As more and more research shows the harmful effects of gluten, a protein found in wheat, many people are cleaning up their diets and going gluten free.

Although I recommend a gluten free diet to many of my patients, I often find myself feeling mortified when new patients tell me, “Oh, I put myself on a gluten free diet two years ago and haven’t looked back since.”

Why would an integrative physician lament that somebody went gluten free, you may be wondering?

Because they didn’t get proper testing done first to rule out Celiac Disease (CD). And that testing is not reliable when performed on a patient who isn’t eating wheat products on a regular basis.

But why is getting tested important, when you could just cut out gluten and feel better? Why waste the money and energy on testing?

Read on.

(Or, if you believe me that it’s important to get tested, skip to section 6.)

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1. Even Those Without Digestive Symptoms Can Have Celiac Disease

Celiac Disease (CD) is a genetically influenced autoimmune illness that the small intestine and the whole body. When those with CD consume gluten (a protein found in wheat, rye, spelt, and barley), inflammation in the small intestine leads to local destruction of the cells in the gut, which in turn compromises the body’s ability to absorb nutrients from food. This is why many with CD have anemia that doesn’t respond to iron supplementation. This localized destruction and irritation can also increase the proliferation of a type of cell known as a lymphocyte, thereby increasing the risk of lymphoma in these patients. [3,4,8]

Some of the commonly known symptoms of CD include reflux, constipation, diarrhea, bloating, and abdominal pain. But these “classic” symptoms are actually not as common as we once thought. In fact, 60% of those diagnosed with CD do not have the classic symptoms. [3,4]

The local intestinal inflammation and destruction also sets off a cascade of inflammation throughout the rest of the body, why is why many with CD can have no digestive symptoms but struggle instead with joint pain, skin rashes, osteoporosis, hypothyroidism, infertility (including difficulty conceiving, miscarriage, and low birth weight babies), and neurological conditions (like multiple sclerosis, peripheral neuropathy, epilepsy, depression, and even psychiatric problems). [1,3,4,5]

Plus: 88% of those diagnosed with celiac disease have no symptoms! This is referred to as “silent celiac disease.”[3,4,5] That’s right: you can feel absolutely average and still potentially have this disease. So why should you care? Check out section 3.

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2. Celiac Disease is Actually Quite Common

A common misconception about celiac disease is that it’s extremely rare. Unfortunately, however, it’s much more common than most of us realize: 1% of the world’s population is affected. That’s 1 in 100 people! And the risk jumps up to 10-15% (that’s 10-15 people in 100) for those with a first degree relative with CD. [2,4]

How many people do you know? How many friends do you have on Facebook? You know people with this condition – whether they realize they have it or not. In fact, only about 17% of those who have CD know it. [2,4]

And CD doesn’t just affect Americans, although America is where the gluten free fad is alive and strong. Actually, the U.S. has one of the lowest rates of diagnosis, meaning that we’re not catching all of the cases that are present. [2]

It’s estimated that the rate of CD is even higher in Finland (2.4%), Northwest India, North Africa, the Middle East, and China. [2,4]

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3. Celiac Disease is Serious. You Want to Know if You Have It. And if You Do, You Must Go Gluten Free.

Although sometimes it seems like ignorance can be bliss, when it comes to CD, ignorance can be death. As in: early death. As in: your risk of dying from any cause goes up by 400% if you have celiac disease and you continue eating gluten. [6]

Knowing your CD status is also important for preventing a number of illnesses. In particular:

• Those who have CD and eat gluten are at higher risk of developing nutritional deficiencies, and therefore osteoporosis. [3,4,8]
• Those with CD are also at increased risk of non-Hodgkin’s lymphoma. [3,4,8]
• Heart disease and cancer (both inflammatory conditions) were found to be 39% greater in people with CD and 72% higher in those with gluten-related inflammation in one study. [9]

Now, maybe you’re committed to going gluten free whether or not you have CD. Good for you! But you should still know your status, because going GF for general health and going GF because you have celiac disease are actually quite different.

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5. Management of Celiac is Much More Aggressive than Non-Celiac Gluten Sensitivity

If you have CD, you’ll have to be much more strict about what, where, and how you eat.

For example, somebody with CD can’t order sweet potato fries in a restaurant, because they’re likely fried in the same oil as the battered onion rings. A person with CD can’t take their “chances” with the miso soup in a Japanese restaurant. A person with CD can’t even share a cutting board with their spouse if their spouse prepares gluten-containing foods on that cutting board. A person with CD can’t work in a bakery, even if they don’t eat any of the pastries – even just breathing in the flour may be toxic to them.

A person with CD can’t start taking a new medication or supplement without first calling the manufacturer and confirming that no wheat germ or other gluten products were used in the manufacture of that medication. The same goes for toothpaste and cosmetics.

In other words: going GF because you have CD is hardcore!

Also, given the genetic link in CD, if you have this condition, you’ll probably want to pick up the phone and call your immediate family members and suggest that they get tested as well.

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Your medical management will also be different if you have celiac disease.

Some of the differences include:

1. You’ll likely be referred to a gastroenterologist for an EGD (upper endoscopy) to confirm the diagnosis and get a sense of how much damage has been done to the gut lining. [3,4]

2. You’ll need blood work every 3-12 months to check something called tissue trans glutaminase (tTG) – this will help you and your doctor determine if you’re having any gluten “contamination.” [3,4]

3. You’ll probably want to get a micronutrient panel done, to identify and then treat any nutritional deficiencies that developed as a result of the damage to the small intestine. [3]

4. You’ll likely start getting your bone density scanned earlier than most folks, since those with CD have an increased risk of developing osteoporosis (more so for those who don’t go on a GF diet). [3,7]

5. If you don’t start feeling better, your doctor may test you for other food sensitivities and cross-reactivity to help you feeling better faster. [3]

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You get a tax write off.

Besides the fact that your health insurance will be obliged to cover more of your specialty bloodwork and bone scans, you also get to write off medical expenses on your taxes. You can write off the extra cost of gluten free foods, of buying new cutting boards and cookware, and even of cooking classes!

 

6. Celiac Testing is NOT Reliable if You’re on a Gluten Free Diet

Most of the blood tests and even the small intestinal biopsy are only accurate if you’ve been eating gluten-containing foods daily for at least 2 months prior to getting the tests performed. [1,3,4]

This is one of the hardest things for a patient to hear when they find out a relative has recently been diagnosed with CD and they come to my office asking me for testing.

Once anybody goes gluten free, they feel better. Can you imagine cutting out a toxic food from your life, feeling fantastic, never wanting to touch that toxin again, and then being told you had to eat it every day for two months, knowing that you’re going to feel awful and gain wait in those painful weeks ahead!?

This is why I encourage many of my patients to get CD testing before they go on a gluten free diet.

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7. A Food Allergy/Intolerance Panel is NOT Celiac Testing

I also see many patients in my practice who have had various food “intolerance” tests performed, especially the Carroll test, the VEGA test, the skin prick test (usually done by an allergist), muscle testing (usually done by an applied kinesiology doctor), and the 96-food IgE, IgG, and/or IgA panels (usually done by an ND or MD).

Although many of these tests do screen for antibodies/reactions (and sometimes frank allergies) against wheat and other gluten-containing grains, these are not accurate tests for ruling out CD.

In other words: you could test negative (normal) for wheat or gluten on one or more of these tests, but still have celiac disease or non-celiac gluten sensitivity (NCGS). That’s why getting specifically tested for celiac disease is so important. [3]

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References and Gratitude:

[1] Yarnell E. Natural Approaches to Gastroenterology. 2nd Ed. Healing Mountain Publishing, 2010.

[2] Murray A, Rubio-Tapia A. Am J Gastro Jul 2012

[3] Guandalini S. University of Chicago Celiac Disease Center

>>>Much of the information shared here came from my amazing and talented colleague, Dr. Lisa Shaver. I was particularly inspired to write this piece during a lecture of hers that I recently attended:

[4] Lisa Shaver, ND. Updates in Celiac Disease and Non-Celiac Gluten Sensitivity. Updates in Naturopathic Gastroenterology. Presented at the National College of Naturopathic Medicine, Portland, Ore. March 2014.

[5] Steven Sandberg-Lewis, ND. Celiac Disease. Gastroenterology Course. Presented at the National College of Naturopathic Medicine, Portland, Ore. Feb 2012.

[6] Rubio-Tapia A, Kyle RA, Kaplan EL et al. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology. 2009;137 (1):88-93.

[7] D. Micetic-Turk Univeristy of Maribor, Slovenia.

[8] M. Eriksson et al., Int J Cancer. 2008 Oct 1;123(7):1657-63.

[9] Peter H. R. Green, MD. Mortality in Celiac Disease, Intestinal Inflammation, and Gluten Sensitivity. JAMA. 2009;302(11):1225-1226. doi:10.1001/jama.281.24.2344.

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