Controversial Diagnosis #5: Non-Celiac Gluten Sensitivity

You’d be surprised at the degree of controversy surrounding this seemingly innocuous topic, not only among doctors but also patients (and best not to bring it up with anyone in the baking industry). This diagnosis has generated entire aisles of gluten-free products in grocery stores and GF selections on restaurant menus. And just perhaps you’re getting fewer dinner invitations because your host doesn’t want to bother with worrying about what you can and cannot eat.

First, what exactly is gluten? Gluten is a family of proteins found in many grains, most commonly wheat. The two best 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 wheat products their exceptional texture and taste. The perfect croissant just can’t be managed with gluten-free flour. Here’s a cute two-minute cartoon about gluten.

The current guesstimate says roughly 20% of the population believe 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.

Celiac disease: 100% gluten intolerant
About 1% of the population is definitely intolerant because they have celiac disease. In this condition, the gluten molecule triggers the immune system into creating an antibody that slowly destroys the lining of your intestine. Over time, people with celiac lose their ability to absorb important nutrients, losing weight and developing potentially fatal vitamin deficiencies. The process is extremely slow, with the average affected person developing complications of celiac disease 11 years before a diagnosis is made.

Over those 11 years, the 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 celiac disease is that testing for it is complicated. Although now there are simple screening tests, the gold-standard is to biopsy the cells that line your small intestine. This 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 through which a cell sample is obtained.  If celiac is present, the intestinal cells show a characteristic flattening, evidence of damage by the antibodies and gluten molecule.

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

That’s celiac disease. Often overlooked, often hard to diagnose, but completely noncontroversial.

Non-celiac gluten intolerance
Far more common (remember, almost 20% of the population believes they’re gluten intolerant) and more often overlooked than celiac is non-celiac gluten intolerance, a completely different condition. The reason physicians miss it is their obsessive reliance on positive lab tests to confirm a diagnosis. Thus a frequent patient-physician conversation goes something like this:

Patient: “Doctor, all those chronic symptoms I had 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. 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 relayed variations of this conversation to me. So who’s right? Is there or is there not a condition called non-celiac gluten intolerance? The answer is that both are sort of true.

In one corner we have the abandon-all-gluten group, also known as GAWC (gluten avoiders without celiac).

In his book Dangerous Grains, James Braly, MD, lists upward of 200 conditions (no typo, it’s 200) linked to gluten intolerance. A number as high as this means if you’re experiencing virtually any chronic physical or emotional condition for which a diagnosis is not obvious (obvious like a slipped disc, for example), then it’s unequivocally worth testing yourself for gluten intolerance.

One of our patients recently told me she’d been trying to get pregnant and was scheduled for in vitro fertilization (IVF). A nutritionist suggested she try going completely gluten-free first. 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.

Dr. Braly also points to (and I very much confirm) patients who, by giving up gluten, are able to discontinue medications that had been prescribed to keep gluten-induced symptoms in check.  These drugs include anti-inflammatories, blood pressure meds, diabetes meds, mood stabilizers, ADD meds, and more, all as a result of giving up gluten.

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 simply build your menu around 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 your grocery.
  2. At the end of three weeks, if you are indeed 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 one iota better after gluten elimination, you’re likely not sensitive to it.
  3. If you’re feeling better, make doubly sure it’s the gluten by reintroducing gluten into your diet. If your symptoms return, you’re probably gluten-sensitive.

People who feel better without 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.

Consider the downside of gluten-free
It’s worth noting that many gluten-containing foods are pretty much devoid of nutrition (pretzels, pastries, most white breads, etc) and quitting them can help you lose unwanted pounds. However, by going gluten-free you may in fact be depriving yourself unnecessarily of some good foods and not contributing a single thing to your health and well-being. Unless you have specific symptoms that vanish when you stop eating gluten (and return when you reintroduce it), don’t expect any magic to start happening in your body just by quitting it.

Foods prepared without gluten often have added fat and sugar to compensate for lost flavors, and by eating them you may not lose the weight you hoped for. Even though the gluten-free section is larger than it was the past, it’s still small compared to the rest of the grocery, and why buy prepared foods when all those nutrition-packed colorful whole foods like vegetables and fruits beckon?

The GF items on the menu at restaurants can also 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 gluten.”

In this double-blind clinical study of GAWC (gluten avoiders without celiac), actual symptoms when gluten was reintroduced ranged from 10% to 40% of patients. All the others had been avoiding gluten unnecessarily.

Here’s a provocative article about how our possibly mistaken attitudes about gluten are ruining our relationships with food. I’ve not read The Gluten Lie referred to in the article but am intrigued that the author is a professor of philosophy and religion and received his PhD at the University of Chicago Divinity School.

So where does this leave us? If every time you eat gluten you feel ill, and you’ve tested negative for celiac, you probably should be among the GAWCs and avoid it. If you can’t tell a difference, with or without, then your deprivation is unnecessary. If you need assistance with all this, our nutritionists can help.

Be well,
David Edelberg, MD

6 comments on “Controversial Diagnosis #5: Non-Celiac Gluten Sensitivity
  1. SMG says:

    This was an excellent, comprehensive and logical article. Thank you, Dr Edelberg. I am among the GAWCs and had the exact same conversation of “you’re not gluten intolerant – eat bread – it’s the staff of life!” with my primary care physician and a nutritionist. I now see an Integrative Doctor who listens to me and what my body tells me. I have been following a pretty restricted diet (I actually feel better being completely grain-free), and whenever I start to think I’m crazy and am exposed to something I’ve eliminated I react. There is wisdom that God implanted in our bodies – we have to fine tune our hears to hear it.

    Thank you for your excellent website. It is a treasure trove of valuable resources and information!

  2. Elizabeth Wolszon says:

    Learned from a WholeHealth nutritionist of the link between gluten and my Hashimoto’s thyroid autoimmune disease. Didn’t really want to give up gluten, so I checked the studies. Sure enough, they were credible. After a year off gluten, my thyroid antibodies were significantly lower, my Gerd was virtually gone and I was off a medication for the Gerd. Since I don’t like a lot of the gluten-free baked goods, I skip them. And I cook a lot more. So my diet is much healthier. But it does make you a more annoying dining companion. And I run into non-believers who think it’s a fad.

  3. Imran says:

    Hey Dr E,
    Have you looked at the studies that claim gluten sensitivity is actually the nocebo effect? Here one and I recall reading about another where 90% of the participants misreported their food as containing gluten or not via there believed symptoms.

  4. Carita Walejeski says:

    Great article. I am part of the GAWC community as well. However, in my research I found that European wheat does not cause me any reaction. I traveled to Italy and gave it a try. Nothing, nada! Turns out Italy does not allow use of GMO wheat nor pesticides. They also use more ancients grains. In my case, I’m sensitive to how we in the USA manipulate our crops. My wheat now comes from Italy or Germany only!

  5. Lisa says:

    Diagnosed with NCGS in 2011 following a review of my health history and lab tests by a naturopath. Diagnosis was confirmed by testing through Enterolab. Diagnosis continues to be strongly supported by my gastroenterologist (despite a negative genetic test result for celiac; I’ve had two inflammatory bowel disease flares confirmed by colonoscopy in 18 years, yet thanks to the specific carbohydrate diet, I’ve only had those two flares; my colon is healthy and disease free 99% of the time). Re-diagnosed with type 2 diabetes in 2015, I don’t see myself returning to eating wheat, rye, or barley because the list of reasons to not eat these and other grains grows longer each year: glyphosate, additives to wheat flours, autoimmune diseases or food sensitivities caused by intestinal permeability or “leaky gut”, fungus, high glycemic index, etc. When discussing grains, why limit the conversation to NCGS alone? With the exception of high blood glucose levels I experience eating sugars, grains, and starches, I suffer no known consequences eating or not eating wheat. But, I’m in my late 50’s now. Why chance it? I don’t think the author of The Gluten Lie “gets” the reality of living with chronic diseases, and I think his book has caused far more harm than good. Why promote it by mentioning it, even linking to it? I’m not going to allow this author to bully me into eating wheat. And when it comes to grain flours, most people don’t know this but 1 in 2 adults in the US now have pre-diabetes or diabetes, an epidemic driven, I believe, by highly addictive sugars and flours that have been stripped of their fiber and nutrients.

  6. JoAn says:

    Carita,
    How do you get wheat from Italy?

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