Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Tuesday, July 27, 2010

Leaky What?

One thing Bud could always have at social events, was cheese, so if there was a platter of cheese and fruit, she was home-free. After she started having wheat again, she could also have a roll and perhaps some crackers, if she could check the ingredients.

(This is another bone of ongoing contention at social events and in stores. When we ask to see the ingredients, we really need to see the ingredients. It's important. We aren't asking just to be a pain. But so often, people would just shrug and say, "I don't think it has corn syrup," and nine times out of ten, they'd be wrong. So many things from boullion, soups and sauces, to marshmallows, desserts and fake whipped cream, to most deli meats contain corn syrup. And many things from crackers and soup, packaged rice or noodles, to spices contain MSG. It isn't good enough to guess and just blow people off. You have to READ the ingredients, or better yet, let the person asking read them. Sure, sometimes this is difficult, but usually not, if you're inclined to be helpful.)

When people didn't want to be inconvenienced and check that list, she just had to do without. When Butterfly got a bit bigger and her tastes expanded, she could also have deviled eggs, as well as pasta and potato salads, especially if it was a "pot luck" style affair and I brought them. All and all, she got to where she was able to make a plate of food off the buffet without worrying about a reaction. The only problem with it was that the carbohydrate content tended to be predominant. But it's not as if these events happened that often. And now and then someone roasted a turkey, or made homemade moose meatballs, or something like that, which Bud was able to add to her plate as well.

Dark circles under her eyes?

But it so often seemed that every bit of good news was always accompanied by yet another challenge. Butterfly gradually became very lethargic. She was becoming a couch potato and she started complaining at regular intervals that she wasn't feeling well, although she wasn't able to be specific about what was wrong. There were dark circles under her eyes, and those eyes had slowly changed from bright blue/grey to a just a dull grey. All she wanted to do was sleep. She was putting on weight from the lack of activity, as well as her pubescent age. All and all, this was so very unlike the hyperactive kid we knew and loved. Clearly this wasn't just a stage. Something was wrong.

At this time, I was participating on an internet forum for homeschoolers. Many of the other parents on there had kids with similar challenges as Butterfly, so it was a fantastic source of encouragement, as well as an information exchange. One of the other moms sent me an article about a health problem called, Leaky Gut Syndrome. When I read it, it sounded exactly like Butterfly. *Leaky Gut is the inability of the digestive tract to absorb certain proteins and minerals, such as calcium. (Which also contributes to weight gain.) It appeared that Butterfly had developed an inability to digest bovine dairy products. Now, Bud loved cheese in particular. She had so many intolerances growing up, I don't know what I would have done without it. But it certainly seemed at this point, that it was giving her some very profound problems. There was really only one way to find out.

There was no point in going to the doctor. He would probably only refer us to the pediatrician again ~ another exercise in futility. Butterfly's problems were clearly quite beyond him and he had already demonstrated an unwillingness to inform himself. We were on our own. But Bud was old enough that she had to be a willing participant in the experiment. I mean, there was nothing to stop her from going to the fridge for a piece of cheese when I was busy elsewhere if she wasn't on board. So we discussed it, and she was very simply at the stage of not feeling well that she was willing to try anything, even if it meant giving up her beloved cheese.

Alternative dairy products were not new to me. I had been on a dairy-free diet for years because of the colitis. It just wasn't something I always pushed onto my family. But now I stopped buying ice cream and bought the soy or rice alternative. I had been making chicken stroganoff all along. I switched the recipe from beef to chicken (because I couldn't have red meat), used chicken stock and tomato paste for the sauce, and used soy sour cream at the end. There were mushrooms and broccoli in there, and I served it on a bed of whole wheat noodles or brown rice pasta. It was a family favourite, so I made sure to make it a couple of times during our dairy-free two weeks. Nevertheless, keeping a growing girl happy without dairy was a tad more challenging than just making the adjustment for myself. After much experimenting, some of it blech-worthy, according to Bud, we settled on some alternative products that she liked, such as soy vanilla and chocolate milk. Both went well on whole grain cereals. She didn't like the dark, milk-free chocolate so much, so I focussed on dried fruit snacks for treats. Fruit and peanut butter had to fill in for those cheese snacks too, etc.

Feelin' better.

By the end of two weeks, the change in Butterfly was once again amazing. The dark circles were gone from under her eyes, which were again bright and vibrant. Her energy had returned to the point where she was driving me crazy. This was good! She had stopped complaining about dull, non-descript pain, anywhere. We had obviously found the source of her problem. But she was not happy. Butterfly LOVED her cheese, and when she realized what the results of our experiment meant, she became very resistant. She refused to eat ANYTHING if she couldn't have a cheeseburger and some mac and cheese.

I hated to do it, but it was moment of truth time. I bought her an organic mac and cheese mix, and some cheese slices and made her the mac and cheese for supper that night. She didn't look too good, but she didn't complain. She got up late the next morning and asked for her cheeseburger. I could see what was coming, but I said nothing and got to work on her burger. Within an hour after eating it, she looked very ill indeed. She was holding her stomach and kept rolling into a fetal position on the couch. She was in a lot of pain, obviously, and she kept saying her stomach hurt a lot. She was in so much sharp, terrible pain, that she actually asked to go to the hospital. But my instincts told me that getting into the car right then would be a very bad idea. Sure enough, within ten minutes of this, she upchucked. And I mean... now I don't want to gross anyone out, but I had honestly never seen any kid barf that much all at once in my life. When I thought she surely must be done, she barfed some more. I was half expecting a lung to come roaring out.

When she really did seem to be done, I helped her get cleaned up and I put her in my bed, which was easier to tend to her from. Yes, I wound up changing the bed, but the worst was over at least. Butterfly never insisted on eating anything with dairy again. And so, once again, we got on with life.

*Info on Leaky Gut Syndrome posted on Resource page


  1. I just had to laugh at this one at the end, but in an "Oh, poor you guys!" kind of way. :/

    Can she have raw dairy or goat dairy at all? We have had great success with slowly introducing those. We also use a lot of coconut milk since soy kind of freaks me out with the pseudo-estrogens and stuff. I love chocolate almond milk myself if nuts are acceptable.

    In one sense, we're lucky we have all of these alternatives, but then I think if scientists and companies and gov't would quit messing around with food and it was ACTUALLY food, then we wouldn't have all these darn issues in the first place!! ((sigh))

    I love the smiling pic! :)

  2. Hehe.. I know just what you mean. Like I said, I hated to do it, but.... It was for sure a proper clinical test of the Leaky Gut theory. ;o)

    Bud doesn't like coconut milk.. it's one of the things she considers blech-worthy. We went back and forth with the soy and almond products for awhile. We never tried raw milk, but she likes a few goat milk products that don't seem to bother her. :) I'm going to try some myself, soon.

    And I agree with you. Just good food, produced in a healthy environment, without all the crap added for longer shelf life or producer convenience would be good, wouldn't it?

    Thanks! Her smile was what told me we were on the right track. ;o)

  3. It blows me away how different they look when they are reacting vs healthy. PANDAS' moms will tell you this time and again about photos especially.

  4. Yep. I can go through our album and pick out the ones taken when Bud was in reaction. They sure help me remember. :)