Interview: Don’t Believe Everything You Read on the Internet

Renee from Boston,  MA tells out co-founder Austin about her experience with celiac disease.

Austin: How long have you been diagnosed with Celiac Disease(CD) or a gluten sensitivity(GS)?
Renee: Since September 2008

Austin: How has having CD or a GS affected your life?
Renee: On and off. When I was a child, I had symptoms but no idea what it was, then they subsided for a long time. I started feeling ill at the end of 2007/beginning of 2008.

Austin: When was the last time you were “glutened” and how did that make you feel?
Renee: Two summers ago, I ate a piece of vegetarian sausage without looking at the ingredients, I had stomach pain for a week and woke up every day with a splitting headache.

Austin:  How often do you dine out versus eat at home? For example, how many meals per week/month do you eat out?
Renee: I only eat out once in a great while, financial concerns are as big (or maybe bigger) a factor in the decision to dine out.

Austin: Do you feel nervous when you do eat out? What are your ‘go to’ dishes when you do dine out?
Renee: Sometimes. I used to get very nervous but I learned to just ask questions initially, usually before I get there, and if I like the answers I get (knowledgeable staff, etc.) I will eat there, if I don’t like the answers, I don’t. I don’t really have any ‘go to’ dishes since I like a lot of different types of foods.

Austin: How do relatives, friends and/or servers at restaurants typically react when you bring up your sensitivity/allergy?
Renee: I have been blessed, everyone reacts with concern and interest on learning about celiac.

Austin: What is something that would make living with CD easier that does not currently exist? More GF products? Better Labeling Laws?
Renee: At the moment, easier ways to test than biopsy. Also tests that are not expensive and DON’T involve a “gluten challenge” to be accurate.

Austin: Do you have any advice for family members of those newly diagnosed with CD?
Renee: Go to celiac.com and read the boards there for advice, they are moderated by very knowledgeable people. Don’t believe everything you read on the internet (mustard and ketchup are gluten-free, no matter what you hear/read, and there is no gluten in envelope glue in the US). I could go on and on with examples, but I will just say try and get your info from reliable sources

Austin: Anything else you’d like to share about living with celiac?
Renee:  I am very lucky to have supportive family, friends, and significant other.  I hear from others that everyone isn’t as lucky as I am. If you can’t get support from those around you consider joining a support group or a reliable internet forum.

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