I am creating this post to talke about the GFCF products I use. Here is a working list of what I currently use (I will likely edit this from time to time to add new things so check back!):
Mixes for pizza crust, breadsticks, all purpose mix, cinnamon rolls etc from www.chebe.com
Ener G foods: Egg replacer, GFCF bread crumbs, pretzels (we use the circle shaped Wylde ones that are also soy free)
Enjoy Life Foods: dairy free chocolate chips, snack bars (very berry and caramel apple - Josh doesn't like the choco loco ones)
Kinnikinnick Foods: KinniKritters animal cookies, smoreables (graham crackers), KinniToos chocolate and vanilla sandwhich cookies.
Chex Cereal: I use both rice and corn chex cereals. Just found out Honey Nut Chex cereal is gluten and casein free so I'm gonna get me some!
Cherrybrook Kitchen (www.cherrybrookkitchen.com): Vanilla Graham Mini Cookies, Pancake Mix, Frosting Mix
Betty Crocker: They now have a gluten free brownie mix I love, as well as yellow and chocolate cake mixes. I haven't had luck with the chocolate chip cookie mix...they just crumble and fall apart on me..who knows??
Saturday, March 13, 2010
Friday, March 12, 2010
Gluten and Casein Free Diet or GFCF 101
I am starting this blog to hopefully answer the many questions that come my way about what the diet is, what it entails and how to get started etc...
We use the gluten and casein free (GFCF) diet as part of our autistic son's many treatments. The theory behind the diet is that children on the autism spectrum don't digest the gluten protein (found in wheat, oats, rye, barley and miscellaneous other ingredients) and casein protein (found in dairy products...i.e. milk) and end up with an inflamed and perforated (leaky) gut. These undigested proteins then escape through that leaky gut and enter the bloodstream where they travel to the brain and act as opiates. This can interfere with functioning and their ability to access other treatments designed to help them. For us it is a baseline to help us provide the ABA, OT and Speech therapists with a child who feels better and functions better...increasing his chances for success with what they are working on. That is our premise for everything we do biomedically. One of any of these things alone will not recover my son. It is the balanced and well rounded treatment module that gives him the best chance.
However, not every parent of an autistic child who hears of the diet does it. I hear all the time that parents don't do the diet because it is too expensive and too hard. My answer to that is yes and no to both. You can cut costs by being willing to put the time in to making things from scratch like I do with my bread, and hamburger and hot dog buns. But there are also items out there that are inexpensive and you can do a lot with them. (Check out http://www.chebe.com/ to see one of my favorite source of mixes you can do a lot with!)
Another excuse I hear is that their child is so limited already as to what they will eat. Further investigation usually leads to me finding out that most of the limited foods they will eat contain gluten and casein. Hence, their child is likely addicted to an opiate effect of these foods and would more likely benefit from it!
Another reason given is that the diet isn't proven to work. Well, it isn't proven not to work and you cannot ignore the thousands of families stories of improvement, including our own, that show it is making a difference. My son was less out of it and more in tune to everything around him when we made the change. And to test things, after about a month or so of going casein free, we gave him milk one weekend to see how he'd react and I found myself with a child that was loop and out of it like I'd shot him up with drugs. No thanks, we'll pass.
Was I as capable or comfortable as I am now with doing it? No. At first it felt like a barrier between me and the rest of the world but as time went on and I figured out how to do more and where to find more and just plain became more comfortable with it....it just became part of our life. At the time I am writing this post we have been casein free for 3 years and 5 months and gluten free for 3 years. It isn't always fun....for instance, although I love getting invited to birthday parties for others it has taken it's toll on my enjoyment a bit at times because it involves a whole lot of extra work for me with a child that requires so much effort in so many areas. I'm not only picking up a gift...but I am also finding out ahead of time what will be served and making time to prepare a gluten/casein free alternative. I will be doing this very thing tomorrow as I make GFCF free pizza and cake.
But no amount of extra work or cost will ever make me not do this and the "diet" will not keep us from everyday life. For the value I place upon it is equal to that of chemo for a cancer patient. I always say that if my child had cancer, needed chemo and the nearest treatment facility required a long drive every day and a ton of gas I wouldn't think twice about doing it. Just as a child with cancer deserves every chance to survive, my son deserves every chance/opportunity to feel and function better. He deserves every chance he can get to have a better recovery and more success. I just wish other parents gave the diet this amount of respect and priority and gave it a shot. Our kids deserve it.
I started out removing casein because that was much easier to accomplish but when it came to going gluten free, I had to "get over myself" and my fears and excuses and just do it. So don't think I was gung-ho on it from the get go. It just came down to the fact that my son deserved 100% effort and I had no right to let my issues/fears/excuses get in the way. I felt I was short changing him if I didn't attempt it and see if it made a difference for him. Thanks to the support and assistance of my mother-in-law who flew in armed with information from the celiac group she'd joined on her grandson's behalf, we did go gluten free and plugged on. I ended up with a child more connected to us and to his world so every bit of everything I do with regards to the diet is completely worth it.
Well, I'm tired tonight and going to head to bed but will be back soon to start with the basics and hopefully start my GFCF 101 guide for those who need it.
Love, Sherry
We use the gluten and casein free (GFCF) diet as part of our autistic son's many treatments. The theory behind the diet is that children on the autism spectrum don't digest the gluten protein (found in wheat, oats, rye, barley and miscellaneous other ingredients) and casein protein (found in dairy products...i.e. milk) and end up with an inflamed and perforated (leaky) gut. These undigested proteins then escape through that leaky gut and enter the bloodstream where they travel to the brain and act as opiates. This can interfere with functioning and their ability to access other treatments designed to help them. For us it is a baseline to help us provide the ABA, OT and Speech therapists with a child who feels better and functions better...increasing his chances for success with what they are working on. That is our premise for everything we do biomedically. One of any of these things alone will not recover my son. It is the balanced and well rounded treatment module that gives him the best chance.
However, not every parent of an autistic child who hears of the diet does it. I hear all the time that parents don't do the diet because it is too expensive and too hard. My answer to that is yes and no to both. You can cut costs by being willing to put the time in to making things from scratch like I do with my bread, and hamburger and hot dog buns. But there are also items out there that are inexpensive and you can do a lot with them. (Check out http://www.chebe.com/ to see one of my favorite source of mixes you can do a lot with!)
Another excuse I hear is that their child is so limited already as to what they will eat. Further investigation usually leads to me finding out that most of the limited foods they will eat contain gluten and casein. Hence, their child is likely addicted to an opiate effect of these foods and would more likely benefit from it!
Another reason given is that the diet isn't proven to work. Well, it isn't proven not to work and you cannot ignore the thousands of families stories of improvement, including our own, that show it is making a difference. My son was less out of it and more in tune to everything around him when we made the change. And to test things, after about a month or so of going casein free, we gave him milk one weekend to see how he'd react and I found myself with a child that was loop and out of it like I'd shot him up with drugs. No thanks, we'll pass.
Was I as capable or comfortable as I am now with doing it? No. At first it felt like a barrier between me and the rest of the world but as time went on and I figured out how to do more and where to find more and just plain became more comfortable with it....it just became part of our life. At the time I am writing this post we have been casein free for 3 years and 5 months and gluten free for 3 years. It isn't always fun....for instance, although I love getting invited to birthday parties for others it has taken it's toll on my enjoyment a bit at times because it involves a whole lot of extra work for me with a child that requires so much effort in so many areas. I'm not only picking up a gift...but I am also finding out ahead of time what will be served and making time to prepare a gluten/casein free alternative. I will be doing this very thing tomorrow as I make GFCF free pizza and cake.
But no amount of extra work or cost will ever make me not do this and the "diet" will not keep us from everyday life. For the value I place upon it is equal to that of chemo for a cancer patient. I always say that if my child had cancer, needed chemo and the nearest treatment facility required a long drive every day and a ton of gas I wouldn't think twice about doing it. Just as a child with cancer deserves every chance to survive, my son deserves every chance/opportunity to feel and function better. He deserves every chance he can get to have a better recovery and more success. I just wish other parents gave the diet this amount of respect and priority and gave it a shot. Our kids deserve it.
I started out removing casein because that was much easier to accomplish but when it came to going gluten free, I had to "get over myself" and my fears and excuses and just do it. So don't think I was gung-ho on it from the get go. It just came down to the fact that my son deserved 100% effort and I had no right to let my issues/fears/excuses get in the way. I felt I was short changing him if I didn't attempt it and see if it made a difference for him. Thanks to the support and assistance of my mother-in-law who flew in armed with information from the celiac group she'd joined on her grandson's behalf, we did go gluten free and plugged on. I ended up with a child more connected to us and to his world so every bit of everything I do with regards to the diet is completely worth it.
Well, I'm tired tonight and going to head to bed but will be back soon to start with the basics and hopefully start my GFCF 101 guide for those who need it.
Love, Sherry
Monday, August 24, 2009
What receiving the diagnosis can feel like?
You bring home this child from the hospital who has all ten fingers and all ten toes and you count your blessings that you have a healthy baby and look forward to your life ahead. We did exactly that. Over the first two years we loved and adored our son. He was a gift to our lives and I fell madly, deeply in love with him. At 20 months of age, we moved from MO to CA for my husband's job. We drove over the course of a weekend to CA and upon waking up on our first morning in CA, our son developed a pretty bad case of diahrrea. A trip to urgent care got us some medication for him and within a week he was back to normal. Those first 4 months were crazy and anything but typical as I worked feverishly to get us all unpacked and moved in to our rental home. My son didn't need constant attention which I was thankful for with what all I had to get done. At the end of that 4 months, we celebrated our son's second birthday with a few new friends I'd met through bunco and playgroup. Around that time, my son started to grow more and more distant. By 2 1/2 when we went in for his 2 year visit (delayed because the urgent care had done a physical, yet they failed to ask developmental questions, and we were told we'd have to wait or insurance wouldn't pay because of the checkup/physical aspect of that urgent care visit) I had grown increasingly worried about his speech not being as far along as I thought it should be by then. I was given a referral to see a speech pathologist and went for an evaluation a month later. By this time it had also grown increasingly difficult to get my son's attention when calling his name. We knew his hearing was fine because he would turn to low volume noises but yet we had to scream his name to get him to respond at times. Anyhow, the speech pathologist advised she thought there were some sensory issues and that we should have him further evaluated by the regional center...though she would continue to do speech therapy with him. That was the end of May. I called and completed an extensive phone interview with regional center and a date for an in-home evaluation was set for late July. That in-home evaluation was tough to watch as many of the tests they tried to do with him were unsuccessful and at the end of it, that was when I heard the words for the first time..."It isn't official but we're so sure we are going to go ahead and start services....we believe your son has autism." Holding his 6 week old younger brother in my lap, I started to tear up as I muttered something back...I think I said okay but honestly don't know for sure. Being postpardum and already dealing with hot flashes and nausea from having the baby, i think I muttered something like okay and teared up. Shortly after I ended up being hospitalized for more intense nausea and vomiting. During July and August I was hospitalized a total of 3 times (5 days a piece) because I became so depleted. (Thanks to my mother-in-law for coming back out to care for the kids when I couldn't so Mike could work and keep his job.) I know the stress of the diagnosis made the problem critically worse...but am thankful I was in the hospital as they discovered a pulmonary embolism that could have killed me. In August, the first play therapist started coming twice a week to our home. I missed the first session, maybe two as I was completing my last of 3 hospital stays but thankfully was better once and for all when in week 9 post pardum I awoke and the nausea was suddenly gone. Funny, that is the time when they say your hormones officially reset from pregnancy. Although I attribute divine intervention thanks to the youth minister and associate who visited me at the request of a friend and prayed with me...to helping me turn the corner as well. I went home to work to begin learning what this whole "my son has autism" thing meant and get back to my new baby I'd missed so much time with. Still emotionally a mess, I did end up seeing a therapist at one point, though exactly when is a blur. I do remember having a few days where I balled up in the bottom of my shower and sobbed uncontrollably. I suddenly felt unqualified to be my "autistic" son's mother. That my children would be better off without me or almost wishing they'd be taken from me because I couldn't handle all this. I didn't know how to help a child with autism. I'd hit rock bottom. We went September first to see the regional center psychologist for the "official" evaluation and diagnosis and the misery of completing page after page of a questionaire where most of my answers indicated "no my son can't/won't/isn't doing that" further beat me down. The psychologist ended up giving us a diagnosis of mild to moderate autism. We finished the visit and walked to our car where we got the kids in there car seats and sat down to leave and I lost it. I cried and cried and thought "how are we ever going to be happy", "how are we ever going to have a normal life and get to do all the things "normal" families do?"....with visions of soccer/baseball games in my head. Life felt over. It felt so unfair. I was a complete wreck....I remember my husband being silent a lot and I'm sure he said something but I can't recall what now. We went home (by then they switched our son's therapy provider and increased his sessions to 5 days a week)....and over the course of the next six months, I saw my therapist, watched my son's in home therapy sessions from another room (thanks to a small camera with a long, long cable hooked up to the tv in my bedroom) and learned in baby steps how to work with him. Whatever they did during session, i practiced with him later. We also endured a second evaluation by the school district as in October, when he turned three, he would also start in the school's special ed pre-school. Hating not knowing what he was experiencing all day every day, fearing the lost off control too....I also felt relieved for the break from autism for 3 hours a day during the week. Also at this time, I really struggled being around friends with typical kids, though I did it but I felt angry, thought why us and not them, and hid resentment for their not really knowing how hard we had it and that their kids turned out okay, but not mine. Slowly as I learned how to work with him, got used to the new life with the therapy and loss of some privacy, got used to his starting school, I developed some skills and some confidenct that would help me move forward.
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