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Six Commonly Missed Diagnoses: Gluten Sensitivity

Post 06/04/2012

The current guesstimate says roughly 20% of the population are intolerant to gluten, with about 1% of that group having a potentially fatal intestinal condition called celiac disease. The remaining 19% or so are classified as having “non-celiac gluten sensitivity.”

Despite the dozens and dozens of medical and psychiatric conditions linked to gluten intolerance, it’s also guessed that less than 2% of all gluten-sensitive individuals ever learn of their diagnosis. With data like this, you can appreciate how even an organization as conservative as the American College of Physicians once voted celiac disease the most commonly overlooked diagnosis in internal medicine.

Let’s talk about celiac disease first
Why a person’s immune system starts reacting against gluten grains (wheat, rye, oats, spelt, barley, triticale, kamut) and gluten-containing foods (omnipresent in packaged foods) is unknown, but the susceptibility does appear to run in families. In celiac disease, your immune system creates antibodies against gluten and it’s these antibodies, along with exposure to the grains and other sources of gluten, that damage the cells lining your small intestine. This is quite dangerous because the small intestine is where you absorb the nourishment required for your entire body to function. As your small intestine fails to absorb nutrients, you slowly but steadily become malnourished. The process can take years, and in fact the average person with celiac has symptoms for 11 years before it’s diagnosed.

Over those 11 years the main symptoms are digestive (bloating, gas, poor appetite, chronic indigestion, changes in bowel movements), but you might also develop a variety of seemingly unrelated symptoms (depression, fatigue, skin rashes, hair loss, weight loss, muscle cramps, easy bruising, changes in periods) related to being unable to absorb specific nutrients. I remember a patient several years ago who’d been diagnosed with anorexia nervosa because her main issue was that she just “wasn’t hungry,” even though she knew she was dangerously underweight. I was one of several physicians who missed her actual diagnosis, but in the end she did well once an alert gastroenterologist checked her for celiac disease.

One reason it can take so long to diagnose celiac is that testing is somewhat complicated. Although now there are simple and generally reliable blood tests to screen for it, the gold-standard diagnostic test is taking a biopsy of the 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 through which the 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 completely eliminated, your intestine heals, malabsorption reverses, and your health is restored.

Non-celiac gluten intolerance
Far more common (remember, almost 20% of the population) and more frequently overlooked than celiac is non-celiac gluten intolerance, a completely different condition.  The reason it’s not identified by physicians is our 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. 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.

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 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.

Dr. Braly points out (and I very much confirm) patients who, by going gluten free, are able to discontinue medications that had been prescribed to keep gluten induced symptoms in check.  These 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 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.
  5. People with celiac disease need to give up gluten completely. Those with non-celiac gluten sensitivity are at less of a health risk eating small amounts of gluten, but generally feel best when they avoid it altogether.
  6. If you need help with the self-testing or going permanently gluten-free, schedule a visit with one of our nutritionists, Marla FeingoldSeanna Tully or Marcy Kirshenbaum.

Be well,

David Edelberg, MD

Leave a Comment

  1. Joanne says:

    Great review of the subject, refining the two gluten-reactive conditions better than I have previously encountered. Great idea about staying on gluten till the “gold-standard” biopsy has been done. Yet, I am still wondering about the infallibility of the “gold-standard” biopsy. I have previously read that even this is not 100% reliable as not every patch of the small intestinal wall may exhibit the defining indications. Thanks for the very insightful piece on this topic.

  2. Penelope says:

    I’m so glad you wrote this, Dr. E. I’ve been considering eliminating gluten for several reasons, but wasn’t sure what to think about the things I’ve read about celiac disease and/or sensitivity illnesses (including a recent tv news story saying that gluten sensitivity was very rare and therefore mostly hype). It certainly can’t hurt to try the elimination, and in my case I’m certainly hoping it will help.

  3. Barbara says:

    Great article. Most people that you tell that you have Celiac Disease, really don’t think it is a serious condition. Mine was found after losing 15 lbs., by a biopsy. It’s been about two years, but still have trouble attending lluncheons and dinner parties. I always feel like they are thinking,”here comes miss fussy britches again” She can’t eat this and she can’t eat that.”

  4. Caitlin says:

    According to The University of Chicago’s Celiac Disease Center, the anti-body test is only valid if someone is continuously on a glutenous diet. Going gluten-free anywhere around getting that test can alter the results. If you really suspect you have Celiac, get the antibody test before you go gluten free. The University of Chicago’s Celiac Disease Center has an event every fall where they offer free antibody screening.

  5. Barbara says:

    I agree with Barbara. I have had to stop going to luncheons. People don’t realize how many thing have gluten in them.they say, ‘Oh, just eat this or that THERE CAN’T BE ANY WHEAT IN THAT!!” LITTLE DO THEY KNOW THE PRICE i PAY IF i EAT THE WRONG THING. It is a constant battle to attend parties etc.

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