New York Times best-selling author, slow cooking expert, mom of three
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A Year of Slow Cooking

Tuesday, May 3, 2011

May is Celiac Awareness Month--and a call to action

UPDATED (5/5/11): The cake was built, and the FDA attended and released a statement. Please click here for the article, and for cake pictures. 
THANK YOU. so very very much.


Good morning! (or afternoon!)

I had the extreme pleasure of speaking and cooking this past weekend at the Gluten Free/Allergen Free Expo in Chicago. I made Carnitas and Country Captain Chicken (sans shrimp) for a group of wonderful people--many of whom are newly diagnosed with Celiac Disease.

Celiac Disease is an intolerance to gluten, which is found in wheat, barley, and rye.

We are a gluten free family. Many (maybe even most?) of my online and cookbook readers are NOT gluten free. In fact, I get an email pretty much daily from people who are unaware that my recipes are gluten free until they find out that either they (or a family member) needs to steer clear of gluten and they realize what my little notes mean.

My six year old has Celiac. I don't write about it very often, because it's kind of a heavy subject, and I try to keep things light and upbeat here. But this is something that is a BIG PART of my life, and the lives of my family members.

My middle child was diagnosed with Celiac when she was 22 months old. She began vomiting sporadically, and continued to do so for about six months. We had recently moved back to the SF Bay Area, and I needed to go back to work. I was lucky enough to find a job teaching preschool where the kids (we had two at the time) could be with me.

But my little one didn't handle it well. She began getting sick, which I brushed off as her getting used to a childcare setting, and the germs (on a good day, I cut myself slack about this. on a bad day, I crumple in a heap and blame myself for her being sick. repeatedly.).

Fast forward to today, and she is perfect. The second our family went gluten free, she stopped vomiting. In fact, her immune system is now so strong that when a cold or flu goes through our home, she doesn't get it. She's strong, healthy, and a fantastic gymnast and student.

I don't want her diet to define who she is. I want that to just be a tiny piece of who she is. That's why I try my hardest to make sure that she has the same (if not better) food on hand  for all of life's occasions. School parties. Girl Scout events. The soccer team pizza party. Birthdays. Sleep overs. 

So why am I telling you all this? 

Because I'd like your help.

There is a grassroots effort to get the FDA to regulate the labeling laws for gluten free products.

As of right now, there are no laws in place stating how many parts per million of gluten molecules can be present in food that has been labeled "gluten free."
There are no laws in place on how the food is handled, or a mandate to have a dedicated gluten free facility when packaging gluten free food.
There are no laws instructing restaurants how to properly prepare and serve food in restaurants that serve and advertise gluten free food.

We'd (I'd) like that changed.

I have friends that can't eat packaged gluten free food. They get sick. 
They get sick because the tiny bit of minute gluten left lurking in the food due to the manufacturing process is enough to set off a reaction.

That is not okay.

I have friends who have been hospitalized after eating at restaurants that ADVERTISE gluten free food.

That is not okay.

Gluten Free food should not be a fad. This is not a marketing ploy, or a way to "get in" on the next big food thing. This isn't the new vegan, or the new low-carb. Manufacturers should not be able to cash in on the "next big thing" in food without realizing that this is a life-or-death decision for MOST who have to strictly adhere to a gluten free diet.

Everyone should have safe food to eat.

If you can, I would greatly appreciate you taking the time to sign the online petition that will be presented to the FDA asking for proper regulation.
You do not need to give your home address, phone number, or other personal information. All that is asked is for your name and email address.

Please help spread the word. 

Click here to sign the petition. The website is 1in133.org and tomorrow, May 4, there are a bunch of people assembling in Washington DC to prepare the world's largest gluten free cake in an effort to help draw awareness to the campaign.

I'm not going to be in DC. My girls need me home, but I will certainly do my part to help however I can. You can help, too.

thank you for sticking around, and for your support, kindness, and understanding. I'll be back in a bit with your regularly scheduled crockpot recipe.
xoox steph
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37 comments:

Stephanie O'Dea said...

eeps! I screwed up and accidentally deleted comments on this thread---and now blogger won't let me repost them.
grr.

Stephanie O'Dea said...

these are the comments I accidentally deleted:

hunterslyonesse: Well said, Stephanie. I know how passionate you are about this subject and what a big heart you have for those of us with food issues. You are right - it is NOT okay. And just so you know, the hotel more than made up for the blunder in the kitchen Saturday. ;)

Jenn: Honestly, I had no idea for a long time your recipes were gluten free. It just so happened I was already using them when we found out we had to make the switch for my son. It was quite convenient, actually. I appreciate your passion and your whole family taking the stance of solidarity with your daughter.

Celia: Thank you, thank you! I was diagnosed with non-celiac gluten intolerance, and I too get sick with some packaged foods. Trying to pick which foods are "safe" is hard enough without guessing on ingredients or cross-contamination issues. I have to admit, I used to follow your blog before I went gluten-free.. and was pleasantly surprised when I found out you'd also gone gluten-free. Have a lovely day, and give your little one a hug. :)

Jaime: Steph, I couldn't have said it better myself! I hope you don't mind, but I'm adding this to my blog. I think how far we have come in the 4 years we've been gluten free, but we still have sooo far to go.

TudorRose: I love your blog and recipes, but I have to take issue with the fact that you refer to a vegan diet as a "fad." True, being vegetarian or vegan is a choice, but for the many vegans I know (and I myself am a vegetarian), it is not fair to act as though our dietary habits is some phase we're going through.

You don't make the decision to give up meat on a whim, and it IS a matter of life-and-death: the life and death of animals.

Stephanie O'Dea: Tudor Rose, thank you for your comment, and I apologize for coming across as insensitive. It was not my intention, but I appreciate you letting me know my misstep.

Anonymous said...

Signed for myself and my family....
Also forwarded it on to my niece who also suffers.

thanks steph for sharing hope it works.

Dottie

Wendy said...

Thank you for spreading awareness for this most important cause!

My daughter and I both have celiac and we're anxious for the day that the FDA gets it's act in gear and does the right thing regarding labeling laws!

PS -- I also REALLY want some of that cake :)

Katie @nycitified said...

I think it is awesome that you guys are trying to get standard labeling and so I've signed the petition! We are not gluten free, but we do have a variety of other food allergies in our family so I think that proper labeling should be a basic consumer right. Good luck with your campaign!

Rynell said...

My son and I are gluten-free. I have really enjoyed your recipes and especially your cookbook. Thank you for passing along this information!

K-Koira said...

I just went to a dog sporting event this past weekend and found out once there that two people on the team I was running with were gluten free. I wished I had been told before hand, since I brought food for the potluck. I grew up in a gluten free household, so have no problem doing gluten free dishes if people need it.

We did discover that the new Kettle chips corn chip dorito like things are gluten free (according to the list of ingredients at least, though the packaging does not state gluten free), which they appreciated since I guess Doritos have gluten in them.

Rachel Elizabeth. said...

Thanks for sharing about the petition! I want to SCREAM when a package says gluten free on the front and says "may contain wheat" on the back. And then, when my bottle of juice says "gluten free", I want to scream even louder. The manufacturers are definitely trying to cash in and we're the ones losing out! Ugh.

By the way, I've read your blog off an on for a couple of years now, and only recently did I realize that you were GF. I avoided many pasta recipes because I didn't know if my GF pasta would hold up. Then I came across a picture with all your ingredients for a particular recipe and I use the same brand you do! I felt kind of dumb afterward. =)

Dana said...

Thank you from another Celiac. :) And petition signed....

BlueCodeRed said...

Thanks so much for sharing! My best friend is allergic to gluten and casein and I know she's gotten sick from food labeled "gluten free".

Alison St. Sure said...

Well said Steph!! You have lots of loyal fans, so hopefully they will help us GF people out! Thanks everyone. We all deserve better labeling anyway, gluten-free or not.

Anonymous said...

I personally am not affected but some of my cousin's children have been diagnosed. Labeling for all things is important; it shouldn't be a matter of processors figuring out how little they tell us.

Coach Laura Anna Doyle said...

Thank you so much Stephanie for using your public persona to get out the word on Celiac. As a celiac and mom to a celiac (and sister to a celiac) this is a very important topic for me.

It would make life so much easier for me if I had an easily read, reliable label on most of my food.

Good work!

Gluten Free Eater said...

We recently went gluten free and have solved a number of huge health issues for both my son and I. I have been following your blog since you were on the Rachael Ray show and was so grateful that this was one place I already knew I could go to.

Gina said...

My son lives with high sensitivities to foods like dairy and gluten which makes preparing foods sometimes challenging. When we first started on this journey, the most frustrating thing was not always having hidden ingredients identified. Better labeling would have made a world of a difference.

Thanks for getting this going, Stephanie!

Jennifer said...

It has been less than a week since we learned of my son's gluten intolerance. He is 2.5yo and the second of four children - we also have a 4yo and 1yo twins. I am still in the "overwhelmed with guilt" stage since I passed off a lot of his symptoms in the wake of a very very busy year with newborn twins. And now I almost feel like my head is spinning with trying to get the right diet together.

But one thing that has helped is your blog. I am a long-time reader and never thought I would need the GF recipes myself. Knowing we had good food that I could put together that would be safe as we went through this transition has actually been huge to me. Love your blog and your books - thanks for what you do!

Steph said...

AMAZING!!! my 5 yr. old celiac son has been almost worsening!! I'm really wondering if it's the packaged foods. unbelievable. thanks for your support and encouragement and wonderful blogs! I refuse to stop "living"..it's tough when you've got a kiddo who wants all the "junk" the others get to eat. Petition signed..thank you!!!

Jennifer said...

Your virtual hug is so so appreciated! Thank you again for your cooking resources and also your willingness to share your story and support with people like me - it's amazing how you can feel so much more connected and less alone when you start looking for resources.

Johanna B said...

I am a Celiac and I signed the petition. Thanks for making folks more aware of this problem.

Janet said...

It was great seeing you at the Gluten and Allergy Free Expo. The Carnitas and Country Captain Chicken were excellent, btw. I was recently "bequeathed" a slow cooker, albeit an old one. It has three settings: High, Low and Off. However, it appears to work. Now that I have one, I'm looking forward to trying out some of your recipes.

I signed the 1in133 petition a few weeks ago and have been annoying my Facebook friends with links to articles about the initiative as well as writing to my reps in Washington and the folks at the FDA.

Maggie said...

Beautiful post Stephanie. Thanks for sharing some of your story. I am so happy that your 6YO is healthy and happy. Likely do to all that you've done to get her there - she's got a lovely woman for a mommy! xo

Jennifer Guirguis said...

Thank you for sharing this, Stephanie. My children have multiple food allergies, and I know all too well about the labeling frustration you speak of. Hopefully there will be changes in the near future.

Also, I discovered your blog earlier this year and have had wonderful time using my slow cooker ever since. Thank you for blogging about this and making this woman's life a little easier!

quinn said...

Sure, I'll sign!

Tasha said...

I have told many people about your blog who have Celiac disease or who are gluten intolerant. I am so grateful to have more options out there and that look like "real" food.

Stacey said...

Thanks for sharing your story. We recently had to go gluten free in our home as well and my husband is as you described your friend. Any cross contamination at all leaves him in great pain. Eating out is a fear that we mostly just avoid because it isn't worth the risk.

Joe and Marci said...

My daughter got very sick after eating from a "gluten-free" menu in a restaurant. I'm totally on board with this, I hope something gets accomplished. Shame on those that think this is a new fad diet. Thanks for getting the word out!!

Dana KBS said...

Thanks for the heads up, Stephanie. Our family has a similar story--our daughter was 18 months and had just started day care, and the answer we gave ourselves (and heard from no small number of medical care professionals) was that she was just picking up "what's going around". Meanwhile, she was sick as a dog, with consistent and horrible diarrhea, and it took a fever of 104 on Christmas eve before a doctor said, "Try taking her off gluten and see if that helps." It did, and four years later we stay gluten free with the help of sites like yours. You make a big difference and I read your blog religiously (even if I rarely comment). Thanks and I will repost the petition link on FB and my own blog!

Heather said...

i was one of those participants at the GF Expo who got to enjoy your presentation! Thanks so much for coming. It was such a great weekend.

Thanks also for spreading the word about 1 in 133!

Laura said...

I signed the petition and sent the emails.

Anonymous said...

I have to be very careful about certain foods. There is not enough information on labels or when eating out. Thank you for all the information on your wonderful blog. Paulette

faire said...

I just stumbled across your blog and having just bought slow cooker into a gluten free home, I'm thrilled to have found it! I am a bit shocked about the labelling laws though, in Australia my coeliac partner can be 100% confident that gluten free is just that. Good to know given that I'm trying to talk her into a trip to the US, perhaps we'll wait a while longer!

Anonymous said...

This is an amazing post. Thank you so much for your advocacy and how clearly you articulate what has been a constant problem in the growing "gluten free" market since we found out 2 years ago that our daughter (now 10) has celiac. We are very excited that gluten free is becoming so well known, but with that is the need for regulation, policy and a very clear understanding of what that means for all people who must should or must avoid gluten. Thank you! Can't wait to try your recipes!

Anonymous said...

Thank you for all of this information! I loved this blog even before my two year old son was diagnosed with Celiac and even more so now!

Sara Bell said...

We signed and were so happy to have gotten to see this. Thanks Stephanie for all you do in the GF community! =]

Sojourner Design said...

Petition signed!
I tested negative for both tests for celiac but feel better if I limit the gluten.

stacyreno said...

I had no idea all of your recipes were gluten free! My oldest is allergic to gluten & I always worry that I am going to accidentally feed her something that will make her sick. You better believe I am signing that petition!

Karen TW said...

good luck stephanie!
my daughter was diagnosed at 2 also but we are lucky to live in australia where labelling laws are much stricter - makes life much easier.

eating out is still a pain though...

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