We took my son to the allergist the other day, and if the poor kid hasn't been through enough, he received 18 skin pricks. Thankfully skin pricks are not so bad if they are done in the arm. He had to sit still and promise that he wouldn't itch which was far harder than the little pricks. Turns out the skin pricking showed that he is not allergic to wheat, soy, or peanuts. What? Why did the blood test show one thing and the skin pricking show another?? Well, that means that we don't have to do the gluten-free diet after all. Unfortunately, for this gluten-eating-and-loving-it family, since going gluten-free Jayden's night time horrors have been cut dramatically in half. We started August 17th gluten-free, and by the night of the 20th, we went from four solid hours of dry heaving and burping to two. Plus we made a huge financial commitment to it so we will stick it out until Jayden heals. The allergist warned me that could be anywhere from 6 weeks to a year!
I don't know if I can take a year of this, or even 6 more weeks. I'm out of my element on the gluten-free cooking. I don't find it fun at all. And it is expensive. With all the food restrictions, we have very foods left, gluten-free or otherwise to feed our son. It is one thing to live like this at home. It's totally different when you walk out the door. School is coming soon, my son will walk out the door with a lunch sack five days a week. What will we put in there? What happens if a kid has a birthday at school and brings some yummy gluten chocolate thing. And it's not the gluten that will do him in at all, but the chocolate. Or the class has a pizza party with forbidden tomato sauce on it?? I am so frustrated. All I want to do at this point is find a way to feed my son, and have him feel like he is going to be okay.
I know when I write the words acid refux or burping, it sounds almost like a joke. But the burps aren't like the ones you have sitting at the dinner table, or after you drink a can of soda or beer. They are forceful and can't be controlled and they cause Jayden pain. They start with his stomach whirling like a tornado. I tried counting them a while back. There were so many I lost count several times. He burps about 40 times in ONE MINUTE. That means there are two THOUSAND, four hundred of them in one hour and 9600 for the four hours that he has been enduring. It's awful. They stop when he's so exhausted that he finally falls asleep. And we are so exhausted too. The allergist, while he was more knowledgeable about acid reflux in general, and did agree the Advil caused these events, was no help at all. The next thing on our agenda is to take Jayden to the Children's hospital and go to a pediatric gastroenterologist. All this because we gave him Children's Advil.
Right now, I am very overwhelmed and I'm very tired. I am grateful to God that he is experiencing less of the reflux at night. I pray we keep moving in the right direction. Thanks all for keeping up with us.
Showing posts with label going gluten-free. Show all posts
Showing posts with label going gluten-free. Show all posts
Saturday, August 27, 2011
Saturday, August 20, 2011
Started Gluten Free today
Today was the first official gluten-free day. I know we are totally, I mean TOTALLY going overboard. And I have to ask is totally going overboard worth all the hassle??? Gluten-free is not fun. But yes, it's worth it because I just want to feed my son. I want to feed my son. And when we get to the allergist and the gastroenterologist I want to be able to tell them with absolute, positive certainty that as far as his diet is concerned we are doing everything we can possibly do. So gluten-free it is.
We are also dairy-free. Dairy-free is not so bad. There is many different types of dairy substitutes. In cooking and baking 1 cup of milk is 1 cup of milk whether it is cow, rice or soy. In addition, Costco sells the Rice milk for a fraction of the price. Love Costco.
We are peanut-free and we are staying away from other nuts just in case. We love peanut butter in this house. But all in all it's just a missing food. It doesn't really affect how I eat. Gluten-free is a major transition. You have two choices. You can drop a ton of money and buy gluten-free stuff or drop a ton of money and make gluten-free stuff. Unlike milk, where milk is milk, flour is not flour. One cup of regular flour equals 1 cup of white rice flour, plus some potato starch, plus some tapioca flour OR bean flour plus brown rice flour plus cornstarch plus tapioca starch plus sweet rice flour. OR some other crazy concoction. Oh my goodness, gluten-free is very overwhelming. I am so very grateful that some very wonderful people sat down and figured all this out ahead of me.
Personally, I'd prefer to drop the money on prepared foods and cook sparingly. But we really can't because we are also soy-free. Soy-free is the worst of them all. Soy is a substitute for dairy and for wheat. I could find a decent spot in a grocery store for gluten-free foods but out of that spot maybe one or two items have no soy in them - even in the big stores like New Seasons. At the wonderful specialized gluten-free bakery in Portland, I have to call even them up ahead of time to order special soy-free goodies, where they have to go out and buy specialized soy-free ingredients to meet my personal need.
I am very grateful for living close to Bob's Red Mill. http://www.bobsredmill.com/ They have all of these flours and then some. It's overwhelming. I went with a couple of recipes and bought the flours I needed. Instead of having one bag of flour I now have 5. FIVE(!) and I found that I actually missed one that I needed - which is a real bummer because that is a haul to go to that store. So I will actually end up with SIX flours to fulfill the duty of one bag of flour that I had before. That's a lot of shelf space I don't have. It's frustrating to me to see all of those bags of flours in the place where my mixing bowls used to be. But this way, I have the most control over our foods.
I am also grateful for Facebook. There are lots of people out there in my own friend community that have gotten me started. And I certainly recommend going to one of these stores, whether Bob's Red Mill, or Trader Joes a with a friend who has already walked the gluten-free road. That was so helpful to have an experienced mom guiding me through the store. I never would have made it out alive. I was so overwhelmed. There are also pamphlets available in stores like New Seasons, and Whole Foods that also guide you through it. I checked out every book in the library. I have to recommend the book Living Gluten-Free for Dummies. I'd insert the picture here if I knew how to do it. Tomorrow we are going out of our house all day and we will have to totally plan every meal before we walk out the door. We can't get caught without our own foods because we don't know how to navigate the outside world. It'll be a hefty challenge for us as we are so new at this. But if we can succeed at something that monumental this early on in the game, we will increase our freedom a ten-fold. I can only describe the feeling as leaving your kid with a babysitter you barely know. What if we don't have food and my kid is hungry than what do we do? We can't just walk into a Safeway and walk out with food and eat (unless you eat dirty fruit)...nor can we walk out of a Trader Joes even though there are more possibilities there and eat because I still don't know what I am doing. It's very nerve-racking. I can walk into a Costco and get a smoothie - God Bless them! I can walk into any Jamba Juice and also get a smoothie. I am excited to increase my "I Can" list, but right now I only know those two things. Wishing us luck!
Peace to all.
Love, Susan
We are also dairy-free. Dairy-free is not so bad. There is many different types of dairy substitutes. In cooking and baking 1 cup of milk is 1 cup of milk whether it is cow, rice or soy. In addition, Costco sells the Rice milk for a fraction of the price. Love Costco.
We are peanut-free and we are staying away from other nuts just in case. We love peanut butter in this house. But all in all it's just a missing food. It doesn't really affect how I eat. Gluten-free is a major transition. You have two choices. You can drop a ton of money and buy gluten-free stuff or drop a ton of money and make gluten-free stuff. Unlike milk, where milk is milk, flour is not flour. One cup of regular flour equals 1 cup of white rice flour, plus some potato starch, plus some tapioca flour OR bean flour plus brown rice flour plus cornstarch plus tapioca starch plus sweet rice flour. OR some other crazy concoction. Oh my goodness, gluten-free is very overwhelming. I am so very grateful that some very wonderful people sat down and figured all this out ahead of me.
Personally, I'd prefer to drop the money on prepared foods and cook sparingly. But we really can't because we are also soy-free. Soy-free is the worst of them all. Soy is a substitute for dairy and for wheat. I could find a decent spot in a grocery store for gluten-free foods but out of that spot maybe one or two items have no soy in them - even in the big stores like New Seasons. At the wonderful specialized gluten-free bakery in Portland, I have to call even them up ahead of time to order special soy-free goodies, where they have to go out and buy specialized soy-free ingredients to meet my personal need.
I am very grateful for living close to Bob's Red Mill. http://www.bobsredmill.com/ They have all of these flours and then some. It's overwhelming. I went with a couple of recipes and bought the flours I needed. Instead of having one bag of flour I now have 5. FIVE(!) and I found that I actually missed one that I needed - which is a real bummer because that is a haul to go to that store. So I will actually end up with SIX flours to fulfill the duty of one bag of flour that I had before. That's a lot of shelf space I don't have. It's frustrating to me to see all of those bags of flours in the place where my mixing bowls used to be. But this way, I have the most control over our foods.
I am also grateful for Facebook. There are lots of people out there in my own friend community that have gotten me started. And I certainly recommend going to one of these stores, whether Bob's Red Mill, or Trader Joes a with a friend who has already walked the gluten-free road. That was so helpful to have an experienced mom guiding me through the store. I never would have made it out alive. I was so overwhelmed. There are also pamphlets available in stores like New Seasons, and Whole Foods that also guide you through it. I checked out every book in the library. I have to recommend the book Living Gluten-Free for Dummies. I'd insert the picture here if I knew how to do it. Tomorrow we are going out of our house all day and we will have to totally plan every meal before we walk out the door. We can't get caught without our own foods because we don't know how to navigate the outside world. It'll be a hefty challenge for us as we are so new at this. But if we can succeed at something that monumental this early on in the game, we will increase our freedom a ten-fold. I can only describe the feeling as leaving your kid with a babysitter you barely know. What if we don't have food and my kid is hungry than what do we do? We can't just walk into a Safeway and walk out with food and eat (unless you eat dirty fruit)...nor can we walk out of a Trader Joes even though there are more possibilities there and eat because I still don't know what I am doing. It's very nerve-racking. I can walk into a Costco and get a smoothie - God Bless them! I can walk into any Jamba Juice and also get a smoothie. I am excited to increase my "I Can" list, but right now I only know those two things. Wishing us luck!
Peace to all.
Love, Susan
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