Undiagnosed celiac and nonceliac gluten sensitivity can look very different from person to person. Sometimes gluten free seems to be THE answer; sometimes it’s just a piece of a person's health puzzle, as is the case with Caitlin.
(This family is from South Africa, where celiac is spelled “coeliac,” which is how I will spell it here, as I retell Caitlin’s story):
By the time she was 5, Caitlin was diagnosed with CVID (common variable immune deficiency). I had to look this up, as I'd never heard of it before. It basically means that she is highly susceptible to infection due to an impaired immune system. They continued to follow a (not so strict) gluten (and dairy) free diet.
Maybe gluten wasn't affecting her health?
Diagnosis: psoriasis. The prescribed cream, however, didn’t work.
Chronic illness in a child brings out mom's super strength and need to dig deeper.
Even though mom felt they were very strict with Caitlin's diet, she continued getting sick. At age 7, she suffered haempoholus influenza and other infections. Stomach aches and constipation developed. When she turned 8, mom brought her to a gastroenterologist, who then ran several tests. Mom's continued research led her to question coeliac, as gluten sensitivity also ran on dad's side of the family.
While test results didn't confirm "coeliac," the doctor didn't want Caitlin to consume gluten just for the purpose of verifying coeliac with a biopsy. She felt it too risky to her health. Testing discovered severe acid reflux, low IgA, and the DQ2 gene for coeliac. .
Mom works hard to keep Caitlin healthy---and she works hard to keep her included (and safe) at school. She sends gf cookies and sorbet when cupcakes and ice cream are shared for other's birthdays. When the classroom experienced an “around the world” meal, Caitlin’s mom even made sure Caitlin had safe comparable items to eat with her classmates. She made: gluten free Chinese bow ties, gf sausage, gf Indian samosas, rice milk for her tea, and more.
Kids often make the best role models (for grown-ups).
While having a special diet can be a challenge, I love Caitlin's attitude. She and her brother participate in therapeutic play to work through the trauma of so many medical issues and tests. While some of her writing expresses her anger and sadness, I so love this journal entry.
Click HERE to find a Celiac Awareness poster.
Let's light up Facebook!
Awareness reaches those waiting for answers.
Too many wait too long for proper testing.
If you have a story you wish to share, please email me at firstname.lastname@example.org
(so I can send you a questionnaire to complete).