The Good, the Bad, and the UGLY

So we’ve just entered Day 6 of our Gluten-free/Casein-free diet (GFCF). I had been leaning this way for a while because I have read a lot of testimonials of recovered children who are on a GFCF diet. (More about why it’s a good thing for them another day).

A friend and I attended a Gluten Seminar at Campbell’s last week and it just confirmed in my mind that we MUST do this for Gavin. EASIER SAID THAN DONE!!! For those of you who are wondering what the heck a GFCF diet is, let me explain. Gluten is a protein found in wheat, rye, triticale, barley, and spelt. Casein is the protein found in dairy. People with a sensitivity/allergy to wheat or dairy must cut out all foods containing these things. There has been much research done on autistic children and their body’s inability to process gluten and casein. (Again, more on that another day).

So, I came home and announced to Josh that we must start this and the sooner the better. We went through our fridge and pantry that night and were literally left with NOTHING we could feed Gavin. Gluten and casein are in EVERYTHING. (Some places gluten is found just to name a few:durum, semolina, flour, citric acid, malt, dextrin, modified food starch, vegetable starch, soy sauce, seasonings, vegetable protein, packaged meats, etc, etc, etc). It doesn’t help that Gavin’s all-time favorite food right now is Kraft Mac & Cheese (gluten and casein and just plain bad for him). Just for fun, go through your pantry and see what you’d be left with. I’ll bet you’d be surprised.

After many trips to the health food store, and many dollars spent, I had a few meager things to offer the boys (we’re doing this for Liam too-why discriminate?) I have to say I am (STILL) very overwhelmed by this. I basically have to throw out my cookbooks and recipes and begin again. It also makes it harder that Gavin is incredibly picky and won’t try new foods. But enough about my near panic attacks every time mealtime approaches.

Some good things we’ve already seen since beginning this diet less than a week ago:

• Gav’s poop has already changed in consistency. (If you read my previous blog, you’ll understand that this is a big deal).
• On the way home from school yesterday,without any prompting, Gavin says, “I played with teachers today, Mommy.” For those of you who know Gavin know that he has pronoun confusion and pretty severe echolalia (when asked a question, he repeats the question instead of answering). So by making this statement, he is entering into normal conversation WHICH HE DOESN’T NORMALLY DO.
• This morning he and I were sitting next to each other at breakfast and he looks at me and says, “I’m glad you’re my mommy.” (!!!!!!!) Once again, Gavin has never made statements like that. Most of his dialog are rote phrases we say a million times a day.

On the flip side, the doctor who conducted the gluten seminar stated that on this diet, it will get worse before it gets better. Gluten/casein acts like morphine in little bodies that can’t process it. So when removed from the diet, the body goes through withdrawal, much like a drug addict in recovery.

Last night, I think we experienced the beginning of this “withdrawal”. Gavin woke up around midnight screaming and talking incoherently. He literally screamed for a solid 15 minutes and could not be consoled. He sounded and acted like he was in incredible pain-it was very scary. Thanks to Josh’s patience and calm spirit, he was finally able to calm him down and eventually got him back to sleep.

I know that this diet is going to be so beneficial for everyone in our family, but it appears that it’s going to be really tricky too. Even today, Gavin was given cereal at school because one of his teachers forgot. THIS IS NOT A GOOD THING. This is one diet that you can’t “cheat” on. Even a tiny amount of gluten can set the whole process back days. Sigh……….

Tomorrow I’m meeting with a dear friend who is going GF/CF with her family too. We’re going to collaborate and plan meals and menu ideas so we at least have something to feed our families. I’ll post more when I’ve got some good ideas. So far all we’ve had is rock-hard rice bread and muffins. ICK.