I feel fortunate to talk about Celiac Disease in the month of May as May is Celiac awareness month.
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I do not have Celiac Disease. My mother did. The disease was diagnosed late in her life and there is a good reason why. I think of Celiac Disease less as a disease than as a syndrome, more on that later. So what is a celiac Disease? The answer is simple. Celia, more commonly known as villa, are small hairs located in the small intestine that absorb the nutritional value of food into the body. Yup, they are a vital link in the digestive process. Without them food is not digested. A person with celiac Disease literally has their villa sheared off by gluten.
My mother did not learn she had celiac disease until late in life. That in itself is remarkable. Typically children who were not properly diagnosed early in their lives died. My mother somehow managed to live, but she was considered to always be sick. Because food went through her gut rapidly, she was called honey bunch of stinkweed, by her brother and sisters. Doctors at the time, she was born prior to World War II, had no idea what caused her illness. The impact on her family was they converted to Christian Science, where doctors are shunned. My mother never converted.
My mother had enormous will power. That will power got her through life. She told me how when she was accepted at Smith College, the college told her that if she was sick, even one day she would be tossed out. She never took a sick day. I remember in elementary school, the doctor coming to visit her at home, (yeah doctors made house calls). I remember taking days off from elementary school to cook for my mother. I remember my grandmother coming to nurse my mother back to health. I remember the trips to the Florida keys in the winter so that my mother could bask in the warm sun. Yet, she had the will power to survive, graduate phi beta kappa / magna cum laude from Smith College, go to library school and get straight A’s, and work at both Duquense University and Williams College libraries. She also typed both my father’s PhD thesis and mine. Such was her immense will power.
She attempted to have many children, I don’t know if the number was seven or eight. I do remember as a child when she was pregnant. I was the only survivor. I was a fat and large baby. Healthy as can be. Today I am obese. I believe part of the reason for my obesity is that my body is better at receiving nutrition than my mother’s other pregnancies. I don’t believe her condition made my body that way, I believe that was entirely genetics. I do believe that if my body was not that way, I would not be alive today.
Unfortunately one of the symptoms of celiac disease is having very low folic acid in the body. One of the sources of folic acid is gluten. So doctors recommended my mother eat wheat and worst of all wheat germ. My mother also had to eat and eat and eat a whole lot of carbohydrates just to survive. Imagine having a weight problem and living with someone who was skinny as a rail and had to stuff themselves to live. Oh well, I eat too much also. I habit I have to someday break myself of or that I will die from.
My mother was in her sixties when she was finally diagnosed. She was sent to Tufts Medical Center for diagnosis. No Doctor House. The hospital put her on the cancer wing. I still have the poetry she wrote about other patients. Diagnosis was done by sticking a long tube through her mouth into her small intestine and performing a biopsy. My mother rapidly adapted to a gluten free diet and was healthy until she died of cancer.
Before World War II few were aware of Celiac disease. During the war the Nazis took all the wheat products from the Netherlands and children that previously died survived. When the allies dropped bread the children became sick again. The biopsy device was developed in the 50s. For more on the history see A Brief History of Celiac Disease. The good news is that today doctors are much more aware of the condition, diagnosis is relatively easy, and one can with effort eat a gluten free diet.