Ulcer might have been better fate than celiac sprue diagnosis

Celiac sprue is an illness I first heard about in a 1940 seminar at the University of Missouri-Columbia. I scribbled this warning on my notes: "Celiac Sprue. DON’T GET THAT!"

Thirty years later I had sudden, constant problems with digestion. I had several conversations with my doctor, had allergy tests and tried lactose in milk. There wasn’t much left to investigate except "ulcers or stomach distress."

My doctor said, "Try leaving out all things made with wheat, oats, barley and rye." Good! I tried that, and in less than two weeks we knew that I had celiac sprue. That was a relief. Then came the hard lesson to learn: There is no medication, surgery, miracle drug or other treatment! Only strict adherence to a new diet would help this reluctant celiac!

Sprue means "defective absorption of food." It’s a genetic disease, but we knew of no relative who ever had such a thing. Following a strict celiac diet is the only choice. Celiac sprue was not well known by doctors, nurses, dietitians or chefs. Celiacs help other celiacs! Doctors hadn’t seen this strange disease, but it’s worldwide. Now there is more information on celiac sprue.

Students at the University of Maryland’s medical school are motivated to do something for CS victims because they know a little girl who has it. Mothers of celiacs exchange recipes and order special ingredients by mail or from the Internet. It formerly took years to diagnose CS, but that’s changing. In a Maryland study of 13,145 people from 32 states, celiac disease was found in one out of every 133 people! Finnish studies proved that oats were a grain that did not cause CS, and I now enjoy oatmeal each morning - for the first time in 12 or 15 years.

Even crumbs of wheat, barley or rye will upset a celiac’s digestion. I am sometimes served wonderful food with no grain included, so I keep a food locker stocked with nuts, popcorn and sweet rice treats to have at least a small portion of the grain I need daily. Normal people get five servings of grain a day in bread, rolls, crackers, pies, cakes, etc., which celiacs cannot eat. The grains are wheat, barley, rye, corn, oats and rice. I can have only corn, oats and rice.

Celiacs share tips and recipes with other celiacs. Example: Clovers and other Columbia grocery stores stock frozen rice and almond bread that is gluten-free. Clovers and other health food stores also offer other choices for wheat substitutes. It’s easy to go wrong in this diet.

Beware! Read labels! Barley flavors most marshmallows and almost every dry cereal. Do not use items containing barley. Many foods contain the flavor enhancer MSG. Turn and run! That "G" in MSG is for gluten - the basic trouble-maker for celiacs. I cannot use any canned soup or any tasty dish that includes a canned soup. Some celiacs can have soy, but not I. Most of us cannot use canola; it upsets stomachs. Some things have to be learned the hard way: I didn’t tolerate the Thanksgiving cranberries shipped from bogs in the far Northeast to Columbia. Labels are supposed to help, but we don’t get to read very many of them.

The sad fact is that I am a celiac. I’ll have celiac sprue for the rest of my life, and it is known to have shortened the lives of people younger than I. Maybe I’d have been lucky to have had "stomach distress or an ulcer."

For additional information, contact your doctor or one of these organizations: Gluten Intolerance Group, 5110 10th Ave. S.W., Suite A, Seattle, Wash., 98166-1820; e-mail: info Celiac Sprue Association USA, P.O. Box 31700, Omaha, Neb., 68131-0700; (402) 558-0600; e-mail: celiacs@csa.org; Web site: csaceliacs.org.


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