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Canadian Celiacs Common Complainants
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3 posts in this topic

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

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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.

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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"!

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    • Welcome!   You were smart to think about cross contamination.  Although it is great that there are so many gluten-free options out there, in the beginning it is best to try a whole foods diet, until your son feels a bit better.  The learning curve for the gluten-free diet is steep.  It is better for you to get everything down before letting others feed him.   When I was diagnosed, my hubby had been gluten free for 12 years.  I thought I knew the drill and converted right over to those gluten-free goodies I baked him.  Turned out, like many of us, I had some food inolerances not related to gluten but as a result of gut damage.  So, additives like Xantham gum made me think I was getting glutened, but I was not.  So, again, try to stick to naturally gluten free foods that are less processed for a while.  When you do venture out, I use "find me gluten free" and read the reviews from celiacs (not a person who thinks gluten-free is a way to lose weight! )   Here are some great tips from out Newbie 101 thread:  
    • I have the same problem. Was told it was psoriasis but no treatments worked even injections. I was daignosed celiac in may, and noticed a year ago the palm of my hand would itch intensely then get small blisters. I believe they are both dh. Have been gluten-free since diagnosis but still have issues with both areas. Thankful digestive issues cleared but would love to know how long before they clear up? I hope we both get feed back and best wishes to you!
    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
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