Long ago I read about celiac sprue in my Preventive Medicine textbook and immediately said to myself, "Don’t get THAT!" But I did get it after I was 75 or 80 years old. I have avoided writing about personal health in these notes, but today I break that rule by telling Bob’s story - and my own. Bob’s wife recognized my name on the column and recalled something I wrote about this little-known disease that affects about 250 out of 1,000 people.
Bob was born in a foreign country and had stomach distress as a toddler. Doctors there, and later in the United States, treated him for 40 years, usually for ulcers. Then his wife, Betty, read about celiac sprue, or CS, and suggested that Bob try not eating anything containing wheat. It was hard to fix a lunch without two full sandwiches and cake or cookies for dessert, but Bob’s condition was definitely improved. After several weeks, scientist that he is, Bob went back to the two-sandwich lunch - and was fully convinced that he had celiac sprue. To be absolutely certain, he had an intestinal biopsy that verified his self-diagnosis.
Bob’s doctors didn’t know about CS, so he went to libraries for help. He found only an out-of-date book by a British author who wrote that oats, rye and barley also contained gluten. Twenty-two years ago, he found the first real information about CS. He bought a book with 150 pages from a Celiac Sprue Association office. Betty said in her e-mail that "New labeling laws have made a big difference in the number of Bob’s ‘bad’ days."
Now, for my story. Six or eight years ago, I told my doctor, "I’ve lost 6 pounds, and I wasn’t even trying." We thought it might be a reaction to dairy products, so I eliminated those. Months later, I had lost a total of 30 pounds and was ravenously hungry between meals. The doctor said, "Then leave off wheat, oats, barley and rye." I was to eat nuts to make up for the lack of whole grain. It sounded easy.
Neither he nor I realized how difficult that would be. I was soon happy to stick to a fruit, fresh-vegetable and meat diet because there was no stomach pain and intestinal distress.
Corn and rice are the only grains I can eat. I eat no regular bread, cookies, crackers, pies, cakes or pancakes. So I bought corn flakes and rice puffs and went home with marshmallows to make rice treats. But horrors! All three are flavored with barley! I know of no dry cereal we celiacs can eat. Also eliminated for our diets are canned soups, olives, pickles and all things in distilled vinegar. Most meat cold cuts contain MSG or other offending material.
From one of the CS associations we learned that gluten destroys the intestinal villi that pick up nutrition, and once those little things are only a small bump, swallowed food passes without nourishing the body. The only treatment is to spend months mastering the celiac diet. Months or years later, the intestine wall finally heals, the villi form again to nourish the body, and the celiac person gains weight.
Celiac sprue - don’t get it. No medicine helps. It’s in many parts of the world, and its diet is more healthful than a Danish pastry for breakfast. A few celiacs - and no others - have a reaction to iodized salt. The two can make life pretty miserable, and I might tell you about that on some distant Monday.