C C & KM 's Story
Tell us about your allergy story.
As newlyweds my husband and I found ourselves navigating the complicated and poorly studied world of eosinophilic esophagitis. He had been having choking spells during eating for four years without a diagnosis and finally found relief after going on a total elimination diet cutting out all the top eight allergens. We slowly added foods back but he remained allergic to wheat, dairy, soy, nuts, fish, and sesame. We battled infertility and eventually had our first daughter, CC, with the help of IVF. She was our perfect miracle️, breastfeeding was hard but at 2 weeks old she changed. She began vomiting 30+ times per day. She cried non-stop. She would arch her back trying to get away from the pain of reflux making it hard to even hold her. Doctors started reflux medication. We asked if Thomas's condition was hereditary and they assured us that a child reacting to their mothers milk was unheard of, don't eliminate food from your diet.
At 2 months old she began vomiting blood. The endoscopy showed no signs of EOE but a very raw esophagus and I was told to limit my diet. That day I stopped eating all top 8 allergens. She improved day by day with the help of heavy-duty reflux medication. I continued breastfeeding and pumping until she was 15 months old. During that time, she had one bad reaction and went into shock after nursing when I was served a meal with hidden dairy at a restaurant. She has since been diagnosed with FPIES and Mast Cell Activation Syndrome and has 11 safe foods. We were surprised to find out we were expecting our 2nd miracle, KM. I heavily researched food allergies and prevention and took loads of probiotics in hopes that are second little girl would not struggle like CC did. At 2 weeks old, the crying and reflux and blood-filled diapers started again. This time, since we knew more, we were able to jump more aggressively on finding trigger foods and treating the cause.
I eliminated countless foods from my diet beyond the top 8 allergens. After finally getting down to 5 foods that she could tolerate through my milk her growth began to improve and she was such a healthy, happy girl. Now, at 2 years old, she is still nursing at night so I am still on a restricted diet but it is much less restrictive than those first 16 months. She's supplemented with elemental formula and it took 5 months for her to accept a bottle of Elecare. She has 5 safe foods that she really enjoys and we are so thankful!
What piece of advice would you give to parents who just discovered their child has allergies?
It's not the end of your life or your child's. Modify foods, find safe foods your child loves, and remember that you can still have love, fun, and memories without food being the center of it all.
What keeps you motivated in this journey?
My motivation is showing my girls that different isn't less. I want them to know that they are a force to be reckoned with and their allergies don't define them.
What do you wish others understood about food allergies?
Food allergies are not a choice. Anyone can develop them at any point in their life. They're not caused by not eating enough of a certain food during your pregnancy. They're not caused by not drinking enough hose water as a child. And most importantly, if I feed my child a small bit of the food that they're allergic to "desensitize them" they'll die. All from "advice" I've heard over the years.