Wednesday, January 23, 2008


Ten years ago, I was stuffing my mouth with a piece of cake that my mom had baked for me when I got a phone call from my internist.

What he told me changed my life. He informed me that I had been confirmed as positive for having celiac disease. He advised me that, to be healthier, I would have to adopt a gluten-free diet, giving up eating anything made with wheat, barley, rye, or oats.

So much for the cake.

The following months—and years—proved to be a time of adjustment and recovery after ten years of wondering why I was feeling so sick and so very, very tired. I taught myself how to be gluten-free using the resources I could find back then: Jax Peters Lowell’s book Against the Grain, materials from the Celiac Sprue Association (CSA), and visits to support group meetings in New York City as well as Westchester. I also subscribed to the international celiac disease mailing list and did research on what was then called "the information superhighway," where there was much less information than there is now.

Much of the information was consistent, but there were inconsistencies, too. Was vinegar gluten-free? How about buckwheat and millet? What about distilled liquor, like gin and vodka? I figured I would sort through those questions over time. (The answers turned out to be mostly yes, yes and yes, and yes.)

In the meantime, I followed the policy of When in doubt, don’t. I started off on a very limited diet and added foods as I confirmed that that were gluten-free, phoning and emailing companies to get that information for myself. I also did my best to contact restaurants and caterers in advance of a visit so I could heighten my chances of being served safe foods.

So how have I done over the past ten years? All right, I suppose.

I was probably best at avoiding any intentional departures from the diet. I used various strategies to pull that off: I remembered how bad I felt before I went gluten-free, I told myself I would feel better by remaining gluten-free, and I kept myself from getting so hungry (and far away from gluten-free food) that I'd make a bad choice out of desperation. Basically, I accepted the limits of my medical diet and remained open to discovering new and delicious foods within those limits.

Still, I have to admit that I've accidentally gone off the diet. Most of the time that involved tiny amounts of gluten. When I was pretty new to the diet, I had a spoonful or two of a soup before I realized barley was in it and I put it aside. On a later occasion, I had one bite of a fish before questioning a restaurant yet again and finally finding out that, yes, there was some flour in it.

In another case, I was probably eating miniscule amounts of gluten on a regular basis. When I ate sushi, I had no idea that the tiny flying fish roe called tobiko was made with soy sauce until I read about it on the mailing list and confirmed it myself. After that, there was no more tobiko in my life.

Then there were the mashed potatoes at an organic restaurant downtown. Someone at New York magazine had emphasized how accomodating the place was for special diets (writing something like "Gluten-free? No problem!") so I went there optimistically only to find that the restaurateurs actually had no idea what the diet required. But they seemed receptive, so I wrote up a detailed gluten-free food preparation guide that I think they laminated and posted in the kitchen. (This was long before the establishment of GFRAP, the Gluten-Free Restaurant Awareness Program.) I enjoyed eating there on a number of occasions—learning that quinoa goes well with chili—but then visited with some gluten-free friends, one of whom quickly found out that the mashed potatoes were being made with a rice milk or soy milk with some barley enzyme in it. That wasn't supposed to happen at that restaurant, where I had started to take gluten-free awareness for granted! Eventually the place shut down, removing the option anyway.

Probably the most gluten I ate was somewhere in a cross-contaminated loaf of millet bread from Florida's DeLand bakery. Lots of people had said it was delicious but, holding true to the doubt dictum, I avoided the bread for years because of allegations that it contained gluten. However, eventually I felt healed enough to give it a try—two weeks before a doctor appointment when I would get my blood tested. I don't think I can always tell when I've eaten gluten, but after two weeks of this bread I did experience fatigue, grouchiness, and loose bowel movements. Then my blood test turned out to be positive for the first and only time since it had normalized during my first year on the diet. Later I heard that Disney (or somebody) had DeLand bread tested for gluten and found it to be contaminated. The bakery subsequently changed the marketing of its products so that fewer gluten-free people would be deceived, but that only happened after years and years of bad practices (and ill and confused consumers). Bad, bad DeLand!

Other than that, two other instances come to mind. Years ago a girlfriend and I made a detour on the way home from a vacation so we could try out a GFRAP restaurant where I ordered cake for dessert. I couldn't believe how "normal" the cake was, so I repeatedly asked whether it was really gluten-free, only to be assured that it was. Instead of eating all of it, I took it back home, ate some more, and finally checked with the restaurant one more time. I finally got through to the owner, who regretfully told me that I had been served the wrong dessert. (That restaurant is no longer on the GFRAP roster.)

Most recently, I went on a road trip to try out another GFRAP restaurant, Jules Thin Crust Pizza (JTCP), with two other gluten-free people. On our way back, two of us started to feel funny in the ol' abdominal zone. I followed up over the phone and found out that part of our order had not been gluten-free. As is my practice in this kind of situation, I suggested some ways the restaurant could avoid that kind of mishap and contacted GFRAP to let it know my feelings. I'm hopeful that Jules Thin Crust Pizza will do better in the future. Just remember to look for this stamp when you order gluten-free pizza there.

And I think that's about it for my dietary successes and screw-ups over the past ten years.

Of course, I didn't do it alone. Most or all of my experiences have been dependent on those around me, too—from acquaintances and loved ones to restaurant workers and caterers to people who create programs and do research and make policies that make it easier to identify and obtain gluten-free foods. I'm grateful to them all, and I'm also grateful to my internist and my current roster of specialists for helping me stay on my path to improved health.

Photo: David Marc Fischer


Ellen said...

CONGRATULATIONS on 10 years of gluten-free oh my how times have changed! You can really see the improvements over time with the increase in awareness and diagnoses. I look to you and your blog for thoughtful, and intelligent discussions on the many aspects of the celiac life, so I for one am glad we share this disease!

David Marc Fischer said...

Thanks, Ellen--that's very nice of you!

Erin S. said...

David, congratulations on your 10 years! Thank you for all you do for the Celiac and gluten-free community. Keep up the great work!

David Marc Fischer said...

Thanks, homegirl--you're the tops!