365 days since the cheese sandwhich

Well, here it is. A full year since I reintroduced cheese to Jayden and started a mess we can't stop. 365 days. In 365 days there have been only 4 days that we have had no problems at all. Only four. We are many times better than where we started. We have gone from 14 hours of acid and a very sick kid to only three hours a day and a not so sick kid. We have been able to successfully reintroduce several foods. He can have any drink now, like orange juice and apple juice. Soy free and dairy free chocolate has been found, we are used to cooking dairy free,soy free, and gluten free, and we are working CAUTIOUSLY on Parmesan cheese. We are also more weary. Twelve doctors later and many hard tests, we still have no answers...nor any help. This has been stressful on everyone, and it's very hard to stand here and say we still have no idea. A couple months ago, Jayden got hit by a ball in the stomach, which aggravated his symptoms, going from medium, back to intense. He had a cold with a cough last week. Every time he coughed he brought up acid. That was two months ago, yet we promised Jayden he could play football. I will be praying through every practice and game. I don't want to live in fear, but I saw the results of the kickball, so I am fearful. Yet, all in all, Jayden plays, and has fun, and looks normal (as opposed the first three months where he was a sickly green all the time.) He laughs and jokes and reads all the time. But at night, he's frustrated and in pain.

There are very few mainstream pre-packaged food that are soy-free, dairy-free, and gluten-free. There are a couple on this list that if everyone had at their party, then everyone could eat.

Lays Potato Chips
Frito Lays
Skittles
Quaker Rice Cakes Kettle Corn (only)
Corn Chips (a few have soy...most don't)
All Chex cereals except wheat

Here are some mistakes that we have made: Oscar Meyer Ham. The cheaper brands do not contain soy, but I have found in both hot dogs and ham when you get into the main brands, soy is found. Other mistakes: just about anything else, soy is dangerously in most foods, especially if it is gluten-free, or dairy-free. The gluten-free aisle is worthless in our case. I think the biggest mistake is allowing people to help with cooking. It's so nice and kind but it's so dangerous. You have to train yourself not to spray Pam into your pan, or to not sprinkle your work area with flour. Another mistake was rushing the reintroduction of foods. Once we slowed WAY down, we had more successes then misses. Finally, a HUGE mistake for us: seeing a naturopath. It's not that I don't believe in them. But it goes along with the foods. She prescribed three different types of vitamins which we gave to him all at once as prescribed and after one dose we went from mild to extreme for two months. Jayden's system can not take it. So what I have learned, doctors know what they know, but you are there every day. If I were to do the naturopath again. I would have gotten her prescription, started with one of the vitamins and cut it down to a forth of it and introduced it very slowly. We won't give medicine out as readily as before to any of our kids.

Here are some hits: Asian Rice Noodles, they sell at Winco pretty cheaply. They are extremely filling (although, you should look on the web for how to cook them as it is different from regular pasta). Discovering Bob's Red Mill and buying flours in bulk. It's a 40 minute drive, and very worth it. Are best hit there is the gluten-free brownie mix. That's the best brownie mix from any store! Biggest hit: I can get rid of the gluten-free taste in almost anything with a little extra sugar, a little extra vanilla, and cinnamon. That was my main goal in gluten-free cooking. I wanted to feel that I would actually eat the foods I cooked, and the recipes (just about all of them) are not very pleasant to eat the way they are written.

We appreciate your thoughts and prayers as we continue to figure this all out,
Thank you for traveling this journey with us.

Peace, Susan