Canadian Celiacs Common Complainants

ResearcheringCeliac · January 20, 2005

Dear Members,

I am a Canadian researching Celiac. I have been unable to discover three things through websites dedicated to Celiac and through journal articles pertaining to Celiac. As you can tell from the questions I am not researching for medical purposes. I am trying to gather information for a freelance article and also for a marketing research project.

As I read about celiac, especially in medical journals, I find little concerning the psychological or societal ailments faced by suffers. Instead I have discovered a lot about physical ailments suffers face. I am hoping that you may take the time to post a response to my query or email me directly to fill in the blanks. The questions I have are:

What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

What are the common complaints?

i.e. about Gluten Free products?

What social stigma and limitations?

Any help will be greatly appreciated.

Regards,

Michael

Carriefaith · January 20, 2005

What obstacles do people with Celiac disease face?

At Work/University - The biggest obstacle is not being able to eat when friends/co-workers go out to eat. I refuse to eat out anymore (unless it's lobster) due to such a high risk of gluten contamination. So when I go out to eat I just order a drink and that's it. I will usually eat before or after I go out. The odd time I will bring a meal with me and heat it up.

At home - The biggest obstacle is making sure none of my food gets contaminated, since I am the only celiac in the house.

What are the common complaints?

Trying to find gluten free mainstream products (e.g. mainstream products that use dedicated lines).

Gluten free products are expensive!

What social stigma and limitations?

If I go out (and usually going out involves being in a place where people are eating), the topic of my diet and me being celiac almost always come up. I have to explain it all to new people and people are always asking why I'm not eating and why I can't eat that. I actually don't mind explaining the diet to people but sometimes I just get tired of talking about myself all the time, but people are just curious I guess.

January 29, 2005

Yes, going out is a big problem. I seem to just get a restaurant educated and then it will change managment and menu, and I'll have to look for another place. It's really stressful at times as my hubby refuses to go and get a lunch if I can't eat. That's a real problem when we live an hour from town and spend several hours shopping, appointments etc. Believe it or not, this diet does cause conflict in the family. Not only about eating out, but also how well gluten bread and cookie crumbs get cleaned up etc. We Celiacs tend to get a bit paranoid and the family members get defensive. Not a good combination.

One of my big beefs is the labeling of ordinary foods. There are many foods out there that we could eat, but they end up putting things like 'natural flavouring' or 'modified starch' without specifying what it's made of. We need better labeling!

Time !!! You wouldn't believe how much time it takes to read labels, phone companies to varify, drive from store to store to find products, (not to mention the extra gas expense), cooking and baking gluten free is so much more time consuming.

Being a member of a club that holds some of it's meetings at restaurants is a problem. Thankfully the kennel club has started asking me about safe places when they are planning. But the consession stand is still out during the dog shows.

Explaining to family and friends why you get nervous about staying at their homes when traveling, or for that matter, avoid travel altogether. It's constantly worrying about something that is so basic to living as "Food"!