When It's Not A Choice

I have a seventeen year old daughter. At the age of eleven she was diagnosed with celiac disease, and a long, slow, uphill battle began. The learning curve was huge, overwhelming, and at times depressing as hell. Telling a child she can no longer have birthday cake at a party, she can't eat pizza, she has to take her own food everywhere she goes. Sleepovers become a major production. Schools trips become something that can never happen. There's a bit of a grieving process, and grieve we did – and the battle continues.

Celiac disease is much more serious than most people think. People with celiac disease have a much higher rate of bowel cancer. They suffer from infertility, they have a higher rate of mental illness (gut chemistry and the brain are closely related). My daughter suffers from severe bone loss; she has osteoporosis equivalent to a woman in her seventies. Her gut doesn't absorb nutrients properly. She has chronic low iron, and has to take a handful of different supplements every day. Her height was stunted substantially – she's five foot three and her projected height was five foot nine. We see a series of doctors in three different cities on a regular basis. There are endless tests, blood work, bone scans etc.

My daughter cheats. She admits this to me. She goes out with her friends and they order pizza, or make a box of Kraft Dinner and she has some. I struggle with this. I get it – but the health ramifications are huge, and it makes me sad and disheartened; I'm angry with her for cheating, and at the same time it breaks my heart a little; I understand that she just wants to be “normal” and eat junk with her friends and not have to pack food with her everywhere she goes. It's not a choice for her; she has an illness and it affects her life in so many ways – things that most of us just take for granted.

I want her to be healthy so I lead a double life. My daughter wants to be vegetarian, but it's really hard to get the right nutrients into her damaged body, so I often encourage her to eat meat for the calories, and some of the vitamins (B12), and for the protein. At her age she's not big on things that I would eat (beans, sprouts etc.), so while she's mainly vegetarian I buy meat for her and prepare it whenever she agrees to eat it. Many, many prepared vegetarian and vegan foods contain gluten. If she wanted to be vegan, at this point I would discourage it. It's my inner conflict and I struggle with it daily. I work full time and I admit I'm not a good “planner”, I often come home and have no idea what to feed her, or what to buy for her.

I can choose to eat whatever I want. I can choose to be vegan. I can choose to eat gluten. I can choose to not eat gluten. And while I lecture, and cajole, and beg, I don't really understand what it is to be in her position – because I'm not in that position. When I was a teenager and wanted to fit in (and don't we all want to fit in as teenager?) I just ate the pizza with everybody else. My daughter is shy, and she hates to draw attention to herself – I can relate to that – if you want attention, just tell a room full of people that you're a vegan and wait for the fun to begin! But I have a choice.

I hope that as she ages she broadens her scope and tries new things. I hope she sees that the foods I eat are really good, and I like to believe that she'll choose to look after her health and make the right choices. I hope she realizes that those slices of pizza aren't worth the damage they cause. I try to eat well in front of her, and I try to talk about good foods, nutrients, places to get protein that aren't meat, why she should eat more produce etc. I try to do all that stuff; but it's hard, and sometimes I come home from work and eat a bowl of cereal for supper.

I took my daughter to Paris a couple of years ago – land of bread and all manner of amazing baked things. And she had to walk around and see bakery after bakery and smell those amazing smells and not have any of it. That broke my heart a little bit too; because that's what Paris is famous for and it makes me sad that she had to miss out on that, and will always have to miss out on that. Sure, there's gluten free baked goods – most stores have them now – but it comes down to choices again. There are so few things that she can choose, while most of us have a gazillion food choices and we take it for granted. For her, being a vegan, or even a vegetarian is so much more difficult – so few choices. Wheat is everywhere, and in so many things, the poor kid can't even work somewhere that has flour – no restaurants, bakeries etc.

Ultimately so many things come down to choices, forced or not. Fortunately my food choices are just that – I can decide. She and I have found a cupcake place downtown that sells vegan, gluten free cupcakes. It was like winning the lottery. Small victories, but oh, so important ones. I wish fervently that restaurants and bakeries and grocery stores continue to realize that they need to offer choices, because some people have so few.



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