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People who think they might have celiac disease can experiment with not eating gluten, but Green says it's better to be tested. After all, why avoid wheat for a lifetime if it's not necessary? The gold standard of diagnosis requires a biopsy of the small intestine. That way doctors can check for the inflammation that occurs when people with celiac disease eat the protein, which their bodies see as a foreign object. But first, patients typically take a blood test that looks for the antibodies the body creates in response to things that irritate the small intestine and damage the villi that are crucial to absorbing nutrients.

When patients lay off gluten, their intestine should heal and symptoms should go away, says Kupper. But following a gluten-free diet is a challenge, especially for kids. In the McConnell family, it requires planning. "At birthday parties, either I eat a giant dinner before it, or my mom buys a gluten-free donut for me to bring," says James Jr. It helps that his mom and dad are also on the diet. The disease often runs in families, so doctors tested James's mom, who had been misdiagnosed as having Crohn's disease but turned out to have celiac disease, and his father, Jim, who is simply gluten intolerant. The family says their efforts have paid off—on their fruit- and veggie-laden regime, James grew more than an inch a few months after he began the diet, and the whole family feels better than ever, says Diane.

"It can be a very healthy diet," says registered dietitian Dee Sandquist. After all, substitute grains such as quinoa are filled with more nutrients than white, refined flour. For some people without celiac disease, a gluten-free diet may make them feel better through the placebo effect, says Sandquist, and of course simply eating fewer cookies and pies can contribute to feeling healthier overall. But unlike foods made with wheat, many gluten-free products are not fortified with B vitamins, so those people who avoid the protein may want to take a multivitamin supplement.

For celiac suffers and gluten-free advocates alike, it's easier these days to find a variety of food options. Restaurants such as Outback and Carino's Italian are now offering items free of the protein. And household-name manufacturers are jumping into the game. Hain-Celestial markets a gluten-free line fortified with iron, folate, calcium and B vitamins. Anheuser-Busch offers a barley-free, sorghum-containing beer called Redbridge. And General Mills now sells gluten-free Rice Chex.

Food makers are eagerly awaiting an FDA rule on "gluten-free" labeling. "Once that goes through, we will see some of the big boys label gluten-free," says the Gluten Intolerance Group's Kupper. FDA spokesman Michael Herndon says coming up with a final rule is an "agency priority."

Alternatives to avoiding wheat include genetically modifying it to remove the genes responsible for the toxic fragments of gluten in it. But historically Americans have been leery of so-called "frankenfoods." Another possibility: a vaccine. An Australian group is working on one, but it is not in clinical trials. Researchers are also working on a pill that people with celiac disease could take before eating to help them digest gluten.

In the meantime, experts say the current gluten-free fad is unlikely to hurt anyone's health. It is, of course, generally good to eat fewer processed baked goods and more vegetables. Still, says Columbia's Green, those without a celiac diagnosis should be cautious about adopting the restrictive diet: "I don't think people should torture their children unnecessarily."

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Member Comments

  • Posted By: mimi262 @ 04/09/2009 7:32:05 PM

    wow! That was a very well put speech! I couldn't have said it better myslef. My mother actually sent me this article and as i was reading it I reaalized that some doctors are just complete dumbasses! I am on a gluten-free diet myself because i ahve eczema and my homeopathic doctor told me quite a few years ago that i should go on this diet. Anyway, I'm very glad that someone actually told these people the way it is.
    Thank you.

  • Posted By: adchappell @ 01/12/2009 2:05:42 PM

    "...torture their children unnecessarily..."!! So, I guess for fear of 'torturing' our children with autism by avoiding a FOOD, it is much better to let them suffer the intestinal pain and developmental regression that so many experience??!! It is bias, poorly writen articles like this that confuse and mislead people and families dealing with autism. It is true that some do not respond (and maybe not responding because there is something else that needs to be avoided - such as casin - as well to make it effective), but what about the THOUSANDS AND THOUSANDS of patients that have found real relief and improvement in overall behavior and attention when 'tourtured' with this diet?! I could think of a lot more 'torturous' things in life...like watching your autistic child fall deeper, and deeper into a black hole of nonresponsiveness, while 'experts' who know very little about a subject, print arcticles that are highly misinforming, and accuse parents of TORTURING their children in hopes of restoring FUNCTION and RESPONSIVENESS in their autistic child. My child went from 'not going to survive' to thriving on this 'tourturous' diet. IT SAVED HIS LIFE!!!! Lets keep in mind that this is a diet - food - not AIR! How much more tourturous is it for a CD, autistic or ADHD patient to avoid gluten than it is for a diabetic to avoid sugar?! If it works and it makes you feel better, why wouldn't you do it? It is just food! It's not like there are not other foods on the planet that are just as, if not more, nutritious and delicous to eat than gluten containing foods. If the diet shows no signs of helping, then don't do it. But don't write it off as bunk just because you don't have all the facts. So lets refrain from the extreams of tourture, and state the facts in an unbiased, NOT blown out of proportion, manner - PLEASE!!!

  • Posted By: jka8168 @ 01/11/2009 5:41:21 PM

    This article discusses the gluten syndrome as "celiac disease "only. See www.theglutensyndrome.net for the other side and supportive research. Some researchers insist the gluten syndrome can damage many many organs and tissues, and particularly the brain and nervous system. In some cases, the villi may be damaged and that subset is the one getting dx'd because the damage can be easily seen on endoscopy, or skin biopsy.

    Cellular mimicry is considered often a culprit in the gluten syndrome according to early research. (Meaning the anitbodies the body makes to various glutenins may misrecognize and crosslink with many body tissues due to "look alike" protein sequences in both the gliadin/gluten, glutenins, or wheat and the tissue.) This idea of celiac disease as just one small subset of the gluten syndrome fits the gluten syndrome community like a glove. Unfortunately, many more peopel have been misled by focus on damaged villi only than those who are helped with a positive dx.

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