Thursday, December 13, 2012

The Gluten Conspiracy

Don't worry, I'm not about to go off on some tangent about how gluten is the devil and the government is covering it all up in order to subsidize wheat farmers. Gluten is the devil, however, at least when fed to my child.

See, that's what all this has come down to. Well, not all, but at least the problems Bear has been having for the last few months.

Let me back up a bit. When Bear was first diagnosed with ADHD and ODD in the spring of 2009 (is that all????), my very cautious family doctor wouldn't start him on meds until we had his heart tested. Off we trotted to the local medical lab for the test, the results of which prompted a phone call from our doctor. The tests had shown an abnormality and he was referring us to a pediatric heart specialist for further testing. We knew it would be six months to a year before we'd get into the specialist and then probably another few months before we'd get any meds sorted out, so we decided to visit a naturopath in the meantime. (For the record, Bear's heart was just fine. The machine had been calibrated for adults, not children, so his results were quite normal. Grrrrrr...)

The naturopath suggested we test Bear for heavy metals and food sensitivities, so we did. Heavy metals came back normal, but the results of the food sensitivities showed that Bear was off-the-charts sensitive (no kidding...our naturopath had never seen results like this) for eggs, gluten, soy, sunflower, and casein. We eliminated everything and fed him nothing but water and grass for three weeks. Fine...kidding...but we did eliminate all the offending foods and stuck to that diet for over two years. The difference in Bear's behaviour was night and day. His aggression and defiance nosedived (nosedove?), and his ability to concentrate increased noticeably, all within a week. This was a whole new Bear.

Every now and then over the course of the first year we would either test Bear with one of the offending foods or discover the hard way that he had eaten some of the forbidden fruit. (Don't believe me? Read A Boy, a Granola Bar, and a Suspension.) He would immediately spiral back into days of aggression and meltdowns. We learned to cancel all plans and just ride it out. After the first year, we decided to just keep on truckin' with the diet -- no more trying to reintroduce anything.

As it happened, we were at my in-laws this summer and they invited us to stay for dinner. As we hadn't planned on staying, we had nothing for Bear to eat. Oh well, we thought. We hadn't tested Bear on gluten in probably a year, so why not try him with a sandwich and see what happens. The poor little guy was in seventh heaven with his peanut butter and jam on white bread.

The next day we waited for the big kaboom...and we waited...and we waited. So we gave him some more gluten. And we waited...and waited...and...nothing. We put everything back into his diet and we didn't notice any change in his behaviour. Hallelujah!!!! Suddenly, we were back to living like a semi-normal family. Bear ate like a horse; he put on pounds and grew inches. It was amazing. And still no problems.

School started, and no problems. If anything, he was doing better than ever before. The teachers and administrators couldn't get over this "new" Bear.

And then it started. The regression. A behaviour here. A behaviour there. About a week ago it became apparent that something needed to be done, so I called the doctor to get an appointment. Knowing it would probably be a few weeks (months?) before we could get in, The ODD Dad and I discussed putting Bear back on his diet. Should we? Shouldn't we? Would it help? Would he do it?

So we did, except this time we only removed gluten. Bear had the worst reaction to gluten, so we figured we'd start there. Within five days, Bear had re-emerged from under the cloud of anger and aggression he'd been living under for weeks (months?). My Bear. My sweet Bear. My loving Bear. My funny Bear. My precious Bear. My baby Bear.

He's back.

I missed him.


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  3. I just stumbled upon your blog in searching diets for ODD children. My 7 year old was just diagnosed, I'm frantic to find answers and help and feeling alone, and here is your blog, feel like you're writing my life. SO uber thankful!

  4. I am so thankfully I have chanced upon your blog...I was in the midst of a pity party for myself and asking "why me/us?". Of course my little girl did not ask to be born with ADHD/ODD. One thing you have reminded me of, is that I am actually the perfect person to have a child with ADHD/ODD. Similar to what I sense in you, my humor and my ability to wake up every morning with a smile, a clean slate and ready for another day is just the type person my daughter needs. (Yes some days I am slower at getting out of bed....) Thank you for being you, for being present, and for being a great mother!

    Besides saying "ditto" (or "tambien" in Spanish) to most of your blog posts, I am also living "the life" except here in Barcelona Spain. I am originally from the USA but am here with my husband and three girls for a few years. We always wanted to temporarily live abroad and we have certainly been living much more than the abroad experience these past two years! We always knew our middle daughter was a bit more than head-strong, spirited, and energetic. After three months in Kindergarten her school demanded...I mean strongly suggested with an ultimatum... that we have her evaluated. Of course this happens when we leave Boston with some of the greatest children's healthcare providers! But we made many many phone calls, appointments and finally found a psychologist who spoke English. Did I mention we do not speak Spanish?? (My husband does but the rest of us are still learning.)

    I was a bit relieved to know my suspicions were right and that she really could not control these things she said and did. Though that was, and is, just the beginning of our struggle to get help. We have found the process difficult especially since ADHD and ODD are not so widely accepted here in Spain and we do not have an endless supply of money.

    She is currently on medication (concerta) and has had great improvement at school. In fact last year her report card said she could only count up to 20 correctly and she knew about twenty sight words... well six months later she is in an accelerated math and reading program! That is the great news and the good news is I used think when my phone rang everyday," what had she done and did they want me to come in"- now I just wonder is she will receive a bad behavior report today and whose parents will we have to apologize to for hitting or pushing. I don't mean to make that sound cavalier because we do have serious discussions with her about appropriate behavior and others' personal space and feelings. The reminder is then given with the hug and kiss as U drop her off to school every morning.

    It is amazing how your perspective of a "normal life" changes month to month. We still stuggle with the highs and lows of the day and week with her behavior...the hard party is the uncertainty of not knowing what the exact triggers are....they still seem different day to day.

    She now sees a psychiatrist and a psychologist and is on medicine (that we are still trying to regulate and work out since her small size is a concern). I do keep her off food-coloring and I would like to have her tested for gluten as I have read previous reports about its effect on some children. Maybe you have a website or recommendations you can give on how to start going gluten-free??

    I feel like we are finally moving forward which is a great place to be when I think over a year ago we were wondering if there were boarding schools for her ...though I knew in our hearts we really could not send her away even though we felt it was destroying our family as a whole.

    So again, thank you for your blog. I found it at a critical time when I was starting, once again, to doubt myself and my parenting ability!

    Abrazos (hugs),
    *~Laura Kennedy


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