This morning Jackson was set on ingesting dairy and gluten. I caught him taking a bite out one of yesterday’s gluten/dairy-filled waffle he had fished out of the trash can. I gave his mouth a quick finger sweep to try to be rid him of the forbidden food and avoid any more behavioral backlash than already probable seeing as he already chowed down some of his blue playdough (gluten) earlier this morning.
Some days this GFCF (Gluten Free Casein Free) diet seems impossible. The carefully prepared alternative dishes are either left on the table untouched or completely undone by Jackson’s sneaky methods of obtaining the forbidden foods.
I’ve been told by other parents that real behavioral breakthroughs came only when they made sure that their child did not eat even a smidgen of gluten or casein. I’ve come to the conclusion that the only way to ensure Jackson’s 100% compliance with GFCF is to eradicate gluten and casien from our house and never eat out (he has actually taken another child’s chicken nuggets at McD’s much to our chagrin). How could I possibly convince the family that we will no longer consume staples like our favorite Colby Jack cheese on flour tortillas, chicken and dumplings, and bagels with cream cheese? Is this diet even worth it?
I’d have to say yes…We didn’t jump on the GFCF bandwagon immediately when Jackson was diagnosed. Putting my three-year-old on such a restrictive diet without solid evidence that it would help him seemed a bit drastic. He had very sensitive skin, constant eczima, rashes, irregular bowel movements, plus the typical autistic behaviors (stimming, tantrumming, headbanging, no language, rare eye contact, withdrawl, prefered a spatula to toys, etc.).
Our developmental pediatrician suggests eliminating one thing at a time, which is what we did. We started with the family sensitivity: dairy. His older sister had developed a dairy sensitivity around age 3. First we tried switching Jackson to goat’s milk which did seem to clear up his rash a bit, but not completely. My mother gave me a book on digestive enzymes and we started Jackson on enzymes. Within a few days it seemed his eye contact had improved and he was less prone to tantrums, but still rashy.
Then we decided to remove dairy all together and continue the enzymes. Here’s where we started to see real improvement: eye contact was more likely than ever before, he was way more compliant, head-banging virtually stopped, and Jackson even made an attempt to echo a few words to request items like “food” and “chips.” We were thrilled enough to give up our favorite snack, cheez-its (torture to withhold them from Jackson).
Over the next five months we tried using only whole grains, further eliminating any sources of processed products, preservatives, additives, dyes, artificial sweetners, excess sugar, etc. Lots and lots of homemade food, fresh fruit and veggies, and my family was not complaining…too loudly. The wheatball soup didn’t remotely resemble fluffy white dumplings, but they obliged me. Jackson’s rashes and behavior seemed to worsen when eating whole wheat, so we decided to remove wheat. We saw some improvement again (not as dramatic as with the dairy removal), so we continued to slowly remove some of the other glutens as well (many of which are processed with wheat anyway).
After 6 months of dairy free eating and digestive enzymes, I tried re-introducing a little dairy taken with enzymes (starting with yogurt) back into his diet to see if he could handle it and to see if Jackson’s sacrifice of cheese was really required. It only took two days for me to determine that YES, dairy and Jackson cannot coexist peacefully! His quick behavioral regression across the board and bright red rash around his mouth were enough to convince me to go back to dairy deprivation. We tried the same thing after 6 months of gluten free (or as close as we could come to it), the behavioral changes were less noticeable, but by day two, he had the clownish red around his mouth…back again back again, jiggety jog. The next day his teacher asked me, “You do know that it takes 6 months to clear gluten from your system, don’t you?” ARRRRG!!! No I didn’t. We had just reached that pivital mark when I decided to reintroduce it!!!! GRRRR and DOUBLE GRRRR!!! My only consolation is that now maybe you won’t make the same mistake.
Gluten Free Casein Free at last?
In spite of our best efforts, Jackson has yet to complete an entire week without ingesting at least a smidgen of gluten, but he continues to improve overall. I believe this is only partly due to the GFCF diet; behavior training, lots of love, consistency, as well as cutting back on carbs, sugars, and additives have all been essential.
I don’t think going GFCF is enough; it’s not just about prohibiting certain foods, but also making sure the foods he is getting really count. So now we’re trying to boost his nutrition, getting in the green stuff and other veggies, protein, and a variety of meats and grains any way he will eat them. I have looked outside GFCF to other nutritional programs (like the Specific Carbohyrate Diet, and other gut-healing diets) for ideas of what might work best for Jackson.
80% of food’s appeal is in the presentation. Right now pancakes and bars are Jackson’s most accepted forms of food. Who knows the places spinach can hide? That nutrient rich leaf might be disguized as brownies, blueberry smoothies, or chocolate pancakes at our house. We are working on expanding his tolerance to knowingly eating the good stuff, but for now I’m stuck trying to figure out how to make a highly nutritious snack that looks and taste like his favorite carb: tortilla chips. Ideas, anyone???
Oh, and before you go through the ordeal of drawing blood for allergy testing: read my entry on allergy testing.
I was looking at the picture you included of Jackson with the rash around his mouth. I work with someone who has a facial rash that appears similar. Is this a typical reaction to food allergies?
As a side question, have you noted any improvement in your own or your family’s health during this process (as I assume that everyone’s diet is at least partly affected)?