Katie Barrett

Topics discussed

Finding gluten-free foods
Finding a support group
Celiac e-Mail lists

Video Text

If someone had told me that I needed an IV hooked up to me for the rest of my life and I was never able to actually eat food again, I would have been fine with it, as long as I felt better. At the beginning, you go from the stage of “Thank God we know what this is” to “Oh my Gosh, what can I put in my mouth?” It sounds like “Oh that’s not that big of a deal.” But then when the dietician says “No. No bread.” “Ok, but I can have white bread. Just no wheat bread?” “No. No white bread either.” “Oh, OK.” And no pizza crust, no pies, no pastries, no cookies. Then it kind of sinks in and it’s the most overwhelming feeling because you have no idea what you can eat -- gum, I mean lipstick, toothpaste. Anything,. You have no clue.

So the first few days I was just afraid to do anything and I was eating like plain chicken and green beans. And rice – ‘cause obviously rice – thank goodness someone told me right away that we could eat. So it’s just the most overwhelming feeling. The thing that got me through is: when I’d go to the grocery, it’d be so easy to walk through the aisles and say “Oh I can’t have this” or “I can’t have that.” But I just kind of bee-lined to what I knew I could eat. And that’s my best advice I give to people who are newly-diagnosed is: Find out what you can eat, go for that and every time you go back shopping, there’s always one more thing that you find that you can eat.

What I would say to someone newly-diagnosed is: You have options and you have support and you have to take advantage of those. You cannot do this alone. Especially at the beginning. But there are so many people out there who have gone through exactly what you have gone through and you need to use them for support. You have a million questions. I’m sure you have a million questions because we all did. But there’s someone who can answer all those for you. Be it a website, be it a contact, be it a support group. Even if you don’t want to be actively involved in the support group, sign up and pay the minimal fee and get the newsletter every month that someone else goes for you and calls all the restaurants and updates everything you can eat. You have to take advantage of those resources.

For me, personally I get very symptomatic. So I have the immediate reward of not getting sick. I have absolutely no will whatsoever to cheat because I know that I’m going to spend two days being very ill. But I also have quite a few friends I know who don’t get sick, so they don’t have that – that immediate reason to not cheat. And what I would say to them is: Just think about the future. It’s for your future. It’s just not worth it. There’s so many risks involved even from just accidentally eating a little bit of flour every once in a while. And I know it’s hard to think of right now when you’re feeling fine, but it’s just not worth those risks especially when there’s enough good gluten-free options now to kind of satisfy any craving that you’re having – it’s not worth cheating.

I’m Katie Barrett and I’m living my life with Celiac Disease