OAMM Staffer Lisa, was diagnosed with Celiac Disease in September of 2013. As part of Celiac Awareness Month, she’s continuing her series to help others with their journeys.
As a parent, your biggest fears are being unable to control things with your child. After my Celiac diagnosis, my first thoughts went to my children. Studies show that if you have a 1st degree relative with Celiac disease, your risk goes from 1 in 100 to 1 in 22. Fears for my children wreak havoc on my heart. Could I pass this disease onto them? Will they suffer the same as I have? Will they be bullied for their unusual eating habits? Do schools even take this allergy seriously? Will family and friends realize that this is not something they can cheat around? I have not yet had my children tested. I know I should, I really know I should. However with no signs or symptoms presenting themselves, it’s not as pressing. Many of you do not have the luxury of letting your children cruise through and assume things are fine.
Fear and Frustration
It all started almost two years ago. My then 5 year old daughter woke up sobbing, doubled over with stomach pain. The cramps would come and go and I held my daughter helpless to make it go away. This was the standard routine for nearly two weeks. When we went into the pediatrician, they told me she was constipated. Their solution was to give her a laxative twice a day for 4-6 weeks. Not quite what I was hoping for, but I gave her one dose of the laxative which made her so sick that she couldn’t leave the bathroom. I stopped that immediately, but the stomach pains, chronic vomiting, alternating constipation and diarrhea continued. We took two trips to the ER where the same diagnosis, or lack of, was given. I was lost and frustrated!
During this time our family had started transitioning to a Paleo lifestyle. However, I would send a sandwich in her lunch from time to time, or we would eat pasta or bread outside of our home. I started to notice when my daughter ate bread or pasta she would be up most of the night. I started researching gluten sensitivity and celiac disease. I made another appointment to see the doctor and demanded a Celiac test. They ran the test but it came back negative for celiac- they told me she could “keep eating gluten.” I was deflated. I just had that mother’s intuition, gluten was her problem. I started her on a gluten free diet and the stomach pains got better.
Cycle begins again
Fast forward several months to the Holidays where we got pretty relaxed with her gluten free diet. The stomach pains came back slowly and I noticed some new symptoms. During our home school day, she would have a hard time completing simple work, staying on task for more than a few minutes, and was often emotional for no apparent reason. She would also get extremely itchy on her back and legs. I decided to go back to monitoring her diet and keeping as gluten free as possible. The stomach pains got better, the itching improved and our school day was more productive. I say her symptoms got better but didn’t completely go away. Watching my daughter improve on a gluten restricted diet, researching celiac disease and gluten intolerance, researching to exhaustion, it became my mission to get real answers. After talking to a friend who had found out two of her children had Celiac and one had Non-Celiac Gluten Sensitivity, I found a medical provider who used the same laboratory with the tests she recommended. It was such a breath of fresh air when I called to make the appointment and the doctor agreed Raegan indeed may have a gluten issue. At last I had hope.
Finally a resolution
As we suspected Raegan does have a sensitivity to gluten. She is not Celiac, but she does have an innate immune response to gluten. The official diagnosis is Non-Celiac Gluten Sensitivity. It is very serious and she can never eat gluten again. The reason her symptoms got better but still lurked is because she also has additional sensitivities to dairy and most grains. This includes many of the alternative grains found in convenient gluten free foods. Which is deflating because with two other girls running around and me working, those grab and go’s are so simple many days! We were excited to finally have a diagnosis! And then the fear set in. How do I protect her from this in my own home, at school, in restaurants? I went to the bathroom after a trip to the grocery store and cried. The first time we ate out, I broke out into a cold sweat and had anxiety about cross contamination and her getting sick. It’s not easy by any means. But she’s worth every minute of this battle and we will tame it! I have started to take new stock of things in our home. What can we do as an entire family to make Raegan feel good about who she is and supported 100%? We added to our arsenal of cookbooks with recipes that support our variety of needs. We started to take more time to fill the freezer, pantry and fridge with good foods for all of us. We have talked with family and friends that this is no longer an issue that has “cheat” times. We have even discussed throwing Raegan a Gluten Free Party! Where she can take some time to celebrate the good things she CAN have. Where she can feel proud with her new diagnosis and share what she’s learning about foods with her friends.
Be A Momma Bear Advocate!
For those struggling to make sense of your child’s behavior or chronic digestive issues I encourage you to keep searching. Trust your mom instincts. If you have tried to get answers and your doctor was unsupportive or you don’t feel like you got accurate tests, find another doctor. I know it’s hard to make that switch but your heart knows best. As moms and dads we know our children better than anyone and we have to be their advocate- their health depends on it. And in the meantime look for great recipes like here at OAMM to show your kiddo that Gluten Free isn’t boring. Like Gluten Free Pop Tarts or our family favorites Chicken Nuggets with Chocolate Chip Cookie Cake for dessert! If you have additional questions, please comment below, visit our support page, or feel free to email us as well. We want to help you! *This post contains affiliate links.