Going Gluten Free (And broke!)

Today I wandered into the world of gluten-free shopping. Since Colin’s diagnosis of Asperger’s last Fall, I (information sponge of a Mom) have spent countless hours reading books, articles and scouring websites for information on therapies, remedies and diets. Over and over I’d smack into websites discussing a Gluten and Casein free diet for kids on the spectrucm.

The theory is that AS kids may not properly digest gluten and casein which form peptides that can actually turn into an opiate like substance in their bodies to which they then become addicted. Peptides may change behaviors, perceptions and responses to stimuli. If this is true, the child may then limit his entire diet to gluten and casein products because it’s what makes him feel good (like an alcoholic with a drink) even though it’s actually making him feel bad.

Andy and I had tossed the idea of trying to slowly go gluten/casein free (GFCF) but we couldn’t agree on when. Until this week…when our pediatrician took a look at Colin and ordered a barrage of bloodwork to rule out iron deficiency and Celiac Disease. UGH!!!

Until I have the full results of the bloodwork, I’m starting slow beginning with gluten replacements and toning down how much milk he drinks…but here’s the kicker…

Over the past year, Colin has completely self-limited his eating to carbs and dairy…hmm? Is there truth to the theory that he might be an addict? I’m beginning to think so. His gut is a mess (but I won’t elaborate), he’s exhausted all the time, his “belly hurts”, his behaviors are (off meds) out of control at times.

If it turns out he has Celiac disease…I guess I’ll go cold turkey on the gluten, but I’m not a cold turkey kinda girl…

So, I’d like to hear from any of you who’ve made this leap. Tell me how your child did…was withdrawal as bad as I’m imagining? And how in the hell do you explain to a six-year-old that he can’t have Kraft Mac’n’Cheese anymore (when it’s truly a food group in his world).

I started today to stock the pantry. Luckily we have some decent grocery stores but I felt like a total stranger in the land! I bought mixes and fixes. Two and a half hours and $200 later, Erin prounounced the Gluten Free Blueberry Waffles acceptable…we’ll have to see what Colin says (if it ain’t EGGO, it ain’t a waffle).

I might need some serious handholding soon.


2 Comments (+add yours?)

  1. Gabrielle Bryden
    May 04, 2010 @ 22:41:08

    My son Michael is 9 now, and he’s been on the gluten/casein diet since shortly after his diagnosis at 3. It made a huge difference and it was like he came out of a drug induced haze and his constant diarrhea – which he had for about 2 years stopped (his excema cleared up after the diet and his asthma has stopped completely – might be a coincidence but I’m happy). When he has infractions he becomes more autistic. It is easier to do when the child is really young, so good luck. He became less of a fussy eater once starting the diet so that was good. It is well worth giving it a go. Research is showing there is a link between celiacs and autism spectrum disorder – we never did a test for celiacs (because he would have had to eat gluten again for a few weeks) – maybe when he is older.


  2. Christiane Williams
    May 05, 2010 @ 02:05:03

    Welcome to the tedious and expensive world of gluten-free! This is an important step to make for an ASD child with gut issues, about 80% have food intolerances and gluten and dairy are the main culprits (in addition to soy, egg and corn, plus artificial colors, sweeteners and preservatives). The good news is, the inflammation of the gut will go down, if you take out allergens and that will really improve behavior! The bad news is, it can take up to 6 months of a completely gluten free diet to get the antibodies out of the system – most people who claim it didn’t work for them did not endure that long – and there are gluten traps in the form of dextrose or cross-contamination everywhere (forget going to a restaurant for a while!). We did an IgG and IgE blood test when our son was 3 (he is now 8) and eliminated all 32 (!) foods that showed up on the test. We also went on a rotation diet to avoid him getting allergic to the foods that were left. It was tough love for a while, withdrawal and detox big time for about 2 weeks. Today, he eats every veggie in sight and everything else, his allergies are down to just wheat, dairy and citrus fruits.
    So hang in there, only good things can come of it, but it will be tough!


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