Before the school year started, I purchased 10 hot lunches for each of the kids. For whatever reason, though, they didn’t use any of them until this month. One day when I was feeling particularly tired (and it wasn’t election day, although that was a TERRIBLE day), I convinced the kids to try hot lunch the next day. They were having cheeseburgers with fries so it wasn’t a hard sell. Gracie could even eat it, just without the bun.
The kids LOVED their hot lunch. They came home that night asking to have hot lunch again the next day. But I looked at the menu — teriyaki chicken and noodles — and once they heard what was being offered they changed their minds. However, they kept asking, and later that week Jackson had spaghetti and meatballs for hot lunch.
Spaghetti is one of Gracie’s favorite foods. Since she’s been on the gluten free diet, I have been making it with spaghetti squash or gluten free noodles, and she’s loved it every time. So, when she found out she couldn’t have spaghetti and meatballs at school because they would be regular glutinous noodles, she was crushed. She cried and cried, big alligator tears and wrenching sobs. I think it was the first time she’s felt cheated by the GF diet.
We talked about it, and I told Gracie that if she wanted to stop the GF diet, I could call the doctor and try to have an appointment with him. She agreed and told me to call the doctor so she could get off the diet.
I couldn’t bring myself to make that call.
It bothers me to prostrate myself before a doctor who won’t listen to me and doesn’t have the basic decency to return a phone call or email. Customer service is everyone’s job, no matter what kind of advanced degree they may carry. Lawyers know that not returning phone calls is likely to get a grievance filed against them; why don’t doctors have the same problem? There is no excuse for failing to alleviate the client’s concerns (or the patient’s, in this case).
I also thought back on all the other appointments with this doctor. At one of our first appointments, I told him that we gave Gracie digestive enzymes and that it was the most helpful thing we’d ever done for her GI issues. He told us to stop giving them to her. The digestive enzymes have helped her digest food better. Before we started giving them to her, we would see whole pieces of food in her diaper, and not just corn and peanuts. We could identify whole pieces of oranges, strawberries, carrots, broccoli, etc. Those foods should have digested, but didn’t. I worried about whether she was getting any nutrients at all from her food, whether her body was able to extract anything before expelling the food.
At our appointment with the awful dietician that the GI doc sent us to, she told us to stop giving Gracie her vitamins and Vitamin C supplement. Before we started giving Gracie her current vitamin regime, she would get every cold that came her way and had pneumonia multiple times each winter. When we started this regime (she gets half the dose of an adult multivitamin gummy and one Vitamin C gummy per day), she stopped getting sick. Now, she gets about one cold a winter and it doesn’t progress into pneumonia. She hasn’t had pneumonia since she was 3. She had it five times before that, multiple times per winter. That says a lot to me.
It seems backward to me that a doctor would tell us to stop the things that help our child but won’t give us the go-ahead to stop something that doesn’t help. Gracie’s blood test was negative for celiac disease, and she hasn’t responded to the diet at all, so it seems unlikely that she actually does have celiac. Also, Gracie’s diagnosed disease is known to cause gastrointestinal dysmotility — which exactly explains her symptoms; things either move through her too quickly or don’t move at all. That’s how it’s been her whole life. It explains why she’s not digesting her food, too — she moves it too quickly through her body and is unable to extract the nutrients.
The other thing that is stopping me from calling this doc is that he has not helped us at all. He has done nothing but make our lives more difficult. He has wanted to perform multiple invasive procedures under anesthesia without addressing my well-founded concerns. It’s hard for me to justify visiting a doctor who isn’t helping. If he could add something to our lives other than hardship, it would be easier to swallow.
Gracie really wanted me to make that appointment, and she kept bugging me about it. (She is a great reminder-er; she will let us know absolutely everything we might forget, multiple times, even before we’ve had a chance to forget it.) I finally told Grace that I didn’t want to go back to that doctor. I told her that any doctor who wants us to stop things that help and won’t let us stop things that don’t help isn’t really listening to us and doesn’t respect us. I told her that if we ever needed a GI specialist again, we would look for one who has seen other people who don’t feel pain, but we wouldn’t go back to this guy. She liked not having to go back to the doctor who wanted to scope her repeatedly, but still wanted to stop the GF diet.
After weighing all the pros and cons, we decided to let her try gluten again. She started with pizza (maybe not the best transition food) and loved it. She has had gluten in her food every day since then and has been fine. There has been no change in her bowel movements. This confirms to me that she does not have celiac; I would expect to see severe gastrointestinal repercussions from the gluten if she did indeed have celiac disease. That’s what I’ve always heard happens with people who do have celiac.
Ironically, she has not had hot lunch since going off the GF diet. She has not thought the menu items sounded appetizing — even the “gooey grilled cheese” didn’t sound good (she thought “gooey” meant “soggy,” apparently, but even after I explained the difference she was unwilling to try it). I can’t really blame her. My own memories of hot lunch include a lot of greasy napkins from sopping off the food. But now, Gracie is free to have hot lunch whenever she wants. She doesn’t have to worry about the gluten.
Thank goodness. We all have enough to worry about.