Granny's Notes - the writing of Sue Gerard

It was difficult to find information for celiacs

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 that when I was about 75 years old. Here’s one man’s story - and more of my own.

Bob was born in a foreign country and had stomach distress as a toddler. Doctors there, and in the United States later, treated him for 40 years - for ulcers! Then his wife Betty read a few short paragraphs about celiac sprue, or CS, in an out-of-date magazine. Bob’s doctors didn’t know CS, so he and Betty went to libraries for help. She suggested that Bob try not eating anything containing gluten: wheat, oats, barley and rye. It was hard to pack his lunch without the usual two full sandwiches plus cake, pie or cookies for dessert.

After several weeks, scientist that he is, Bob went back to the two-sandwich lunch - and was convinced that he had celiac sprue. To be certain, he underwent an intestinal biopsy, which verified their self-diagnosis. Since then, a blood test has been devised, and the biopsy is not necessary in many cases.

Bob and Betty found only an out-of-date book by a British author who wrote about wheat and said, "oats, rye and barley also contain gluten."

Twenty-two years ago he found the first real information about CS! He bought a book with 150 pages from a Celiac Association office. Betty told me, "New labeling laws have made a big difference in the number of Bob’s ‘bad’ days."

Here’s my story: 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 and kept losing weight. Months later I was 30 pounds lighter and was ravenously hungry between meals. The doctor said, "Then leave off wheat, oats, barley and rye." I was to eat nuts to help make up for the lack of whole grain. Corn and rice are the only grains I can digest.

The next step was to spend long hours in the grocery store reading fine print and marking off everything on your grocery list that contains "modified food starch" monosodium glutamate, or MSG - almost all canned soups, and all foods harmful to celiacs. I thought rice-crispy candy would be my only special dessert, but it took weeks of a minor upset to discover that marshmallows are flavored with barley! I chose tapioca pudding for dessert. There is no medicine and no treatment to make villi grow back after gluten has destroyed them - time and strict adherence to the no-gluten diet are your healers.

It takes months or years for intestinal walls to heal, the villi to grow back and nourish the body and for the celiac person to gain weight. Celiac sprue! It’s an inherited disease, and it’s in many parts of the world. It causes vitamin deficiency, weakness, abdominal cramping after meals and diarrhea; some celiacs report a relationship with debilitating headaches. A few celiacs have another unusual ailment called "dermatitis herpeteformis," an "undeniable itching" on various spots on the body; it seems to relate to iodine, including iodized salt. John Despain, 2021 Cherry Hill Drive, has answered my questions about that.

The University of Maryland is doing research on herpeteformis, and the good news is that celiacs help people who experience similar symptoms to their own. There’s a well-established celiac organization in Omaha, Neb., that has literature and answers to our questions at P.O. Box 32100, Omaha, Neb., 68131, or

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