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I'm eating gluten-free, but I still have gluten symptoms. Why am I getting sick?

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Updated March 29, 2014

Written or reviewed by a board-certified physician. See About.com's Medical Review Board.

Question: I'm eating gluten-free, but I still have gluten symptoms. Why am I getting sick?
Answer:

You're probably getting glutened from your "gluten-free" foods. Sadly, gluten-free on the label doesn't mean "contains absolutely no gluten," as your gluten symptoms will attest.

In the United States, there's currently no rule governing what can be called "gluten-free," although the U.S. Food and Drug Administration has proposed a standard calling for gluten-free foods to contain fewer than 20 parts per million of gluten.

Medical research has shown that many people with celiac disease, but not all of them, can tolerate a so-called "standard diet" with products averaging 20ppm of gluten without winding up with major symptoms or additional intestinal damage. That "standard diet" would include gluten-free replacements for typical gluten-containing foods, such as bread, cereal and cookies.

Twenty parts per million is a minute amount of gluten (see this article on How Much Gluten Is Too Much? to see how small it really is). But even though it's tiny, 20ppm may be more than enough to make you get gluten symptoms.

Gluten Sensitivity Varies Among Celiacs, Gluten Intolerant

People with celiac disease and gluten intolerance seem to have dramatically varying degrees of sensitivity to trace levels of gluten. Some people can eat foods manufactured on machinery also used for gluten foods without getting gluten symptoms, while others get symptoms from almost every processed food, especially from grain products, which are at high risk for gluten cross-contamination.

I fall on the sensitive side of the spectrum -- for example, I get gluten symptoms from virtually all gluten-free flours.

In order to consume baked goods with gluten-free flour, I have to carefully choose and purchase whole grains and then sort them to remove any gluten grains (and yes, I've found wheat and barley grains in many different kinds of gluten-free grains). I then wash the grain (with gluten-free soap) and grind it into flour myself. I eat a mostly grain-free diet in part because of the ridiculous amount of time it takes to do all that!

What Can You Do If You Get Symptoms From Gluten-Free Foods?

If you find yourself eating all gluten-free products and you're still having celiac disease symptoms, you should check with your doctor to make sure there's no other health condition potentially causing your continuing symptoms.

Once you've ruled out other potential causes of your gluten symptoms, you can take several steps to get symptom-free.

  • First, try eliminating all grain products from your diet, even if they're marked gluten-free. Some celiacs do best on a grain-free, low-carb diet (I'm definitely one of them, and you may be too). About.com's Guide to Low Carb Diets can get you started on a healthy, grain-free diet.

  • You're on the right track if your symptoms diminish grain-free. But if you're still experiencing nagging problems even while eating grain-free, try removing all processed foods from your diet -- everything that includes more than one ingredient or comes in some sort of packaging.

If you stick with fresh produce, fresh meats, nuts, eggs and fresh dairy (assuming you're not lactose intolerant and can tolerate dairy products), you'll have the best chance of minimizing gluten cross-contamination and getting rid of lingering gluten symptoms.

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