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Long-term care and celiac disease: Nancy’s family shares her journey.


Nancy, Age 90

Nancy’s journey began about 25 years ago when she got so sick for months that her daughter insisted she see her family doctor immediately as she had lost a lot of weight and went down to 90 lbs. At that Dr. visit, she was initially handed a prescription for Ensure to help put weight on. Her daughter was furious when the doctor didn’t try to diagnose the issue of sickness, diarrhea and weight loss so she and Nancy both went to the hospital and insisted that she be admitted for testing. Within hours it was diagnosed that she was celiac and highly sensitive.

“The emergency room doctor stated that she wouldn’t have lasted a few more days if she hadn’t been diagnosed.”

– Daughter Kim

— Nancy

Nancy never complained

Fast forward 25 years and Nancy at age 90 agrees its time to move into a nursing care home. Nancy was happy to move in and begin the next stage of her life. During the first three years, Nancy never complained about the food or illness. Then one day while strolling outside in the garden, Nancy accidentally fell, and the fall fractured her pelvis. While Nancy was bedridden, she ate in her room for lunch and dinner daily. Her attendant often went down to get her meals. It was around this time that Nancy began to have severe diarrhea daily before bed and during the night. The caregiver had to keep buying diapers and change pads etc. The family started looking at the menu more closely and found that the menu had changed and no longer listed gluten free/celiac options. On speaking to the Director, she advised a new chef was on board as the previous one was just covering while they hired a new one. Once Nancy was able to go down for her meals in a wheelchair (mid July) she had to ask at every meal what she could have and always got the salmon, vegetables, and applesauce for dessert.

“The whole food issue caused Nancy much stress as she accepts diarrhea as a daily thing now and is very embarrassed. The stress has caused her to have high blood pressure and is now on a low dose of blood pressure medication.”

“Early November and for the past month, they seem to have made some adjustments, however; we still have no response from the Director on a follow up meeting request nor the head nurse reached out to us. After complaints, the gluten-free notations are finally back on the menu. The new chef is thankfully aware of celiac disease. The origin of the original gluten contamination was never investigated or found.”

– Submitted by Kim and Chris – Daughters of Nancy

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