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14 November 2006

CNN and celiac


CNN and celiac, originally uploaded by shaunaforce.

"The only thing that can save the world is the reclaiming of the awareness of the world." —— Allen Ginsberg

One out of one hundred people in the United States has celiac disease. 97% of us don't know it.

I feel lucky to be aware of what drives my body. I spent a lifetime feeling lousy, and never knowing why. Finally finding awareness of the food that makes me sick — and the food that makes my body soar with joy — has opened me to everything else that followed. The Chef? The book deal? The other possibilities that are arising that I cannot share yet but will? I firmly believe that has arrived because I finally had awareness of my own life.

I keep this website because I want to spread awareness of celiac disease. I want everyone to be diagnosed. I want to spare as many people as I can of the suffering I endured.

Of course, I am not the only one on this mission. I am thrilled to see the awareness of celiac disease and the need to eat gluten-free growing in this country. Every time a major news outlet or magazine mentions it, I do a little dance.

Yesterday, CNN anchor Heidi Collins admitted that she and her son have celiac disease. As part of her mission, she interviewed Dr. Peter Green from Columbia (one of my favorite people) about celiac, thus introducing the words to millions of people across America.

Way to go, Heidi! And thank you, Dr. Green!

If you are interested in seeing the interview, click here. Yesterday morning, I watched it online, thanks to the good people at the National Foundation for Celiac Awareness. (A big yay to them, as well.) Later, when the Chef woke up, he wanted to watch it too. As he listened to the explanations, he put his arm around my shoulder and held me. When he saw the incredible image of a refugee child in Africa, malnourished because the aid organizations were unwittingly giving her wheat when she had celiac disease, he squeezed my shoulder closely. When he saw the photograph of the girl six months later, after she had stopped eating gluten, he marveled at the change in her. I couldn't help but cry. Certainly, I never looked like that girl. But the photographs brought it home to me once more: I suffered all my life with this, without awareness.

I am so grateful now, for that awareness, and for the Chef's hand cupped around my shoulder, understanding and supportive.

Heidi Collins also did a follow-up piece on celiac today, which you can view here. I'm thrilled that she is trying to humanize this story. It seems she intends to keep doing pieces on it until everyone is diagnosed.

So do I.

17 Comments:

At 5:25 PM, Anonymous Anonymous said...

Hi Shauna, I've been reading and thoroughly enjoying your journal for a few months now. I found you through your spot on the Food Network. I do not have celiac disease, that I'm aware of, though your statistics posted tonight (1 in 100?) really gave me pause to think about my energy level, my general... uh... gasiness, etc. Heh.

The thing that brought me out of lurkdom to comment tonight, though, is a choice of words you made, "CNN anchor Heidi Collins admitted that she and her son have celiac disease."

I'm really curious about this wording... To me, the word "admit" is so often associated with "owning up to", like one would a mistake, or something else one would like to keep hidden or is ashamed of.

Just from reading your blog, I can't imagine that you see having celiac disease as something to be ashamed of, so I wonder if there is some kind of societal stigma around gluten intolerance?

I've been thinking a lot lately, on both a personal level and political level, about shame associated with food and eating, so this just piqued my interest... I'm curious if this was an intentional choice of words, or just... random. I've been known to think about things too much, after all!

Kim
Chicago, IL

 
At 5:37 PM, Blogger Shauna said...

Kim,

That's a great question. Oh no, I'm not ashamed of having celiac disease, or else I would not be keeping this website!

But the word choice was intentional. If you watch the video, you will see that Heidi Collins does "admit" to having celiac. In fact, the whole piece feels a little like a confession, or a coming out. That only makes it more powerful, I believe.

There are numbers of people who feel "weird" for having food intolerances or allergies or something like celiac disease. I think that has been the common conception of this culture — food allergies? how weird. The more awareness we spread, the less embarrassment there will be.

I think shame is too strong a feeling for this. There is no shame. In fact, for me, once I found out that going gluten-free made me healthy, I lost any food or body issues I ever had. It's fascinating.

Thanks for your comment.

 
At 6:56 PM, Anonymous zohreh said...

I wish that I could be as strong and 'shame-free' as you, Shauna, regarding food. I was diagnosed as celiac last year, and that, with my allergies to milk, garlic, and some wierd chemical in processed sugar, makes me feel constantly ashamed. I feel terrible when I get invitations to dinner or when I eat out a restaurant. I have to ask so many questions and people look at me like I must be a crazy hypochondriac or the pickiest eater ever.

It's even worse when my mother in law or some other well-meaning person makes me something that I know will make me sick, but I eat anyway because they tried so hard to make something they thought was gluten/milk/or sugar free. I am a pain to feed, so most if the time I'd rather cook for myself at home than feel like a burden to whoever is cooking. My own mother (also a celieac) is always making comments like, "You can't expect me to keep up with all of your allergies. Make your own dinner if you don't like what I've made for you."

If that's not shame inducing, what is? I'd love to know how you avoid feeling like a large inconvenience. How do you get the point through to people that eating things you're allergic is bad, and allergies have nothing to do with being a picky eater???

 
At 10:13 PM, Blogger Sarafina said...

I was so excited when I saw this post. I emailed the story link to a huge list of folks (family & friends)... I cc:ed you on the message. I hope you don't mind... :o) xoS

 
At 6:24 AM, Blogger Loner said...

It never ceases to amaze me, the profound effect that food has on our wellbeing. I work primarily in diabetes, but see so many people with a myraid of illnesses that all involve inflammation - as does diabetes to some degree.I think ten years from now, we'll see gluten and processed foods as the culprit in more than just celiac. Adjusting the diet makes such a huge difference. Thank you for keeping such an easily navigated site - I made your peanut butter cookies, adding bits of dark chocolate, last weekend - my family gobbled them up!

 
At 6:50 AM, Anonymous Shaune said...

It's so true that stories in the media can make a huge difference. I was diagnosed because my husband kept coming off flights waving stories about sensitivity to wheat that he had ripped out of magazines and newspapers in various places, and saying he thought that was my problem. But to get the diagnosis I had to insist on it with a reluctant gastroenterologist who said he was sure I didn't have celiac, that it was just IBS. This was only 3 years ago, but I think things have begun to change since then. Canadian news did a celiac story a few weeks ago and the family they featured had tested a child who was sickly, and then when they tested the Mom and the other child as well, it turned out they all have celiac!

 
At 8:22 AM, Anonymous Anonymous said...

When you have Celiac disease it can be difficult to make your needs known, especially when dining as a guest at somebody else's house.

A friend helped "diagnose" me, because she had once had a roommate with Celiac disease and knew my symptoms were "classic". Three weeks after she "diagnosed" me, she invited me over for a gluten-free dinner, and then mistakenly served food with flour in it. I don't know who felt worse- her or I. I felt like I won a battle with my own family, when my mother called me last night to go through the t-giving menu to see what it was I could and couldn't eat, and then asked if there was anything special she could make for me. My family is definitely one of a food = love culture, and don't look fondly upon food allergies.

On the awareness issue - it is incredibly important and I think it will take on its own momentum. A friend helped diagnose me, I have made *many* more people aware of it since I've been diagnosed.

 
At 8:44 AM, Blogger astillac said...

*hugs zohreh*

Aw, honey, I pulled that with my family when I first started that. I cheated myself. Then, one weekend, we were camping. And they saw how sick I was. Saw how much time I spent in the bathroom. Noted the change in my temper. (I had come from my nice safe gluten-free house to hang with them.) How could they not? When they were up front with it, faced with it like that, there was this massive change. Suddenly, everything was different; salad dressings, commonly dismissed as "regular or fat free", became "is this okay for you?" I started asking my grandma what was in everything she cooked. That was ballsy of me, I thought, but you know what happened? She started sharing her secret recipes with me, and is working with me to make them gluten-free. For this Thanksgiving (danger time) my aunt called me a few days ago to tell me her awesome dessert idea - sugar free pumpkin mousse. No sugar for my mom, no gluten for me, no fat for her.

So here's my advice. Bring it up. Bring it up again. Do not bend. Do not waver. This is making you sick. It's doing permanent damage. If you had diabetes, would you eat refined sugar? Would they feed it to you? Yes, this is just as serious. Yes, this is important. No, you will not grow out of this. No, it will not simply go away if you are careful for a little while.

This is permanent; this is something you've been gifted with. There are so many food possibilities open to you; embrace them.

 
At 12:21 PM, Anonymous Anonymous said...

I have been lurking here for about a month...maybe longer. I thought I would "come out" now to THANK YOU.

I am a foodee, love to cook, love to eat good food, and I am Italian-American. I have had physical troubles for 4 years, and just horrible life-altering ones for the past 2 1/2 years.

As a Mom of 2 children (ages 3 and 5), I never had time to give into the overwhelming exhaustion, joint pains,and constant constipation among other symptoms.

I rarely took drugs for my symptoms, only because I wanted to find the answer for my illness, for me, but mostly for my children. So they could know, in case it was something that would affect them.

I have tried a gluten-free diet, and that seems to be the answer, I ate gluten for the blood test, trying to activate a response from my body (which I think I will NEVER repeat, even for a firm diagnosis...not worth it)and the symptoms came raging back. I resumed the gluten free diet and now, I think I have my answer as my symptoms slowly start slipping away, gradually every day.

The thank you part comes in for you taking the time to do this blog, share recipes and ideas, and feelings. This takes time, energy and effort. Thank you so much for sharing.

It will save me time, time that I don't have (as a busy Mom) to relearn how to cook and modify my favorite recipes to be gluten free.

Thank you.

By the way, any ideas on a gluten-free cannoli shell???? :)

SM

 
At 3:27 PM, Blogger Lynryn said...

Being super-sick today for some unknown reason, I was really happy to see some more Celiac publicity. The more people who have it, and are aware of it, the more pressure food companies have to better label their products.

Then she said "I can't lick envelopes". I forgot all about that when I went to the bank today. Gluten -is- in everything, and I guess I know why I'm sick now!

 
At 5:01 PM, Anonymous Lisa B-K said...

I didn't watch the interview, but...

Last night I was at an OxFam banquet, and as I watched the slides showing malnourished kids eating gruel all over the world - food given to them by well-meaning relief organizations - I wondered to myself how many of them were celiac.

 
At 9:07 PM, Blogger Shauna said...

Zohreh,

Your comment just breaks my heart. In fact, I have been thinking about it for the last twenty-four hours. I have to echo Astillac here, who beat me to it: advocate for yourself. It's easy to be shy and not want to be pushy. But you know what? It's much better to be perceived as "pushy" than to be sick all the time.
Your mother's comment is what haunts me. What? There are obviously other issues at play here beside the celiac. You know what I would do? I would direct her to this post, and have her read your comment, and all of these as well. Sometimes, seeing yourself in print makes it more real. She just has to stop that.
But you have to stop too. Don't allow timidity or a wish to not be picky to make you sick. In fact, I'm writing an entire chapter on this in my book. I'll be addressing it more as these days go on.
Write to me if you want to talk more. All the best.

Sarafina,

I certainly don't mind! I'm happy that the post helped -- isn't it fabulous to have someone in the mainstream media take notice? I'm glad you're feeling better, as well.

Loner,

I completely agree. I think that in twenty years, when more and more people have been diagnosed, we will start to see how many conditions were actually by-products of celiac. That's why I'm doing this -- awareness.
(Dark chocolate in the peanut butter cookies sounds fantastic.)

Shaune,

So good to see you here. Yes, we never know, do we? If NPR hadn't run s story on celiac, I never would have been diagnosed, or not for a long time. The more we speak out, the better. And that's why we can't see ourselves as picky eaters!

Astillac,

You rock. You said exactly what I wanted to say, and kindly. Good on you! You have the right attitude.

SM,

I am so happy that you are discovering the answer. It's amazing what a difference it makes, isn't it? And it's a good lesson for us all, to not put ourselves on hold, to not ignore our bodies in the service of working for others. Moms deserve to feel good too.

Lynryn,

I know! Those damned envelopes. I should do a post on that. It's insidious where it hides. Feel better.

Lisa B-K,

Yes, isn't that an amazing fact? We want to help, but we are imposing the western way, and then....Thank you for bringing that up.

 
At 5:37 PM, Anonymous Anonymous said...

I like what Heidi had to say on the CNN spot.

The only thing I did not know how to take is how she quickly listed Wheat, Barley, OATS, and Rye as being bad / off-limits. This Oats thing is really confusing to anyone with CD or new to being GF, especially when there is so much conflicting information about it. At the Columbus Ohio Celiac Conference a couple weeks ago, they presented information stating that the current view on Oats is that they are SAFE so long as they are not contaminated from other gluten-containing sources. Of course, most Oats will likely have some cross-contamination unless certified GF. This all just makes explaining what is/isn't "safe" for us CD people even more confusing.

Always glad to see any news shows address the topic though -- we need greater awareness and this type of report will certainly help.

 
At 3:03 AM, Anonymous Aaron C. said...

Hello,

I stumbled on your website after a freind told me about the CNN story...

Over the past year, I have been having intermitten "localized abdominal pain" that has yet to be diagnosed to any satisfaction. When I heard about this story, and then did some research... I thought to myself, omg, this is me. I am getting tested next week to see if have Celiac disease... and I am terrified. I love bread (especially garlic bread), I enjoy many foods that would be out of my life all together if I do have this... I have started reading yoru site... but I guess I am just terrified at the prospect of having this and not sure what to do...

Maybe I am just babbling... I have had an entire weekend of horrible pain... and I just have to wait until I get tested.

Sorry for ranbling... I really enjoy your site... and keep up the good work!

 
At 9:20 AM, Anonymous rachel said...

thank you for sharing this! I just wished they had talked about the false negative rate of the blood test.

 
At 10:22 AM, Anonymous Katie said...

This post (and your whole blog) is uplifting for me. I've been dealing with IBS (or what I thought was IBS) until I saw an allergist who thought my positive skin test reaction to wheat might actually be what's causing my GI problems. After an avoidance diet, that isn't the cause but now celiac is suspected. I'm going to be tested and follow a month-long avoidance diet of gluten, which I'm not looking forward to especially after the two weeks of no wheat.

On top of all of this I have a severe allergy to tree nuts and Oral Allergy Syndrome to many raw fruits and some raw veggies. I also can't digest dairy products well (but am not lactose intolerant). I feel like a hypochondriac when I have to ask about food before I eat it or I'm searching through labels at the store. I'm terrified to find out if I need to add gluten to that list but if it makes me feel better, it's worth it.

Food allergies and intolerances aren't understood but thanks to people like you, perhaps someday they will.

 
At 1:26 PM, Anonymous Anonymous said...

Your post hit really close to home. I have always been the same way about everything in my life.... always wanted to be polite... be liked.... not wanting to offend. Then my son was diagnosed with Celiac Disease, and I overcame the biggest hurdle of my life, because it wasn't about me. I have realized that my son's health is the paramount issue and if other people choose to be offended, then that is just something I am willing to live with, because I love my son too much to hurt him physically over someone else's imagined offense. Someday, he will be an adult, and I would be devastated if he risked his precious health out of embarrassment. On a very positive note, I have learned something. If you are confident and defend your needs, people have confidence in you. Believe it or not, people learn to respect your requests if you respect your knowledge enough to be assertive about it. If you are wishy, washy they don't believe you really know what is best for you. Have confidence in your knowledge. No one else has studied enough to know what is best for you. Share your knowledge and assert it. As I learned from one of the three times I ever watched Dr Phil, "you teach people how to treat you and it is never to late to reteach". Good Luck!
tawnya

 

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