Mary lived with celiac disease for years without a diagnosis. Interestingly, she always disliked pasta, was not a big fan of bread, and tended to eat rice and corn based cereals. However, the disease still took its toll on her body.
“Aside from always being quite petite and having trouble gaining weight, my major symptoms included migraines, bloating/cramping and a neuropathy in my right arm. Although I saw numerous specialists (neurologists, rheumatologists, various surgeons and even a psychologist) about the migraines and the neuropathy, no one ever suggested celiac disease might be the cause. Part of the treatment I underwent for the neuropathy resulted in the loss of function of my right arm, which I gradually regained with intense physiotherapy. I required special accommodations through the last few years of high school and all of my university to be able to handle writing tests and exams. I had many, many tests, including several nerve conduction tests, ultrasounds, MRIs, and a variety of tests requiring the ingestion of radioactive cocktails and large expensive machines.”
Mary has several relatives with celiac disease. Her mother was the first person to be diagnosed, and after doing some research, concluded that Mary should be tested as well. Mary was diagnosed with celiac disease based on blood tests and biopsies, and she had a second biopsy done several months later to confirm healing.
She has been gluten-free since 2003. Being on a gluten-free diet improved all her symptoms and the neuropathy disappeared! She noticed that she became much more sensitive to gluten after she stopped eating it. Even trace amounts would cause vomiting and other gut issues.
Mary’s biggest challenge has been eating out. She has found that it requires advanced planning. One of her most memorable experiences was when she was asked, "Just to confirm – gluten-free means you can’t eat any meat, right?"
Eating with friends and family can also be complicated. She has found that few people have any concept of how to avoid cross contamination. Then it is hard when people try to accommodate you, but end up making an error. She says, “The pressure to eat it anyway can sometimes feel overwhelming.” She tries to explain in advance and have her own substitutes on hand.
Looking on the bright side, Mary says there is a lot more support for celiacs than there used to be, there are more foods and mixes available, and the gluten-free diet encourages healthy eating.
Mary reminds us, “It is currently recommended that first degree relatives should all be tested for celiac beginning in childhood and repeated at intervals over a period of some years, regardless of symptoms.” See this article, the University of Chicago site, and the Columbia University Medical Center site.
To learn more about Mary, visit her web site, Parenthood.