I Wish I Didn’t Know That

(December 20, 2013) Hear the audio version

I was still in my jammies one morning in September when I received a chirpy “Your 23andMe Results Are Ready!” email from the Mountain View personal genetic testing company. A couple of clicks and password led me to a chart showing health risks identified by the spit test I’d sent in. Scanning quickly, I saw that I had more than three times the risk of developing celiac disease. No surprise there, as my daughter has it and I already knew I’d given her the gene. The report said I’m also at risk for other autoimmune diseases. I knew that too.

What set my heart racing was the Alzheimer’s Disease risk line. Did I really want to see that result? 23andMe asked.

Huh. My husband didn’t get that prompt.

Did I? Why, Pandora, I asked myself, would you have paid $99 if you did not want to open the box? I know you’d hoped to find out you didn’t have an Alzheimer’s gene. Now what are you going to do?

Of course I kept going. The next page looked like a terms-of-service agreement, and I read it just about as carefully before agreeing. Turns out I do have one copy of the APOE4 variant, which is “associated with an increased risk of Alzheimer’s.”


Was I the sort of person the FDA was thinking about when, two months later, it sent a warning letter to 23andMe ordering it to discontinue marketing DNA test kits because they’re medical devices? That saliva kit certainly led to medical results that I still can’t decide I’m glad to know. Through my own research, I learned I can substantially lower my risk of developing Alzheimer’s by exercising. So I’m even more diligent about taking brisk walks in the foothills and going to the gym twice a week for resistance training. But would I have benefitted from an across-the-table genetic counselor? You bet. My $99 didn’t cover that. If we’re going to be the genetic pioneers 23andMe says we are, it’s important to remember that the 21st century wilderness can be overwhelming, calling for more than a simple Internet connection.

With a Perspective, I’m Debbie Duncan.

Gluten Free-for-All

(July 25, 2013) Hear the audio version

Have you been hearing the term gluten-free more lately? Well, I have, and I don’t think it’s only because my daughter was diagnosed with celiac disease 21 years ago, and therefore follows a strict—and I mean strict—gluten-free diet: no wheat, barley, rye, or contaminated oats … ever. Even a crumb makes Molly violently ill. Long-term exposure could give her cancer. As her activist mother I’ve been promoting awareness about gluten and celiac disease for more than two decades. I thought it helped keep Molly safe and healthy.

Now I’m not so sure. Gluten-free is no longer an obscure food restriction; it’s a full-fledged fad and diet trend. Celebrities trumpet the supposed weight-loss properties of going gluten-free. It’s baloney. There are thousands more gluten-free products available than 20 years ago, but few would be considered “diet” fare. Even restaurants have jumped in. Ironically, that has made it harder for celiacs to go out to eat.

Why? Chefs used to come to our table when Molly ordered her meal. Now almost all servers know about gluten, but they underestimate its seriousness for celiacs. Awareness has led to complacency. In the last year Molly has gotten sick after eating at restaurants she used to be able to enjoy.

A national pizza chain promotes its gluten-free pizza, but it’s not safe for celiacs because of cross-contamination: all pizzas are made in the same kitchen and sliced with the same knives. Talk about exploiting a trend! As Dr. Stefano Guandalini, president of the North American Society for the Study of Celiac Disease said, “A product is either gluten-free or it is not.”

After extensive pressure from the celiac community, in February the FDA sent to the White House’s Office of Information and Regulatory Affairs a new set of rules dictating what foods can be labeled gluten-free. Yet nothing has been done about it.

Which is is too bad, because after the gluten-free bandwagon pulls out of town, there will still be millions of true celiacs in this country who could use the government’s help staying safe and healthy. It’s time to act, Mr. President.

With a Perspective, I’m Debbie Duncan.

Life Without Gluten

(February 7, 2012) Hear the audio version

 Twenty years ago this month I first heard the word gluten, as in, “Ask your daughter’s doctor to check for gluten intolerance.” It came from a colleague of my husband’s down south in response to our pre-Internet SOS call for ideas why our 20-month-old daughter was wasting away before our eyes, and the eyes of the 54 physicians who had studied her malady over the previous three months. A biopsy taken four days later confirmed that Molly’s malnutrition was indeed caused by undiagnosed celiac disease. Right away she went on a gluten-free diet: no wheat, barley, rye, or (in those days) oats. Corn and rice were her grains of choice. We were told she’d never be able to have pasta, pizza, or decent-tasting bread, cakes or cookies.

But she would live. Food was, and still is her medicine. That’s one of the few things that hasn’t changed for celiacs in the last 20 years. Yet I refused to doom my kid to a diet of mushy pasta and doorstopper bread. I went to work finding and developing recipes the entire family would enjoy. I incorporated into my baking new whole-grain flours, some of which were old-world: sorghum, amaranth, brown rice, quinoa, teff, flax, buckwheat. Mercifully, gluten-free products started showing up on supermarket shelves, not just in specialty stores. Gluten-free bakeries opened. Restaurants offered gluten-free menu items. And gluten-free products were the hottest trend at last month’s Fancy Food Show in San Francisco!

Yet for Molly and the other one in 133 Americans who have celiac disease, or the even larger percentage of the public with a degree of gluten intolerance, gluten-free is not a fad, trend or choice. “Cheating” puts celiacs at increased risk for developing other autoimmune disorders and even cancer. Any cure for celiac disease, such as a pill containing an enzyme to break down the protein in gluten, is proving more elusive than we thought 10 years ago. But it shouldn’t continue to be so difficult for doctors to diagnose celiac disease—many adults still suffer symptoms for years.

It’s not a scary diagnosis. And there are some pretty tasty gluten-free brownies out there.

With a Perspective, I’m Debbie Duncan.