Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.
Julia's Story: Celiac Disease
At about 16 months, Julia’s mom began to notice a rash around her mouth. She would put lotion on it, but it did not get better. She figured out that it may be food related, and she took Julia to her primary care physician. Her doctor referred them to an allergist, and a skin test confirmed that Julia was severely allergic to peanuts, tree nuts, soy, and shellfish. She was required to wear a medical alert bracelet and have an epi-pen. As years went by, it seemed that Julia’s allergy list grew longer. Many fruits and vegetables caused Julia to experience throat irritation and hives.
She has been receiving immunotherapy through allergy shots since she was in elementary school in order to help with her outdoor allergies. These shots have also had an impact on some of her allergies with fruits and vegetables, as she has been able to re-introduce apples and bananas into her diet. She continues to re-test for her allergies every several years through skin testing and blood work to determine if there have been any changes to her allergies.
At the end of 2018, Julia began to notice unusual stomach symptoms. She had been experiencing stomach pain for a while, but she assumed that it was stress. In October, she experienced two nights of stomach pain along with some other symptoms. She decided to reach out to her primary care physician, and Julia had blood work done. Most of her blood work came back normal, but her doctor did a celiac panel, and that came back positive. She was referred to a gastroenterologist in Richmond, VA, and after reviewing the blood work and symptoms, he wanted to do an endoscopy and a colonoscopy.
In December, Julia was diagnosed with celiac disease which “is an immune disease in which people cannot eat gluten because it will damage their small intestine.” Gluten is considered wheat, rye, or barley. Symptoms of celiac disease can be diarrhea, gas, bloating, weight loss, and constipation. Celiac disease can also be genetic, but there was no evidence of the disease in other family members of Julia, so she is unsure as to how this all started. If celiac disease goes untreated, it “can lead to the development of other autoimmune disorders” and “increase the risk of developing certain digestive system cancers.”
Today, living with food allergies and celiac disease has been a challenge as she has experienced reactions due to cross contamination. Cross contamination happens when traces of a substance are unintentionally transferred to another substance. However, by going gluten free and monitoring what she eats, she does not experience the stomach pain or the other symptoms of the disease. She has to be extra careful, but she has found a new enjoyment of cooking and trying new things.
For an educational video about celiac disease, please visit the following.