In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
No. Celiac sprue is not a well-researched disease. Most of what we know about foods that are safe and foods that are not is gathered from anecdotal evidence provided by celiacs themselves. There is a great deal of controversy about what affects celiacs and what doesnt.
Take, for example, buckwheat. Along with corn and rice, this is one of only three common grains left on the "safe" list for celiacs. However, some celiac societies have put it on the "unsafe" list and there is anecdotal evidence that some individuals react to it as they do to wheat. Yet a well-known specialist in grain research points out that buckwheat is more closely related to rhubarb than to the toxic grains, so if buckwheat is unsafe then any plant might be unsafe.
In considering anecdotal evidence for whether a food is safe or not, individuals must make their own choices, but each of us should clearly understand that anecdotal evidence is gathered from individuals with widely varied experience.
It could be that the "buckwheat flour" that a celiac reacted to was actually one of those mixes that combines buckwheat flour with wheat flour. Another possibility is that, since buckwheat and wheat are often grown in the same fields in alternating years, the "pure buckwheat flour" may have been contaminated from the start by wheat grains gathered at harvest. Yet another explanation might be that the buckwheat was milled in a run that was preceded by wheat or any of the other toxic grains, so the flour was contaminated at the mill. Finally, some individuals -- celiacs or not -- may have celiac-like reactions to buckwheat; they are allergic. Celiacs who are allergic to buckwheat may be easily fooled into believing they are having a gluten reaction. Or, it could be that some evolutionary trick has put a toxic peptide chain into buckwheat despite its distant relation to the other grains, but the odds against this happening are long.
As individual celiacs learn to live gluten-free, they must gauge their own reactions to foods, do lots of research, ask questions, and try to understand the many variables that may affect the ingredients in their food.
The following is a list of ingredients which some celiacs believe are harmful, others feel are safe:
Wheat starch is used in the some countries gluten-free diet because of the belief that it contains only a trace or no gluten and that good baked products cannot be made without it. In a laboratory, wheat starch purity can be easily controlled, but in most plants this is not always the case. Wheat starch is not considered safe for celiacs in these countries: United States, Canada, Italy.
For more information on this topic visit our Safe & Forbidden Lists.