Please stop offering my kid cookies!

I've decided to start a blog to track our battle with food issues. I think a lot of people get confused and overwhelmed by me and beth's issues and it can be confusing. And this allows me to vent too!

To set the record straight, Beth did NOT inherit food issues from me. She doesn't have the same intolerance as me nor does she react the same way. I was not like her as a baby.

Beth has FPIES (Food Protein Induced Enterocolitis Syndrome). At least we are almost positive she does. We're hoping for an official diagnosis in February. We've had to find answers ourselves because the medical profession has been less than helpful thus far.

Beth is NOT celiac. She does not have issues with gluten. I am also not celiac to be clear.

I hope this blog will be informative and also encourage any parents of children with "mystery" health problems to hang in there and fight for answers.

So, a little background on Beth's FPIES. Here's the breakdown of her reactions

4 months old: First taste of rice cereal = violent vomiting for 2.5 hours. We thought it was a reaction to dairy.

4.5 months: Second taste of rice cereal with soy= 2.5 hours of violent vomiting. No more solid foods for a while. This was the point when I first googled intolerance to rice and found an article on FPIES.
- We took beth to the doctor and was told she was fine, to wait 15 days and try again.....I'm not an idiot, we did not do this and I found a new doctor.

6 months old- spoke to a dietician and was told to try oats = 2.5 hours of violent vomiting
- spoke with an allergy specialist, was told that a reaction to rice and oats was common and to try other grains
- finally success with Quinoa!! (for the record, quinoa is NOT a grain, which is why it worked)

8 months old- first taste of wheat (booo!) = 2.5 hours of violent vomiting
- we made the decision to put beth on a grain free diet, read a lot about FPIES and decided we would have to wait for answers
- took beth to a new doctor in Abbotsford, he said she was just sensitive and didn't need a pediatrican, she's fine (haven't been back since)

I found a lot of recipes using Quinoa, Buckwheat, arrowroot, tapioca and potato flour. Beth started eating bread, muffins and cookies and I managed a respectable chocolate cake for her first Birthday. All other foods were going fine including meat, eggs, dairy, veggies and fruit.

16 months - SOY. We were at the dog park when she started choking on her vomit. Had to drive home while she projectile vomited all over the car. Once again, 2.5 hours of awful (my towels are all ruined by now)

- I found a new doctor for me at a drop in clinic and told him about Beth. He was amazing and actually said "I don't know anything about this so I will refer you". Shouldn't that be the attitude of all doctors? If they don't know, find someone who does!

We went to the pediatrican and Beth was allergy tested which I was not optimistic about as I knew that FPIES does not show up in regular allergy tests. The results were what I expected. The doctor said she has no allergies so try rice again since it's been so long, she's probably outgrown it.

You'd think by now we would have learned, by no, we listened to him because we wanted so bad for him to be right.

18 months- Rice= 4 hours of vomiting and a trip to the hospital after she vomited blood.
- pediatrician at the hospital said she was just sensitive and she was fine

18.5 months- ate cousin Hannah's grain free birthday cake made with almond flour= 2.5 hours of violent vomiting. We did NOT see that coming. No more nuts for Beth!

We were finally referred to children's hospital when Beth had an ear infection. I took the opportunity to rather forcefully tell the walk in clinic doctor that we WERE getting referred to Children's. I wanted a pediatric gastrointestinal specialist. He just looked at me and said "OK". I could have kissed the man.

The big day is February 7, 2012. One week before her second birthday.