Lynn Robbins

Topics discussed

Contacting your child’s school
Menu ideas for school lunches, quick dinners, and sports snacks
Explaining Celiac to family members

Video Text

Family members and friends can be a particular challenge when you’re trying to follow a gluten-free diet. One of the ways it can be challenging is if they don’t take the diet seriously. They try to talk you out of it, or “Oh surely a little bit can’t hurt her.”

Right after my daughter was diagnosed, there was a holiday, and there was a family meal at my parents’ house and they put out a lot of snack food at toddler level that contained gluten – pretzels and crackers & cheese and we had to run around behind her saying, “No, no, you can’t eat that. No, no you can’t eat that.” And finally I said to my mom, “I’m just picking everything up and putting it up high because this is ridiculous.”

After that holiday I had a confrontation – a really bad, awful confrontation with my parents on the phone where I said – you know, “You have to support me and you have to support us. This is really serious.” And some time during the course of that conversation I mentioned to my parents that I was getting a lot of support from my cousin. My cousin has a diabetic child. Well, my father got angry with me and said, “How dare you talk to your cousin about this. Her child has something really serious. Diabetes is really serous.” Well that’s when I really lost my patience and I actually screamed and cried and cursed and said – you know – “This is really serious. And you know it’s really serious because you’ve seen how sick my daughter has been.” And they had seen it first-hand.

And after that conversation, my parents really got it. They were very cautious about what they – what food they provided for my child they almost went overboard to the other extreme of being so solicitous and so careful. It’s socially a very loaded situation.

When I talked with for example the school system about my daughter I always said “Celiac Disease.” I never said “Gluten Intolerance.” Or “Special Diet” because I wanted them to see it as something very legitimate, very important, very serious. So from my point of view, by telling the school “This is called Celiac Disease,” it’s “an auto-immune illness” would be the words that I use. Because when you say gastrointestinal, a lot of people think. “Oh well, if you get some, you’re just going to get a stomach ache.” And of course, for Celiacs, it’s the long-term repercussions that are more important. And that’s what I want to communicate to people. So I used this kind of almost catastrophic language because I wanted to get peoples’ attention and to get people to understand that compliance really wasn’t optional for us.