My daughter was diagnosed with Celiac Disease – an allergy to gluten – at the age of 10. While the diagnoses wasn’t ideal, we were happy to finally figure out what was wrong. Her symptoms weren’t typical, and it didn’t cross our minds an allergy was making her unwell. No one else in our family has this food allergy and it can be genetic.
I’m the type of parent that needs good hard evidence before going to the doctor. As a mom of a very spirited and dramatic child, it was sometime hard to determine if something needed medical attention. We had many ‘the boy who cried wolf’ conversations as she grew up! Well, needless to say, the stomach pain, listlessness and overall not feeling well each and every day with my pasta-loving daughter was real.
We are very lucky to have an incredible pediatrician. He recognized the symptoms immediately and then began tests, blood work and specialist appointments followed by a diagnostic scope to confirm. After all of this, my daughter received an official diagnoses of Celiac Disease.
Now, although it is not an anaphylactic allergy, and we do realize how lucky we are, it comes with its own host of challenges. Changing a 10-year old’s entire way of eating was the first step. She went through many days of sadness and frustration that she couldn’t eat her favorites of pasta, pizza and Looking back, and still looking forward, most people still don’t completely understand the allergy and Celiac disease. A nut allergy is easy to understand because of the severity of it.
Asthma is easier to understand because you can see and hear what is happening.
But with gluten, it’s not anaphylactic or visible. Anyone with Celiac disease has heard ‘while she will just be a little sick’ or ‘I have a gluten sensitivity too’. Now, not to knock those with gluten sensitivity, but Celiac Disease is not a just an intolerance. Those officially diagnosed with Celiac disease are not just sensitive to gluten. They are fully allergic, have an autoimmune disease, and can get extremely ill for days with the only the slightest speck of a crumb.
Because of this, we were constantly worried about cross contamination. For that first year we all went gluten-free in our household to make it easier to meal-prep and not worry that we left ‘real’ bread crumbs on the counter! But…she can’t live in a bubble, and she’s an extremely social being so hiding her away from the outside world would be impossible. Not to mention as a family, we love to eat at restaurants!
Cross contamination, in my opinion of living with someone that does have Celiac Disease, is probably the most challenging thing. Many wonderful people in our lives offer and try their very best to provide gluten free options. But cooking with gluten free ingredients is one thing. Ensuring that everything you have touched, or use has not touched gluten is another. The toaster, the pans, the butter you have scooped before making your gluten-filled toast, using one spoon to stir a sauce then another to stir a gluten free sauce, all must be free and clear of the smallest speck of gluten. We have learned to bring gluten free dinners and snacks whenever we go. Sleepovers have become easier and as she’s grown up; she’s become an incredible advocate for herself.
That is what I am most proud of. She has taken this on as her responsibility (this is not the easiest to do at 10 years old), learned how to read labels, asks the questions, ensures for herself that friends and restaurants understand. Overall, it’s becoming easier over the years. “There are always worst things in the world” is her motto and she is truly a glass half full girl!
What I didn’t mention is that I am horrible in the kitchen and cooking isn’t my thing. It isn’t my husband’s favorite thing either. But we have all learned to adapt and are taking this in stride. There are excellent resources out there on at the library, the internet and in the celiac community that we constantly use. The gluten-free section at the grocery stores is expanding and all-in-all we take a page from our now 15-year-old and do our very best keep our glasses half-full!
Images Taken By Spencer Todd