I have been asked to write more about our personal journey with food allergies. It feels like this has been a very long journey, but that is probably just because it has been all consuming. Today I am going to tell you about the journey we have been on with my middle daughter. I am starting with her because her allergies have been the most severe and greatly helped us to recognize food allergies in our youngest when she had them as well. In due time, I will write our journey with my other two as well. I think all of their stories are worth sharing as all of us have different journeys with food allergies but similarities too. This food allergy community is one that I am so thankful for and happy to be a part of.

From the moment my middle daughter, “Peppy”, was born she screamed most of the time. At her one week appointment I told our pediatrician, who we love, that my daughter cried all the time. He said that it couldn’t be colic at that point because colic doesn’t start until 6 weeks or so. From then on, we kept in pretty close contact with our pediatrician. Peppy continued to scream, vomit, and have diarrhea often. I think I cried almost as often as she did. My oldest, then three, was having a hard time adjusting to having a new sister and all of the crying as well. Truth be told, we all had a hard time adjusting to the crying. I knew that something was wrong with Peppy, but no one knew what was wrong with her. Those days were long and exhausting. I remember for months that all I knew to do when Peppy screamed was to hold her and sing “Amazing Grace”. It was all that got us through that dark time. Every time I hear that song now I cry for many reasons.

I was formula feeding because I didn’t produce enough milk to feed Peppy so my pediatrician suggested trying different brands. We went through as many dairy formulas as we could think of still with no change. Then our pediatrician suggested trying soy formula so we did that and the screaming, vomiting, and diarrhea persisted. Realize all of this probably took two months since we needed to try new formulas for long enough to determine if they were helping or not. Our last ditch effort was to put her on Nutramigen which is a hypoallergenic formula and also begin stool testing on her. Peppy continued to have the same symptoms on Nutramigen and also tested positive for blood in her stool two out of three times. By this point she was also failing to thrive as she couldn’t keep very much formula down. My pediatrician finally referred us to see a pediatric gastroenterologist at Seattle Children’s hospital. The GI clinic is so far booked out it was probably a month before I could get in.

By the time we got to our GI appt we were a mess, just hanging by an emotional and string. Peppy was 11 weeks old when we finally made it to the GI. Our new GI came in, he was the sweetest, most helpful, and understanding Dr. He carefully listened to Peppy’s story, looked over her , her chart and test results, and simply said that Peppy had severe food allergies to dairy and soy. At that appointment he gave me a few cans of EleCare prescription formula to try and said she would be fine. I was hesitant to believe that this formula was going to work, but I was willing to give anything a try at that point. We went home and I started the EleCare and I had a new child instantly. It was nothing short of amazing for us and also laid on some serious mom guilt. I felt like I had been poisoning my child, unknowingly. It was horrible, but I am just thankful that the EleCare worked for Peppy. Peppy remained on EleCare until she was four years old to keep up her weight and keep her food allergies at bay.

We continued to see the GI regularly as Peppy got older for weight monitoring and also as we added new foods into her diet. I am so thankful for this team of Dr’s, nurses, and nutritionists that cared for Peppy for many years, they always gave me hope and support. The more foods we added to Peppy’s diet, the more we found that she was allergic to.

When Peppy was about 18 months old we went on vacation to Arizona to see my husbands family. A few friends from home were also going on vacation there so we met up at the house they were renting. In the basement of the rental home there was a movie theater so all of the kids were watching a movie. Our friends kids were eating shelled peanuts and throwing them on the ground when they were done. My husband was with Peppy and she picked up a peanut and put it in her mouth. As soon as she got the peanut in, my husband noticed and took it out of her mouth. Immediately after, Peppy began to cry. It was a long day without a nap so we figured it was time to get her to bed. She cried and cried as we gathered all of our things and buckled the girls in the car. On the way home she continued to cry really hard and began scratching her tongue saying “owie, owie” We couldn’t figure out what was going on so we took her home and got her ready for bed. At this point we put her down but she just kept screaming and scratching her tongue. This was really abnormal for Peppy, she loved to go to bed. All of a sudden, it clicked, THE PEANUT! We immediately called our consulting nurse and she told us to take her straight to Childrens ER in Phoenix. That felt like the longest drive ever! We arrived at the ER and a nurse checked Peppy right away to be sure her throat wasn’t closing. Her throat was still open so we waited to get a room. Upon entering the ER we retold the story, along with the fact that my mom has an anaphylaxis allergy to peanuts. The nurse and Dr left and quickly came back with benadryl and a shot of epinephrine. Peppy quit crying for the first time in 7 hours. From the moment the peanut went in, to getting benadryl and an epinephrine shot was 7 hours!! :/ We spent the rest of the night in ER to monitor her for a secondary reaction. At 7 am we were released, it was Mother’s Day 2011. We went straight to a pharmacy to pick up an epi pen and benadryl, our lives forever changed that day.

We saw Peppy’s GI not long after her anaphylaxis reaction to peanuts. He suggested staying away from all nuts since her reaction was so severe from such a small amount and my family history of allergies. Peppy’s list of allergies continued to grow as she got older. It’s honestly hard for me to remember all of them because they have changed over the years and my youngest daughter also has severe food allergies. I think Peppy’s list at one point that she was allergic to was dairy, soy, tree nuts, peanuts, eggs, wheat, corn, peaches,tomato, and some other fruit I am forgetting. By the age of three Peppy’s GI didn’t think she would grow out of any of her food allergies. We had tested and re-tested all of the foods in office when needed but she had no change.

This is where my very in-depth baking for multiple food allergies began. I had been baking for food intolerances for many years at that point, but not for severe and multiple food allergies. While I loved our team at Children’s I never had someone to explain in depth what food allergies are, what kind Peppy had, when to use an epi pen, how to use an epi pen, how to make the food she needed to eat to keep her safe and gaining weight. What I have found is that none of these were the job of the specialists we saw. Peppy had severe, though not life threatening food allergies (except peanuts) and had all GI reactions. Allergy testing was never helpful because food allergies that effect the GI tract don’t show up on a prick test. We didn’t have an allergist that followed us for that reason. Our nutritionists were amazing at giving us the kinds of food to feed Peppy, but their job wasn’t to find recipes for us, teach us how to bake safely, eat our safely, etc. This is exactly why I started my business. There is a huge gap in service. The practical piece of how to live this food allergy life once you leave the Dr’s office can be so hard and overwhelming. I am passionate about helping people through the practical steps of living with food allergies. You can contact me and also sign up for my newsletter for more helpful information.

I am happy to say that Peppy passed an in office prick and oral peanut test when she was 6. The rest of her food allergies have gotten so much better the older she has gotten. All of them are now either intolerances or she can eat them just fine. Currently she is intolerant to gluten, dairy, soy, corn, and tomato. There is hope whether that means allergies go away or this life becomes easier as we live with them longer.