No More Salvation for Celiac Patients

While about 15,000 people in Israel know they have celiac, there are probably more than double that number who do not know they have it.

For most of us, Passover is the festival of family, matzot and trips. But for 15,000 Israelis, Pesach is the festival of joy. It is the festival during which they feel that they personally have gone from slavery into freedom, a festival when they can finally eat everything, like any other person.

These are the people with celiac, an annoying and confounding disease. People who have it are sensitive to gluten, a protein that is found in many grains such as wheat, barley, rye and oats. Eating these grains causes an inflammation of their small intestine and harms its functioning. As a result, essential nutrients are only partially, and inadequately, absorbed. This can cause diarrhea, vomiting, anemia, reproductive disorders, short stature, joint problems and even malnutrition.

While about 15,000 people in Israel know they have celiac, there are probably more than double that number who do not know they have it. According to a study conducted by Rambam Medical Center in Haifa, in Israel, as in the rest of the Western world, about one in 150 people have the condition. That means there are an additional 35,000 Israelis who have not been diagnosed. They may believe, instead, that they have Irritable Bowel Syndrome - a common misdiagnosis for celiac, with which it shares certain symptoms - or that they are simply weak.

For years Passover was the only time when the major Israeli food manufacturers made products that were also suitable for people with celiac. Because of the dietary prohibitions against wheat flour they used potato starch or rice flour instead, which celiac sufferers can digest.

And so, for years, people with celiac waited impatiently for Passover, when they would stock up on pasta, cereals, soup powder, cakes and cookies - all made without wheat flour. They even developed special techniques for extending the shelf life of these products well beyond the dates recommended by the manufacturers so that they could enjoy them all year round.

But two years ago - Pesach 2006 - something happened. A manufacturer was sued for the alleged presence of gluten in a product labeled as made from potato starch. Apparently a minute quantity of matza meal (which of course is made from wheat) got into the product. As a result, the manufacturer decided to print a warning on all its products stating that they may contain gluten, in order to avoid similar suits in the future.

This year, many other food manufacturers decided to follow in its footsteps with a warning stating that their kosher for Passover products might contain gluten - in a bid to prevent legal action. And so, this year while there are many products that are kosher for Passover and which are made from potato starch or rice flour and thus should be suitable for people with celiac, the latter cannot eat them because there is no express promise from the manufacturer that the product is gluten-free.

Thus it transpires that instead of Passover continuing to be a festival of joy for those with celiac disease, this year it has become a festival of anger and frustration. Not only is it now impossible to stock up with goods for the entire year, it is impossible even to buy chocolate for a child with the condition because it too says "may contain gluten" - even though no flour whatsoever is used in making chocolate. The manufacturers prefer to "play it safe." It's easier that way.

On the face of it, we are talking about a mere 15,000 people who have been diagnosed with celiac disease, but in fact the potential market is much larger. Families with one gluten-sensitive child buy and make gluten-free products for the sake of efficiency, or out of consideration for that child. It should be noted that because gluten-free products cost more than their "regular" equivalent, the monthly food budget for a family with a celiac sufferer is several hundred shekels more than for a "regular" family.

There are countries that take this into consideration. In Denmark, people with celiac receive a special monthly stipend. In England they receive a doctor's prescription for a certain quantity of food. In the United States and Canada they receive tax breaks, and in France they get a monthly reimbursement for expenses. Here in Israel there is nothing, or next to nothing: Families on income support receive an additional NIS 95 per month as a "celiac grant" when applicable.

There is yet another annoying part to this story. There are manufacturers who do not produce gluten-free products for the local market, but only for export. And when they do, they thoroughly clean the production lines - something they are not prepared to do for the locals. From their point of view, it's the poor of some other city, not their own, who come first. And we are talking about manufacturers who speak loftily about social responsibility and involvement in the community.

Therefore, when on Saturday night we ask, "Why is this night different from all other nights?" we should remember that for people with celiac the answer is rather sad: "This year, they don't care about us."