Gluten-Filled Dreams and Nightmares

The other night, I woke up startled. It was after a night full of (dream) eating gluten. 

In my dream, I was walking down the street eating a regular baguette. I was chewing it, sucking on the bread, spitting it out, and then rinsing my mouth. The person I was with (can't remember who was walking next to me) kept asking me if I was supposed to be eating that bread. I said no and I knew it was full of gluten but that I couldn't stop eating it. In my dream, the bread tasted SO. DAMN. GOOD. It was warm, it was chewy, it was bready, and it was full of gluten. I knew it was bad for me yet I couldn't stop eating. I knew rinsing my mouth out would do nothing and that I would probably be sick in minutes, but I couldn't stop eating. I could almost smell the bread when I woke up, it was that good. Lucky for me, it was just a dream and I didn't get sick. Unlucky for me, it was just a dream and I didn't eat a real baguette.

I've read about these gluten dreams in the past, but I never experienced one myself. I think that comes from going gluten-free at the age of 2 1/2 years old. I really don't remember life before going gluten-free. My celiac family members were diagnosed as adults as were many of my celiac friends. They know life with gluten, I do not. This dream caught me off guard and made me wonder how often people with celiac disease dream about eating gluten so I took my question to Twitter. The response was OVERWHELMING to say the least.

You all dream about eating gluten A LOT! 

@haileyandaspoon 

@jamadoria

@cmarysmith

@suzyqgale

MrsBrightside02

@Melinda_JH

@NoGlutenReqd

@hardcoresalad

@rubykat99

@gfreemaui

@MidwestCeliac

@suzyqgale

@IrishHeartGF

@gfreeonthego

It is so crazy to me how our celiac brains work. We know gluten is bad for us, yet we dream about eating it. Some people enjoy the moment while others panic about eating gluten and wake up sweating.  Have you ever had a dream about eating gluten? If so, what happened? Leave a comment below! 

Cheerios Recall and 10 Reasons I Am Mad at General Mills

Yesterday General Mills recalled 1.8 million boxes of Cheerios due to undeclared wheat. According to General Mills, "In an isolated incident involving purely human error, wheat flour was inadvertently introduced into our gluten-free oat flour system at Lodi." You can read the entire Class I product recall press release here. 

According to the FDA website, a Class I recall is "Dangerous or defective products that predictably could cause serious health problems or death. Examples include: food found to contain botulinum toxin, food with undeclared allergens, a label mix-up on a lifesaving drug, or a defective artificial heart valve."

I am livid by this whole situation. First and foremost, General Mills put wheat flour into a product that was supposed to be gluten-free. Period. WHEAT IS NOT GLUTEN-FREE. This is gluten and celiac disease 101. How did "human error" allow for enough wheat flour to be introduced into the production process to affect 1.8 million boxes of Cheerios? Did not one single person notice trucks with wheat entering the facility??

I have SO much to say about this topic and honestly am so angry by the whole thing. If you follow me on Twitter, you will see I have not kept quite about this nor will I. This is very serious. If 1% of the population has celiac disease and 1.8  million boxes have been recalled, this means that 18,000 people with celiac disease could have been affected by this recall. Add on top of that people with wheat allergies, non-celiac sensitivities, and anaphylaxis reactions to wheat and the numbers of the potentially affected could continue to grow to tens of thousands.


Here are my Top 10 Reasons I Am Livid at General Mills


All screenshots below either come from the General Mills blog, the Cheerios Facebook page, or the press release.  My apologies to Mr. Kevin Hunt who unfortunately is the spokesperson in this mess. Don't shoot the messenger! 

1. General Mills has divided the celiac community. Our celiac disease community is small compared to other health communities, but we have strong voices. When something like this happens, the opinions and nasty comments start flying. Our community becomes an "Us" vs "Them" society. There are those of us who were upset about the gluten-free Cheerios to begin with and those who became "Cheerios Cheerleaders." My first blog post ignited some VERY strong emails and comments. I was practically in tears with some of the emails people were writing me telling me off for talking poorly about their beloved Cheerios. I was reporting facts based on my phone call yet people didn't want to hear the truth. I then saw other celiac bloggers start to publicly bash one another on Twitter and Facebook. These are people that I respect(ed) blatantly hurting other celiacs with nasty words and accusatory statements. During a time where we should be banding together to help each other, General Mills hurt our community more than just with wheat. GM divided us when we need to be united.
   
   
2. Testing for gluten is obviously not being done properly or at all. When I spoke to the GM PR/marketing team on September 15th, they told me that gluten-free Cheerios were tested "multiple times" throughout the production process including at the end of the process. How did 1.8 million boxes leave the GM facility without testing? If the wheat flour was introduced at the beginning of the production cycle, how did these boxes make it all the way to the end without ever being tested? The GM PR team admits the finished 1.8 million boxes were not tested.
3. This is not an isolated incident. This Cheerios recall is a NATIONAL RECALL. The Cheerios in question were produced in Lodi, California but distributed nationwide. There is a lot of misinformation out there in the gluten-free social media world saying this is only a recall for Cheerios sold in California. This is not true. The recalled Cheerios products were shipped across the country!
   
   
4. People have reported having gluten reactions to Cheerios, yet GM denied this claim. During my 9/15 call when I asked about the reports of people having a gluten reaction to Cheerios, the PR team told me that people were either reacting to the increased fiber in their diet or the oats themselves. Yesterday's recall explicitly reported that wheat was present in 1.8 million boxes of Cheerios. Yet, General Mills continues to use oat intolerance or other dietary restrictions as an excuse as to why people are getting sick despite admitting to wheat present in their product.
   
   
5. General Mills had a very slow response time to reports of illness. While I understand that on Sunday, testing confirmed the presence of gluten and the recall was issued within 24 hours. What I don't understand is that people have been reporting a gluten-type response to Cheerios for about a month now and General Mills only addressed those concerns this week. What took so long?
   
   
6. General Mills is embarrassed. Shitting your pants is more embarrassing. During one of my absolute worst glutening episodes about 7 years ago, I was so sick that I was vomiting and having diarrhea at the same time. I was so violently ill that I had to crawl to the bathroom and during that crawl, my body was rejecting the gluten from every single orifice possible. Here I was a grown woman writhing in pain on the floor and not even able to make it to the toilet. I was that sick and it was awful. Now imagine 1.8 million people with celiac disease having a similar reaction or even worse. It is beyond embarrassing, it is downright mortifying. Don't tell me you are embarrassed Mr. Jim Murphy until you have crawled a mile in my glutened shoes.
   
   
7. General Mills violated the trust of the celiac community. Read any of the Cheerios responses on their Facebook page. They know they lost the trust of many thousands of people with celiac disease. They admit this over and over again. I believe they have lost a LOT of customers due to this recall.
   
   
   
   
   
   
   
   
   
   
   
   
   
   
8. How did General Mills clean up after this mistake? I posted this to the Cheerios blog but my question hasn't been answered yet. If GM had enough wheat flour to affect 1.8 million boxes of cereal, how did they clean the facility to ensure this would not happen again? I want to know how Cheerios and General Mills were able to clean away the wheat flour in their facility.
   
   
9. What happened to the gluten-free trucks? During my call on 9/15, I was told that General Mills used dedicated gluten-free rail cars or trucks to transport the oat flour and the product. According to this press release, the rail cars at the Lodi facility were unavailable and flour was being off-loaded into trucks. Would use of the dedicated gluten-free trucks have avoided this recall? We may never know!
   
   
   
   
   
10. Cheerios made people sick. End of story. Celiac Disease is not a joke and autoimmune reactions to gluten can be severe. It is inexcusable that so many people have reported illness due to eating Cheerios. Whether General Mills did a recall or not, they need to take ALL reports of reaction very seriously and not just from the batches of contaminated product made in Lodi.

***

If you got sick from eating Cheerios, YOU MUST contact General Mills and the FDA. Here is how:

Contact General Mills by website, email, phone, fax, or letter. I encourage you calling them directly. Whichever method you use, the box information is critical to your complaint. Do not throw away your box! Keep everything and read them everything they ask for during your complaint. 

General Mills Customer Service: http://consumercontacts.generalmills.com/ConsolidatedContact.aspx?page=http://www.generalmills.com&js=True

Contact the FDA by phone or website. This information comes directly from the Gluten-Free Watchdog website: 

If you believe you became ill after eating Cheerios, FDA is asking that you contact FDA’s MEDWATCH, the Adverse Event Reporting System. You can do this online https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.homeor via phone (800) 332-1088. Choose option #4 to speak to a representative.

What The Heck Is Gluten?

I've been really quiet this month which is kind of ironic considering it is Celiac Awareness Month. More on my silence later. In the meantime, share this post with everyone. It is actually a decent explanation of gluten and the immune response we experience as people living with Celiac Disease.





Video via ASAPScience

Breaking News: TTB Updates Gluten Policy for Beverage Alcohol

I just received this email and think it is very important to share with the gluten-free community regarding how the TTB will allow the term "gluten-free" on alcoholic beverages.  Please share!

We have completed our review of how the U.S. Food and Drug Administration (FDA) final rule on the use of the term "gluten‐free" in the labeling of products under FDA’s labeling jurisdiction impacts TTB’s interim policy on gluten content statements in the labeling and advertising of wines, distilled spirits, and malt beverages that we previously set forth in TTB Ruling 2012‐2.

As a result of our review and consultation with FDA, we are updating our policy on gluten labeling.  Given the important consumer health considerations relating to “gluten-free” claims, TTB believes that it is important to adopt an approach on this issue that is as consistent as possible with the regulations that FDA issued.

Under our updated policy, alcohol beverages that are made from ingredients that do not contain gluten (such as wines fermented from grapes or other fruit and distilled spirits distilled from materials other than gluten-containing grains) may continue to make “gluten-free” claims in the same way allowed in the new FDA regulations for inherently gluten-free products.

Consistent with the new FDA regulations, TTB will continue to consider “gluten-free” label claims for alcohol beverages that are made from gluten-containing grains to be misleading to consumers who are seeking to avoid the consumption of gluten for health reasons.   However, products made from gluten-containing grains may be labeled  with a statement that the product was “Processed,” “Treated,” or “Crafted” to remove gluten, if that claim is made together with a qualifying statement that warns the consumer that the gluten content of the product cannot be determined and that the product may contain gluten.

TTB may revise this policy after FDA issues a final rule or other guidance with respect to fermented and hydrolyzed products.   In the interim, we remind consumers that the FDA has determined there is still no scientifically valid way to evaluate the claims that beers made from gluten-containing grains can be processed in a way that removes gluten and that there is inadequate evidence about whether such methods are effective.

Our Revised Interim Policy on Gluten Content Statements in the Labeling and Advertising of Wine, Distilled Spirits, and Malt Beverages (TTB Ruling 2014-2) can be found on our Website at:  http://www.ttb.gov/rulings/2014-2.pdf.

Please contact me with any questions.

Tom

Director, Congressional and Public Affairs
Alcohol and Tobacco Tax and Trade Bureau
Office:  202-453-2180

Define Glutard

I found this on Urban Dictionary (a fave!) today after debating the meaning of the word over gluten-free beers last night. I thought it was quite amusing. Sorry for those of you who are easily offended.

Glutard: One who does not possess the enzymes necessary to digest gluten, a main ingredient in wheat products. One who is "glutarded" must only eat gluten-free foods, such as water, tofu, and air.

"Hey, do you want some pasta for dinner?"
"No, sorry, I'm a glutard."
"...what does that mean?"
"It means... I'm glutarded."
"Oh. Okay."

Westchester Celiac Sprue Support Group Meeting

The next Westchester Celiac Sprue Support Group Meeting (WCSSG) is this coming Sunday, March 29, 2009.

Phelps Memorial Hospital - Auditorium
Sleepy Hollow, NY

Join the WCSSG on March 29th when a special panel of WCSSG members will share their knowledge and experience with gluten-free learning and living.

Hear how one very special family lives and copes with celiac disease. There are many wonderful families dealing with CD in Westchester, none perhaps more so than the Leslie family who are known to many people through the Colin Leslie Walk for Celiac Disease. The Leslie clan are:

* Cheryl Leslie, who is training to be a dietitian, and is mom of two children with celiac disease.
* Colin – a high school junior with CD who, since he was a freshman, has been running the Colin Leslie Walk and Vendor Fair, one of the largest regional events benefiting celiac disease.
* Carine – a middle school student, with CD and type 1 diabetes.
* Mike – Colin and Carine’s father, and strong supporter of advocacy

The panel will also include WCSSG Board members:

* Rory Jones, co-author of "Celiac Disease, A Hidden Epidemic"
* Pat MacGregor, founder of the Gluten-Free Restaurant Awareness Program
* Chris Spreitzer, co-president of WCSSG, founder of the Catholic Celiac Society
* Sue Goldstein, founder and past president of WCSSG, who leads our WCSSG new patient meetings.

Share your questions and concerns about the gluten-free diet and lifestyle. This informal meeting will provide the perfect opportunity to discuss everything from the kitchen to the school cafeteria, from family dynamics to workplace choices, eating in and eating out, shopping and snacking.

Plan to arrive by 1:30 to shop with our vendors:

Jake Bakes
http://www.jakebakes.com/

Millers Gluten Free Bread Company
http://www.millersglutenfree.com/

Curious Cookie
http://www.curiouscookie.com/cookies/glutenfree.asp

DeCicco Marketplace in Ardsley
http://www.deciccos.com/ardsley.html

Kettle Cuisine
http://www.kettlecuisine.com/gluten.htm?mode=show&product=90304

Glow Gluten free
http://www.glowglutenfree.com/

Katz Gluten Free
http://katzglutenfree.com/

No reservations are necessary to attend the meeting. We hope to see you there! For further information, please contact Sue Goldstein at suegldstn@ optonline.net.