Daily Challenges of Celiac Disease

By Naturally Savvy

Actress Jennifer Esposito joined Andrea Donsky and Lisa Davis on Naturally Savvy Radio to discuss the daily challenges of living with celiac disease. [The following transcript has been edited for print.]

Listen to the full radio interview here.

Naturally Savvy: Living with an invisible illness can be so complicated, so I am so glad to have the wonderful Jennifer Esposito back on the program. She has celiac disease. It took her years to get diagnosed and she still is running into obstacles left and right. She is going to join us today to talk about some of these issues, what you can do, and how she has handling it. Hi Jennifer.

Jennifer Esposito: Hi how are you?

NS: Good, how are you doing?

JE: I am good, I am good. You know, just trying to deal with all this fun stuff that comes along with having something that is invisible to the rest of the world! It’s not an easy task.

NS: It definitely isn’t. I’d love to hear about what you are going through right now. I know that you are planning a big event, and what should be a joyous time can be complicated because of people’s ignorance. Talk to us about that.

JE: I am planning my wedding and I really enjoy doing all the ground work - the decorating, the food. I would love to cook the whole thing myself but I know I can’t possibly do that so I started looking into caterers. I saw a few that advertised gluten-free. But when you speak to them and really get down to it, either they truly have no idea what you are talking about or they say things like, “Oh, you are really sensitive? No.. I can’t do that.”

It came to a point where I asked, "You are advertising that you can, but you are telling me because I am really sensitive, you really can’t? Personally I think you should take that out of your advertising because that really isn’t gluten-free then." If it’s "kind of gluten-free" it’s not gluten-free. For a celiac who needs 100% gluten-free, what are you doing about the fact that your kitchen is cross-contaminated? Do you use separate bowls? Do you use separate cutting boards? Do you have designated area? All of the answers across the board were "no."

Read more about places gluten may be hiding in your gluten-free diet

This is just not OK. I went down the road of asking friends and family what to do, I have to tell you, 3 out of 4 people were like, "Just cater the wedding and bring something for yourself." Isn’t that horrible?! At my own wedding I am supposed to brown bag it?! That’s really not OK - especially if people are advertising that they are gluten-free. It’s just gotten to the point where there is such a lack of education about what celiac disease really is, what the whole gluten situation is. The people that are suffering are the people that really need this food to be clean. I even offered up my gluten-free facility that we do all of our baking in. We have a beautiful test kitchen they can cook at - and for that they were going to charge me two thousand dollars extra.

NS: What? That’s crazy!

JE: Two thousand dollars extra to cook there,  a transportation fee - when it’s about maybe 10 miles away - AND a cake-cutting fee of 175 dollars. I just thought, "Wow... wow. That’s wonderful. You see a place where you can take advantage and you are doing so?" I think it’s disgusting. So, I will serve everybody dessert. I will serve everything from my bakery and we will have cake!

NS: You would think that in New York, LA there would be so many gluten-free options. I am guessing they are worried about legal issues and that’s why they are saying that they can't serve you because you are particularly sensitive. Do they not want to go down that road because they are afraid of some type of legal action?

JE: If that's the situation, that’s absolutely fine. Everybody has to be able to say what they want and when they cannot do with their business, but you have to take gluten-free out of your advertisement if you can't guarantee it. It needs to come out of the advertising. So what are we left to do? My brain now is thinking, "I have to open up a completely allergy-friendly catering service. That’s where my mind goes..!

I have a real problem with someone being taken advantage, of people not caring about the person next to you. I tell the caterers I have this disease, and they say that they can do it.. but not for me because I am too sensitive. I offer a solution, a place to cook it safely, and I am going to be charged through the roof for it. I didn’t ask for this disease. It’s a lot to take. I'm in New York and I wonder about people in small towns. What do they do?

NS: I am thinking that these people who are advertising gluten-free are just trying to go with a fad. The gluten-free fad has actually caused a lot of issues for people who have celiac. Talk to us a little bit about that.

JE: The person I am speaking about is a very high-up, well-respected caterer who doesn’t need to advertise that. She has her own business that is doing quite well. It doesn’t need to use that as a tool. There is a huge problem with the whole 'gluten-free fad' nonsense, and now so many articles are coming out saying there is no such thing as gluten intolerance. I feel for that community.

Read more about food sensitivities and intolerances

NS: What? Who’s writing that?

JE: I have seen so many people email it to me. The articles say there is no such thing. Celiac disease is correct, but the rest of it’s in a person's head. I feel so bad for that community, because at least I have a diagnosis behind me. A lot of people don’t have a test that says "You have celiac; you are dying because of gluten." They are just left in the wind. I always tell the people that write me that you have to realize wheat is a money-making machine that is losing money day, after day, after day, as we move towards a gluten-free industry. They are going to try to get you back, they are going to. I always say, if you feel better being gluten-free, for whatever reason, then go for it. But I have to ask you to be completely aware and sensitive to the people that need it, and that is people with celiac disease. There is no choice for us.

NS: I [Andrea] am completely gluten sensitive. I have what is called non-celiac gluten sensitivity - exactly what you are talking about. I can't eat gluten, and if I do, it affects me in such negative ways. I can’t sleep at night, I get pains in my stomach. I have been tested so I know I don’t have celiac disease, but like you are saying it’s very important for people who have these sensitivities to be taken seriously. You are right - you have that diagnosis, but for people like me when people say that it doesn’t exist or it’s in our heads, it’s absolutely ridiculous.

JE: It’s ridiculous. It’s that 'invisible disease' issue - where just because you can’t see what happens to me, just because you can't put your finger on it, you have to say it doesn’t exist. There are money issues behind this. The food industry is complicated. But people just want to eat clean food at this point.

Listen to the full radio interview here.

If you would like to learn more about Jennifer Esposito, visit jennifersway.org or jenniferswaybakery.com, and follow her on Twitter @jenniferswayje.

Image: Alpha

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By Naturally Savvy| April 04, 2015
Categories:  Care

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