenin and gliadin, and when gluten causes health problems, it’s the gliadin causing trouble. On the plus side, gluten gives our wheat products their great texture and taste. The perfect croissant (and you know what they taste like) just can’t be managed with gluten-free flour.

The current guesstimate places roughly 20% of the population believing they are intolerant to gluten. Note: “believe they are intolerant” is not the same as “definitely intolerant”, which in itself is part of the problem. More about that later.

Let’s begin with the “definitely intolerant” group first. Celiac disease is an autoimmune condition, found in 1% of the population. In this situation, the gluten molecule triggers your immune system into creating an antibody that slowly destroys the lining of your intestine. In time, as you lose your ability to absorb important nutrients, you lose weight and develop potentially fatal vitamin deficiencies. The process is extremely slow, with the average person developing complications of celiac disease eleven years before they’re diagnosed.

Over those 11 years, main symptoms are digestive (bloating, gas, poor appetite, chronic indigestion, changes in bowel movements), but also a variety of unrelated symptoms (depression, fatigue, skin rashes, hair loss, weight loss, muscle cramps, easy bruising, changes in periods) caused by malnutrition.

One reason it takes so long to diagnose is that testing is complicated. Although now there are simple screening blood tests, the gold-standard test is to biopsy cells lining your small intestine. The procedure is done in the outpatient department of a hospital by a gastroenterologist who inserts a gastroscope into your stomach and then threads a delicate tube into your intestine and obtains a cell sample.  If celiac disease is present, the intestinal cells show a characteristic flattening, evidence of damage by the antibodies to the gluten molecule.

Treatment is avoiding gluten grains and the countless gluten containing foods. Once these are completely eliminated, your intestine heals, malabsorption reverses, and your health is restored.

Okay. That’s celiac disease. Often overlooked, often hard-to-diagnose, but totally noncontroversial.

NOW THE CONTROVERSY

AND IN THIS CORNER….Non-celiac gluten sensitivity (NCGS)

Because so much has been written in popular health books and online, far more people are avoiding gluten than necessary. Believing gluten to be “unhealthy”, people go “gluten-free”. Actually, gluten, a protein, is neither healthy nor unhealthy although some people certainly can be sensitive to it. NCGS is definitely no autoimmune disease and does not require the complete abstinence from gluten that celiac disease requires. On the other hand, it is harder to diagnose than celiac disease because there are no consistently reliable diagnostic tests.

Thus, a frequent patient-physician conversation goes something like this:

Patient: “Doctor, all those chronic symptoms, my bloating, my diarrhea, my fatigue, my joint pains, all went away when I gave up wheat.”

Doctor: “But your blood tests for gluten sensitivity were negative. Your biopsy for celiac disease was negative. You don’t have gluten intolerance.”

Patient: “But I’ve read…”

Doctor: “Look, you don’t have gluten intolerance. You’re being ridiculous. Going gluten-free is just the latest “fad” diagnosis. Eat all the wheat you want.”

Patient: “My chiropractor (or acupuncturist, nutritionist, food allergy test, medical intuitive) says I should give up gluten.”

Doctor: “Nonsense. Gluten grains form the base of the healthy food pyramid. You’ll probably end up malnourished without them.”

I’ve lost count of the number of patients who’ve related variations of this to me.

This patient has “classic” non celiac gluten sensitivity.

Dr. Braly’s Dangerous Grains is not exaggerating at 200 conditions. Over the many years, I have been suggesting a temporary trial of going gluten free, some patients have been able to go off their blood pressure meds, their anti-inflammatories, mood stabilizers and ADD meds. Note: “Some”. Not the majority, but enough to warrant GF a trial.

One patient recently told me how she’d been trying to get pregnant and was scheduled for in vitro fertilization (IVF). A nutritionist suggested that she try going completely gluten free. Six weeks later, and after two years of trying, she ambled into her fertility specialist’s office, proudly harboring her very own embryo and all without his help.

If you think you might be sensitive to gluten but aren’t sure, try this elimination-reintroduction test:

1. Eliminate all sources of gluten for at least three weeks. You’ll need to read labels, if you eat food with labels. Or build your menu on vegetables, fruits, and lean protein and you’ll end up healthier in the process. If you rely on packaged foods, shop the gluten-free section at Whole Foods.
2. At the end of three weeks, if you’re gluten sensitive you’ll be feeling better. I realize “better” sounds vague, but it can be anything: better digestion, more energy, crisper mental clarity, easier breathing, a rash that clears up, less achiness in your muscles and joints. Conversely, if you don’t feel an iota better after gluten elimination, you’re likely not sensitive to it.
3. If you’re feeling better, make doubly sure it’s gluten by reintroducing gluten into your diet. If symptoms return, you’re probably gluten-sensitive.
4. People who feel better off gluten need to differentiate between celiac disease and non-celiac gluten sensitivity. Ask your doctor to test your blood for gluten antibodies. If the result is negative, you need no further testing. If positive, keep eating gluten until instructed to stop. Your doctor will recommend a small-intestine biopsy to confirm celiac disease, and quitting gluten before the biopsy will invalidate the test.

AND NOW—IN THE OTHER CORNER….OVER RELIANCE ON GOING GLUTEN FREE: You may, by going gluten-free, be depriving yourself unnecessarily of a lot of good food and not contributing a single thing to your health and well-being. This was the subject of a very interesting book, “The Gluten Lie” by Alan Levinovitz, Ph.D. who believes too many people are literally backing themselves into a corner ‘nutrition-wise’ trying to follow one nutrition fad after another.

Unless you have specific symptoms that vanish when you go gluten free (and return when you reintroduce gluten), don’t expect any magic to happen in your body when you go gluten free. Even though the “gluten-free” section is larger than in the past, it’s still small compared to the rest of the store. The ‘GF’ items on the menu of a high end restaurant tend to be disappointing. If you’re prone to obsessive thinking, you’ll be subjecting yourself to a lot of unnecessary stress as you ponder, “Can I eat that?” or “I wonder if that contains any gluten.” You may find yourself receiving fewer dinner invitations as host/friends despair trying to prepare a meal for you that will single your main dish and dessert as ‘GF’.

In clinical studies of “gluten avoiders without celiac”, actual symptoms induced by gluten challenged ranged from 10% to 40% of patients. All the others had been avoiding gluten unnecessarily. In other words, going gluten free (or even reducing gluten) must do something positive for your health, otherwise you’re doing a disservice to your body. To make a food “gluten-free”, manufacturers often add more sugar and more fat; not surprisingly, people who go GF occasionally are surprised to find themselves gaining weight.

Anyway, if every time you eat a goodly portion of gluten (obviously more than a cookie), you feel ill, and you’ve tested negative for celiac, consider yourself to have non celiac gluten sensitivity and generally reduce your exposure. Remember non celiac is not like an allergy, so if you get a craving for a slice of Lou Malnati’s, the price may be bloating and diarrhea.  If you can’t tell a difference, with or without, then your deprivation is unnecessary.

 If you need some guidance with all this, see our nutritionist, Olivia Darrow, and save yourself unnecessary grief.

Be well,

David Edelberg, MD