WeAreCeliac.org - The Social Support Network for People Living with Celiac Disease

Sundell

I hate having to explain celiac everytime I am offered gluten foods. They always asks what happens? I sure they really want to hear, "It give me the runs, and want to throw up." People I work with who know, watch everything I eat and ask can you eat that? I feel like a wierdo.

35 months ago

Nick

When I am on location for photo shoots people are always cooking for the crew.

I feel so bad turning them down. But, they soon understand.

This is usually followed by. "Well there has to be something I can make for you" Or they know I can't eat wheat (not understanding Gluten) and try to make wheat free items...Then I have to go in to the cross contamination issues.

In most cases I let it be known "I don't need food, don't need taken care of and I'll handle my own food. Thanks"

I travel with a small soft cooler and load it up with goodies to make it through the day.

35 months ago

Paxton

I tell everyone in hopes of raising more awareness. 4 people who I work with have discovered that gluten was causing them problems as well. They realized this after hearing my story and they never would have thought to remove gluten from their diet prior to that.  I wish I had heard of this disease proir to it triggering in me. I might have figured it out a lot sooner than I did. The main thing people don't realize is that gluten is in just about everything, so I try to share that info as well. 2-3 million people are estimated to have Celiac Disease but only 150,000 have been diagnosed. That's a lot of sick people walking around out there! 

35 months ago

Paxton

oh,  and just to clarify,  "2-3 million estimated to have CD but only 150,000 have been diagnosed"  applies to the US population. 

35 months ago

Sea

This question really depends on the situation. If I'm in a supermarket and some stranger offers me a food sample, I don't feel the need to share my food issues with them. On the other hand, if it is a situation with my peers (fellow grad students) or friends, I would probably indicate that I can't have wheat. If they ask questions, then I might explain that I can't have gluten. For the most part, strangers don't care about medical or food restrictions, and that's fine with me- until they need to know, they don't need to know, in my opinion. However, if the topic comes up, I'm certainly a fountain of information. heheh.

35 months ago

Sea

Oh- and all of my family and close friends know that I am gluten-free, so although I answered no, I did so based on the first question: Do you tell people why you refuse their gluten goods?

35 months ago

Allison

It's always akward the first time I bring it up, because it's usually when someone is offering me something I cannot eat. And then once I tell them, they feel horrible (as if they could've known!). But I have been finding more and more people who are familiar with it, and some of my friends who were clueless have become so amazing about it. I will never forget the day that a coworker text messaged me to make sure I'd be at work the next day because he had something for me that he couldn't wait to give me. I was so shocked & touched when he showed up with an individually wrapped gluten free brownie that he'd randomly found when he was grocery shopping. It was such a good feeling to know that he cared and knew how happy I'd be to get a brownie I could actually eat :)

35 months ago

akua

Why not?  Are you ashamed on it?  I try to raise awareness whenever I can.  My daughter and I both are celiac with multiple food allergies, so even if something is gluten free we probably can't eat it anyway.  And most people I wouldn't trust if they made something, because of the contamination factor.  I've been sick too many times.  I need to give some explanation of why I'm not eating anything, or why I brought my own food.  I've also found more and more that people know someone that has it, so it seems to be getting more common.

35 months ago

Kate

I tell everyone because the people I know are like old school Italian and Irish and Jewish and Russian... and is there any type of heritage that doesn't involve filling people up with food?  AND is there any type of heritage which doesn't force food on people and think you're rude if you decline?

Plus after being gluten free, I have now lost so much weight visibly (not pounds but all of the swelling went away - I was like an inflated balloon).  So everyone feels that they are obligated to feed me.

Since I don't want to be rude and offend by refusing food, I tend to explain the disease so people understand that I want to eat their food but I'm not able to.

35 months ago

Kate

Oh and in reply to Allison - I know the feeling when someone goes out of their way to show they understand the disease

.  Bithday's were HUGE in my office and mine got skipped over for 2 years because I couldn't have cake.  They put balloons and cards but that was it.  No team celebration because they thought I'd feel bad if they ate cake in front of me.

I almost cried last year when my colleagues and Boss found a bakery which makes GF Cheesecake.  They were so excited to be able to light the candles and sing and have me eat cake for my  birthday.  Also for the Christmas Party my friend made GF Brownies.

The more educated people become - not just the layman but the medical community - I think life will continue to improve for us.

35 months ago