Helping Parents Recognize Celiac Disease in Their Children

When I was a working mom with two children in school and a job that required a bit of a commute–juggling a lot
of things was simpler when I followed a morning routine. I was lucky when it came to making lunches because my children enjoyed a fairly small repeating pattern. What I didn’t know is that the pita chips and hummus or cute mini sandwiches that I made regularly were making my daughter sick. In fact, when she would sporadically complain of a “sore tummy,” I would often follow the old advice of “tea and toast”—unaware that by giving her basic breadstuffs, I was making things worse.

Celiac disease (CD) is basically an inability to properly process gluten—which is found in wheat, barley, rye, and other grains. Physical symptoms of CD can range from acute stomach pain to bouts of diarrhea. CD can both retard development of a growing child and cause physical damage to the internal digestive system.

So, basically, by following my easypeasy school lunch routine, I was essentially harming my child. BUT—knowledge is power. Since my daughter was diagnosed, she has adopted a gluten-free diet and has become stronger.

It is valuable to know that CD can be somewhat silent as it goes about causing internal damage. Symptoms are often uneven or simply easy to attribute to a “bug” or, nerves, or too much candy.

• It takes an average of four years to be correctly diagnosed with CD.
• The CD Foundation (CDF) estimates that there are over 3 million people with CD in the United States—and fewer than 40% of people with CD are diagnosed.
• CD puts people at a higher risk of death than other afflictions such as non-Hodgkin’s lymphoma, liver disease, pneumonia, and small-bowel cancer.

Ultimately, there are a lot of people missing school and work, feeling sick, spending time at doctors, and wasting time and money wondering why they are not feeling their best.

My daughter was officially diagnosed on her 21st birthday (tequila is usually gluten free!). Within four years of her diagnosis, she worked her way through her master’s degree in a typical beer-based college environment, grew over an inch taller, learned to cook “safe” foods, and completed two trips to Europe and five business trips within the U.S. Even with an iron grip on her diet, she still suffers from anemia and somewhat routine stomach “discomfort”—which is apparently her new normal.

Even in special-diet-tolerant California, it can be a challenge to attend social gatherings and eat outside of the house. CD patients need to stress that their request for gluten-free food/drink is not due to the latest fad diet—and their food cannot come into contact with anything that contains gluten. CD patients pay about 20% more for groceries. (Also, gluten-free bread is expensive, prone to breaking apart, and, well, often weird.)

To have their best health, CD patients always need to “plan and protect”. Eating out may be a risk, but danger lurks in other areas as well. Medications are NOT required to indicate if they contain gluten. We have encountered pharmacists that didn’t know if the meds they were giving out were “safe” for Celiac. The CDF is part of a group trying to get legislation passed to require gluten labeling on prescription drugs.

Even medical professionals are sometimes unaware of CD. Twice my daughter was offered “regular” crackers after a procedure even though her hospital wrist band and chart both clearly stated NO GLUTEN.

Right now, CD is not curable. Patients can only mitigate symptoms and hopefully limit damage from gluten exposure by following a restricted diet. For more information, visit celiac.org.

By Suzan Rude
Mom, career coach, published author, and celiac supporter. Focused on “finding the fun.”