The disease can show itself in childhood, when a child shows poor dental enamel development with many caries, stunted body growth, distended belly, possibly bowed legs, irritability and learning disabilities. Those not necessarily diagnosed with celiac but, instead with autism, Asperger Syndrome, ADD, ADHD and schizophrenia, have shown dramatic improvement on a gluten-free diet. It is not understood why some don’t show symptoms until their 50’s or even their 70’s. There is often a stress trigger, such as an operation, a birth, or an emotional trauma. It is thought that the introduction of wheat too early in an infant’s life can act as a trigger. Strangely, those born in the summer months have a 40% higher chance of triggering the gene. Celiac disease affects women more than 3-to-1 over men.

It was once thought to be an extremely rare disease. As late as 1993, doctors were taught that 1-in-4700 had the condition and, for this reason, they are often reluctant to consider this condition. Today, the estimate of rate of incidence ranges from 1-in-130 to 1-in-300. The highest rate of the disease occurs in the Irish, with those in the western part at rates of 1-in-80. Primarily a European disease, celiac is becoming more common in those of Asian and African descent, as they adapt to a western diet. The Co-op, with 58 employees, has three diagnosed celiacs, myself among them. There is much more consciousness of this debilitating illness in Europe, and Europe leads the world in research. There is very little research in this country because this disease is not pharmacologically treated. The only treatment is a lifelong avoidance of products containing gluten. There are a few university research centers devoted to celiac. The University of Chicago, University of Maryland in Baltimore and Columbia University in NYC all have centers for the study of the disease. Columbia University is holding Patient Education Day and Physician Education Day on Saturday, October 23^rd.. For more information, check the website: http://cumc.columbia.edu or call (212) 342-0251. They also have a day devoted to physician education, so call your doctors.

So how does one get tested to see if they have the condition? The current gold standard is the blood test for the presence of IgA, IgG and anti-tTG (antitissue transglutaminase) antibodies. Also standard is a biopsy via an endoscopy. However, if one has already been abstaining from gluten, then these tests are not necessarily reliable and may be needlessly invasive. Mt. Sinai Medical Center’s Dr. Hugh Sampson says that blood tests used to find food sensitivities should only be a guide. Dr. Kenneth Fine, himself a celiac, has been researching intestinal health and celiac for over 40 years and had found a number of celiacs are missed by these normal screening methods. He has found that the antibodies don’t necessarily show up in the blood, but rather show up at the site of the allergic reaction. He has developed a method of stool analysis that is three times more likely to show positive presence of antibodies than the blood test. The February 4^th issue of "Journal of Autoimmunology" stated that Italian researchers have developed a technique that may be even more accurate than Dr. Fine’s. Dr. Fine’s lab (Enterolab.com) also tests for the genes responsible for the disease. Unfortunately, his test is not covered by conventional insurance policies, but I don’t regret paying the price, and it finally proved that, indeed, something just wasn’t right and that it wasn’t in my head—it was in my genes.

Eating becomes a challenge, but going out even more so. As little as 1/8^th of a teaspoon of flour can cause the blunting of the villi. Reading the labels of everything one buys becomes an absolute necessity. There are many ingredients with hidden gluten, such as caramel coloring, natural and artificial flavorings, mono- and di-glycerides, modified food starch, TVP, hydrolyzed vegetable protein, to name a few. Shampoos, facial creams, even the glue on envelopes may have gluten. Forget about beer—it contains barley malt. Many medications have gluten in them as well, even tooth polish used by your dental hygienist.

Luckily, we live in a time where the gluten-free food category is among the fastest growing segment of the food industry. The Co-op has been carrying more and more choices for a gluten-free lifestyle. Listed below are just some of the newest items that we are carrying.

I found it very difficult to find books of much help in trying to educate myself on this disease. I finally found the best by far in Wheat Free, Worry Free by Danna Korn. It is only two years old, and she covers everything. She provides an easy-to-read guide to the whys and why nots of the disease, such as "The Top Ten Reasons Your Doctor Won’t Test You For Celiac" or "Complimentary Medicine: Unconventional Approaches Might Be Right For You". She talks about all the various tests. She takes you through the emotional states you go through once you are diagnosed and offers sound advice in chapters like "Deal With It, Don’t Dwell On It". She provides lists of foods to avoid and foods one can eat. She has pages and pages of resources: groups and organizations, testing laboratories, newsletters, cookbooks, websites, etc. It is an absolute must-have for any celiac or parent of a celiac.

There is a local Celiac Support group that meets quarterly at St. Peter’s Hospital in Albany, and it is called the Capital District Celiac Disease Support Group.