The FPIES MCAS Theory

I have a theory that MCAS is actually out of control FPIES, food protein induced enterocolitis syndrome. I also have a theory that FPIES is not as rare as people think. I think it is incredibly common in babies but is misdiagnosed as reflux and milk allergy. FPIES is known for causing projectile vomiting when you begin solids at six months old. It isn’t the normal gag reflux since the vomiting is usually between 1-4 hours after eating. My son would vomit at an hour almost to the minute every time if he didn’t nap. I believe that sleep slows down digestion and can mess with the times a little.

I’m not a scientist but from research I will say the microbiome is involved. FPIES and MCAS are autoimmune diseases. From what I’ve gathered an important factor is upping the good bacteria in the baby’s gut. Some things you can do to do this are spending more time in nature, time around animals and breastfeeding. I will say the FPIES can be an unpredictable rollercoaster. Not every person will react the same. I’ve had periods in my life where I felt cured and I had periods where I am very stressed and sick. I do think though that my children and I may have MCAS as well, mast cell activation syndrome. Sometimes I eat a trigger food and my body reacts strangely. Chills and lethargy instead of vomiting. My daughter has very sensitive skin and we all have regular allergies. I once heard that 25% of kids with FPIES have regular allergies. It is still such a newly discovered disease the research grows every year.

So now you know the facts and theory, I’m now going to tell you about my life. A patient’s and parent’s perspective. I aim to give you hope that things will get better but reality is, if your child has a severe case, you may be in the trenches. I know of kids who are three years old only on formula and three foods. I know of kids who develop kidney disease. Our little autoimmune kids need our help. I like to say our babies have sensitive systems. The will grow big and strong they just need our help. My life is a warning to what happens when you ignore FPIES. When you don’t know what is going on, when you don’t believe your kid’s tummy aches. I truly feel the faster you treat FPIES, which is just avoidance of food they are allergic to, the faster they recover and get over it. I am 28 years old and I still struggle with FPIES sometimes. I know there are other adults who have a random sensitive stomach. There is hope for you too.

Facebook

I left Facebook then I went back to it. I was looking to talk to a couple people I couldn’t find on Instagram so it felt like a solution. The app now gives me anxiety. I will admit I’ve gained knowledge from a few groups. Stayed up to date on things. That’s what Facebook is for me, the groups. The alerts and repetitive posts drive me a little nuts. I’m keeping the app, but I may move it to page two on my iPhone so I don’t see alerts.

Do you still use Facebook? What do you think of it?

My Biological Father

I swear I was raised to be a mob wife. Rumors true or false, I was. My father was very private. He divorced my mother when I was two years old. He will probably hate this book, unless it sells and makes millions. My father would always say “information is power”. He didn’t want me to talk about anything.

My father is a very smart entrepreneur. When I was young, we were poor. We didn’t answer the phone because it might be a bill collector. My dad once joked that he could water down the 3% milk and it would be just as good. Thankfully, I convinced him it was not the same thing. My dad worked hard to keep our house. He had dropped out of high school and taught himself computers. He had his own computer store for a few years, building and repairing. When Dell got big, he sold it. It was just too easy and affordable for people to buy new. After that, he became a computer programmer. My dad was self taught. He learned C++ himself by a book. He got big contracts consulting on IT.

My dad has always been my hero, even though our relationship has fallen to pieces. I’m sure he would be happy to read that. When I was 16 years old my dad bought a house without a room in it for me. He suggested I get my own place, saying he moved out of the house at 15. My Florence, his mother, told me he was actually 23. Maybe he was barely home, I’m not sure. I do know I did find a place and cried last minute. My mom moved me into her place full time. It was the middle of winter and it was an hour walk to my work. I was still in high school. I wasn’t ready to live alone.

I think I could have handled it. I could have afforded it. I don’t think my father thought I was university bound. I was on and off with school. I was dating a guy in his thirties. I was a bit of a trouble maker. He didn’t know I was talking to Chris. I never talked to him at my father’s house, I saved that for the weekends at my mother’s. I don’t even think I had a computer at my father’s in high school. I could do my homework at the school library. Essays I could write ahead of time at my mother’s. I made it work.

The weird thing with my dad and I was that maybe I didn’t ask for enough. The rules were set in early childhood. The rules stuck. In the end I have two half brothers and a stepsister. My dad is on his third wife. I haven’t seem my dad since right after Florence’s funeral. The last thing he said to me was a text “when’s your birthday?”. My nana left me some money.

I miss my father. I wish he was back in my life. I doubt that will happen. I don’t even know how to get a hold of him. I find it fairly ironic that I am the one in the family to write a book, since my step sister is the one who finished university with an English degree. I took one year of biopharmaceutical studies and dropped out.

The App

I wanted to give you guys a little more details on the app. I don’t know if you ever heard of Fetlife but it is a site where you type up a blurb and write your sexual kink and meet people. It seems people are using it as a dating site, not just like a hookup site. I think you need to fill out a massive questionnaire when you sign up, but you can change it at any point. I want to fully protect the LGBQ community and be more specific. For example, would you meet a cross dresser? Transsexual? Before or after surgery? Boxes to check. Your profile won’t necessarily say all your details but the swipe feature would match you with what you find an option to date.

I’m also thinking purchasable backgrounds in cute prints for littles and polyamorous settings. What do you think?

My Life With FPIES

When I was a baby I was put onto formula because I was deemed too hungry for breastfeeding. My family is a bit desensitized to the hell I found my second child, Gavin. All the lethargy and puking was a normal part of my babyhood. I know a few things. I was an incubator baby with an underdeveloped stomach. I was probably vomity from birth. My mom had an emergency csection since the cord was wrapped around my neck. My mom breastfed for three weeks to three months, she’s unsure. I know I was lethargic. My mom had post partum depression and I spent my day sleeping in bed. I have been told I couldn’t be shaken awake and my mother would feed me bottles in my sleep. My baby teeth rotted from having a formula bottle in my crib at night. Apparently, I projectile vomited on everyone and so did my mother.

Some things I know I have been allergic to as an adult are dairy, soy, goat milk, nuts, basil, potatoes and kiwi. I have symptoms of MCAS when under extreme stress. I was allergy tested as a kid and I remember some type of tree and MSG was positive. I know it felt like MSG built up in my system and I would get randomly sick about every six months. Maybe we are just genetically unlucky. My father in law is allergic to shellfish and my father is allergic to morphine. I will say this, for a sick little baby my son has a great immune system. He is two. He is the toughest kid in the world. He doesn’t even blink when he gets needles and is still happy when his fever is 40 degrees Celsius. My daughter is a little different. Ellie is five. If she has the slightest fever she is knocked out. It is borderline, and we need to give her Tylenol.

I’m not sure what I was like tolerance wise, but I do know I went to school FPIES sick a lot. At some point I stopped puking. Most of the time experiencing crippling nausea. I found ways to cope, including over eating. I had systems. I would have Cheerios for breakfast, be fine, then passed out on my desk at school. I’m sure my father got in trouble for a late bedtime. He coped by letting me sleep in and the school hated our lateness. It was elementary school though. I knew I would be sick at school, so I didn’t want to go. My dad would always ask, “Where’s the puke?”. Once I did puke in front of my stepmother Mandy and I had to clean it up. She didn’t think it was right that I could stay home and play video games. I suppose sleeping on my desk wasn’t the worst option.

I think I got MCAS because my FPIES was ignored. I think the body smoke signals. I had no idea it was the cow’s milk. The weekends I spent with my mother and I would always get sick from the pasta sauce. Turns out it was basil. My great grandmother on my mother’s side would make gnocchi with ricotta cheese. Delicious but that would make me so sick. Secretly puking at parties was a thing I did often. I felt better after I was sick, and I wanted to play with my cousins. My father thought I complained too much and wanted people to feel sorry for me. He thought it made me unlikable. Lack of puke, boy who cried wolf syndrome. The reality was I was way more nauseated then he could understand, and lethargic. I was a chubby kid and I was tired. I wanted to lay down, colour, play video games. Sometimes we would go out and I would suddenly feel exhausted. My self esteem plummeted because I was deemed the fat lazy kid. I did my best to keep up appearances, but it was hard. I still feel like that.

Highschool was easier. I was gifted, IQ 136, so I could manage to do the work when I felt like it and lounge around the rest of the time. I wasn’t the best at going to class especially grade 11 and 12. I was convinced I had bulimia. I overate and ate every two hours to keep from puking. Sometimes I’d miss my snack time or try to eat salad for lunch. There were consequences. If I puked I might get a migraine, it might last days. I tried endlessly to work with family doctors to get a diagnosed. Countless blood tests, ultrasounds, a colonoscopy, and an endoscopy later, I was diagnosed with anxiety. I knew this was wrong but it felt hopeless. I feared pushing the issue. I feared being labelled a hypochondriac. I wanted it validated. I had anxiety because I was sick. I felt hopeless and alone.

I developed a deep depression. My immune system wasn’t the best. I got bronchitis three or four times. I was FPIES allergic to an antibiotic. I kept getting sinus infections. I felt stuffy all year round. My family doctor put me on antidepressants. Some of them helped. Life seemed harder than it should, I wondered if everyone felt this way.