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Cynthia's Story

 
3/16/2011

I was diagnosed with celiac disease at age 64 in 2007. For years prior to this diagnosis, I had many typical and atypical celiac symptoms: stomachaches, headaches, dermatitis, irritability, constipation, tingling in arms and legs, fatigue and paraphasia- a neurological condition causing the misuse of words. I was seen be internists, gastroenterologists and neurologists who never tested me for celiac disease, even though my medical history indicated my father had the disease.

The diagnosis was the result of three “failed” colonoscopies. I can now look back at this with a sense of humor, but at the time it was embarrassing and frustrating. The damage to my intestine interfered with the cleansing preparation. My new gastroenterologist did further tests and made the diagnosis.

My symptoms began to disappear within a few months on the gluten-free diet. The diet was not difficult for me to follow, as I had frequently prepared meals for my father. He was diagnosed at age 68 and died 10 years later from complications of the disease after making a deliberate decision not to adhere to the diet. It was very difficult for me to accept his decision and just stand by and watch his health deteriorate.

Just 6 months after my diagnosis, I went into anaphylactic shock after eating cantaloupe for lunch. I have developed new allergies as a result of the change in my immune system; I am now allergic to fresh fruit, citrus and shellfish. I find the limitations from these food allergies more difficult to live with than the gluten-free diet.
The good news Is that I have lost 15 lbs; my skin is normal; I have only occasional headaches, infrequent stomachaches, no neurological problems; and I have tons of energy. I work full-time as a realtor and do volunteer work as well.

People often ask me how I can cope with all the food restrictions in my diet. I tell them it is definitely a challenge, but one that I can handle. The restrictions have created an opportunity for me to try alternative and healthier foods, as well as cook more creatively. My daughter is gluten intolerant and a vegetarian, and we share a lot of recipes.

A major benefit for me has been my affiliation with The Healthy Villi, a Greater Boston Celiac/DH Support Group. We have three annual  meetings with lectures for the newly diagnosed, cooking demonstrations and a large food emporium with more than 35 vendors offering samples of their products. I am now the coordinator for the emporium and see firsthand that gluten-free does not have to mean “taste free” or necessitate “living without” the foods we enjoy.

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