Effecting Change

Cheerios

Please sign and share the petition on Change.org.

We are divided.

On one side of the gluten-free community who have gotten sick from the so-called gluten-free Cheerios, those who have seen them get sick and are refraining from trying them, and those who are aware of the processes and testing General Mills is employing and refuse to go near them.

The other side of the gluten-free community are those who have eaten the so-called gluten-free Cheerios without overt symptoms and those who have been compensated in one way or another to be cheerleaders for gluten-free Cheerios and are leading unsuspecting people into the the void.

You cannot ignore the reports of all the people who have said they have gotten sick when my post Pissing In The Gluten-Free Cheerios was shared on Facebook or on the Change.org petition I started. It’s there, in black and white. This is a high rate of reporting on something labeled gluten-free.

You would think that with all these reports, there would be more compassion from the community as a whole. That we would unite to make sure more of us in the gluten-free community don’t get sick.

Right?

I’ve seen comments from those who ate the gluten-free Cheerios, say they didn’t react, then wonder why people are upset. Or they are asymptomatic and say they’ll keep eating them.

Did we all forget that lack of symptoms doesn’t mean no reaction? That lack of symptoms could mean gluten is doing silent damage to your body? That enough silent reactions could lead to bigger health problems down the line?

How about those who are being rewarded by General Mills? The ones who  were flown up there and have been singing gluten-free Cheerios praises ever since?

Many of us got into blogging to share our stories and recipes. We do it without pay or any type of compensation. Eventually, some find sponsors who compensate the bloggers for their posts in favor of their product(s). I think there are only a handful of bloggers who can walk the line of advertising a product and maintaining the integrity of their blog.

Yes, I said integrity.

If you have integrity, how can you keep cheering on a product like gluten-free Cheerios and encouraging people to buy it when so many are falling ill?

As a former advocate in the mental health field, seeing wrong and wanting to make it right comes naturally. When a vice-principal sits across from me telling me he’s sure another student isn’t bullying my client because “he wouldn’t do something like that” when I know my client would lie to me, I don’t sit there and say, “Okay, if you say so.” No. I tell him he better take care of the situation or if I get another report of bullying from my client, I’ll make sure it will be the last.

Integrity, once lost, is hard to regain. Those of you beholden to General Mills need to re-evaluate what is more important: your integrity and the safety of the gluten-free community or monetary gain?

I don’t mince words. I don’t sugar coat. I don’t blow smoke. My former clients know this. While it stung being held accountable in the moment, they appreciated me because they knew my actions meant I cared.

This situation of people getting sick is unacceptable. After reading so many comments from people about their physical reaction, I started the petition. Action needed to be taken.

We need to unite. We need to stop thinking that just because “I didn’t react” that everyone else is wrong or out to get a food giant. We need to put aside personal gain and support those who are suffering.

This is a community issue and we need each other to effect change.

The Great Pizza Debacle

Socca Pizza

The gluten-free community was buzzing a week ago when Domino’s announced their new gluten-free pizza.  By buzzing, I mean swarm of angry killer bees.  I pretty much lost all productivity once I read the press release.

President and CEO, J. Patrick Doyle is quoted in the pres release,  “The prevalence of gluten sensitivity has become a real issue with significant impact on consumer choice, and we want to be a part of the solution. Now, the whole group can enjoy Domino’s with the addition of our new Gluten Free Crust.”

Wrong.

Next in the release, “While Domino’s new Gluten Free Crust is appropriate for those with mild gluten sensitivity, Domino’s and the NFCA do not recommend it for those with celiac disease. Domino’s and the NFCA found that while the crust is certified as gluten-free, current store operations at Domino’s cannot guarantee that each handcrafted pizza will be completely free from gluten.” (just a quote from the press release, not a quote from someone)

My blood was boiling.  Then I popped when I read this next part.

“The NFCA is thrilled that Domino’s Pizza has developed a product that will improve the quality of life for many of the estimated 18 million Americans who are gluten sensitive,” said Alice Bast, NFCA founder and president. “Not only is Domino’s Gluten Free Crust a huge win for much of the gluten-free community who can now get pizza delivered to their door, it’s also delicious. Customers aren’t going to believe they’re eating a pizza made on a gluten-free crust when they try it. And the variety of fresh toppings that are available is a giant leap ahead.”

I’m not a doctor.  I’m not a health expert.  I’m just someone with a chronic illness managed by a simple diet change who happens to be educated and continues to stay educated.  My late sensei would tell us in class all the time, “When you think you know it all, you know nothing.”  This is why I keep reading.  I know if I stop and feel like I know everything there is to know about Celiac and gluten intolerance, I really know nothing.

I know that all of us dealing with gluten intolerance, Celiac or not, react to gluten.  Our different diagnoses does not matter.  It may do different things to our bodies.  It may work silently.  In the end, we all still react to gluten.  It is a disservice in the press release that the attempt is made to try to say that the  pizza is for those with mild gluten sensitivity.  It is a disservice that Ms. Bast calls this pizza a “huge win.”   There is no win when Domino’s is not changing their prep procedures to ensure there is no cross-contact occurring in the kitchens where the pizzas are made.

My gluten-full friends were excited for me to have a new option.  However, when I explained that only the ingredients are gluten-free, but the prep would be the same as regular pizzas, even they asked, “How can it truly be gluten-free?”  I did not have to lead them to ask that question.  They all asked it on their own.  I either did a great job educating my friends or I have really smart friends.  Or both.  It amazes me that they, who are not living gluten-free, can come to this conclusion, yet a national food chain and a national foundation are praising this pizza knowing it not to be safe for all of us.

This pisses me off.

Example: I was reading comments from people who already tried the pizza and said they had no reaction.  Or saying the gluten-free person in their family has no reaction to cross-contact.  This kind of mixed message marketing saying it’s okay for those with mild gluten sensitivity, but not those with Celiac, only feeds into the misconception that no reaction = no problem with the gluten present.  It also does nothing to help those new to living gluten-free or those that do not stay educated on what gluten does to us.  Or those living on the banks of Denial.

If you listened to the Gluten-free Radio, hosted by Jules Gluten-Free, last week Thursday with Ms. Bast as the guest.  I never realized how increasingly angry I could get over an hour.  I shouted out a few things here and there.  Chaz would walk into the room and just shake his head.   I really can’t comment on specifics from the show or The Hulk might show up as I’m typing.  Then all you’ll see before The Hulk hits “Publish” is IYLGFLJHFIGLUYO(YTgFHBKJAGSLGKJHSLGLSHG.  We don’t want that, do we?  However, Ms. Bast did point out that their involvement and their Amber designation was to clear up confusion.  Yet, everything seems to get more and more confusing.

Ms. Bast put out this statement last week about the NFCA involvement.  She writes: “NFCA consulted with Domino’s on this launch and after reviewing operational procedures, we decided that we could not recommend this product for those with celiac disease. We urge those with non-celiac gluten sensitivity to exercise judgment in deciding whether to order this pizza.”  Wait.  Wasn’t she quoted in the Domino’s press release as saying this is a “huge win for the gluten-free community” earlier in the week?  And shouldn’t she know that gluten is a problem for all of us regardless of diagnosis?

One caller to the radio show pointed out that the NFCA’s involvement and Amber designation through their GREAT Kitchens program is seen by many in the gluten-free community as an endorsement of Domino’s and the gluten-free pizza.  I agree with that caller.  Think of a yellow light.  There is a lot of gray area there.  Proceed with caution. Slow down and stop.  Gun it and go.  Of course they mean for us to proceed with caution.   But, everyone has their own interpretation of a yellow light.  It frightens me that those new to the gluten-free diet or those who don’t stay educated would interpret the Amber as go for it.

If the NFCA wants the gluten-free community to get anything from their GREAT Kitchens program, it needs to be clear cut.  I tweeted, “I think NFCA should have a Red designation for their GREAT Kitchens program” while listening to Jules interview Ms. Bast.  There is no gray area or question about red lights.  You stop.  Period.  If a restaurant has gone to the NFCA because they want to offer gluten-free options for their guests, but will not change their operational procedures to ensure food safety for us, we shouldn’t be going near them.  Plain and simple.  Yes, these places know what they are doing and are ensuring food safety.  No, they know what they should be doing but aren’t doing it.

Dr. Alessio Fasano, Director of the Center for Celiac Research at University of Maryland,  released a statement in regards to Domino’s gluten-free pizza which made it clear we shouldn’t be eating it.

While the development of safe gluten-free products and safe dining establishments is always a welcome advance, we do not have the confidence that this product meets the safety standards we recommend for our patients. The introduction of cross contamination from a large chain like Domino’s represents a threat to our patients affected by gluten-related disorders, including celiac disease, gluten sensitivity, dermatitis herpetiformis (a skin condition), wheat allergy and gluten ataxia. As an international celiac research center with expertise in gluten-related disorders, we believe that individuals who have been diagnosed with a gluten-related disorder should NOT consume this product.

Everyone gets to make their own choices in what they eat, even when it comes to living a life with food allergies/intolerances.  If you have contemplated the Domino’s gluten-free pizza, I urge you to not try it.  Chuck E. Cheese is working on bringing their new gluten-free pizza to the market, but is currently only available in some Minnesota locations.  Naked Pizza also has a gluten-free pizza option and they are a company that uses sustainable resources as much as possible.

If you are in agreement about the NFCA’s Amber designation, 1 in 133 started a petition to get rid of it.  Please sign it and show your support!

*Note: If you are in the restaurant industry and want to provide a safe gluten-free or even allergy-free experience for diners in your establishment, the NFCA is not the only resource.  Allergy Chefs, Inc. has a training sessions conducted by Chef Joel Schaefer.  Chef Joel and his wife worked for Walt Disney World Resort for many years and they are the persons to thank for Disney bringing allergy-free dining experience for us.  Chef Joel is the one from whom I picked up the term “cross-contact.”  As he says, cross-contamination refers to bacteria that can be killed.  You can’t kill foods that are allergens.   

Remembering How I Got Here

This month is Thyroid Awareness Month.  It’s important for me to remember because 3 years ago this month, I was diagnosed with hypothyroidism.   A year later I began digging into the connection between gluten and thyroid functioning.

After all the reading I did, I was convinced enough to go on a gluten-free trial.  I should have been tested first, but hindsight is 20/20.

I have been gluten-free for nearly 2 years now.  I have been medication free for 2 1/2 years.  I have not used supplements to help support my thyroid for 1 1/2 years.

My hypothyroid diagnosis led me to make the following changes in order to rid my world of as many thyroid disruptors as possible:

  • Go back to making my own personal care products
  • Make my own all natural cleaners
  • Switch to non-fluoride toothpaste
  • Use a water filter (I use Zero)
  • Go off the pill
  • Change to a whole foods diet

Some of my hypothyroid symptoms that have resolved on a gluten-free diet:

  • Migraines (daily at one point in my life)
  • IBS
  • Heart palpitations/chest pains
  • Brain fog/inability to concentrate and focus
  • Difficulty remembering anything (former co-worker once told me my memory was like a filing cabinet)
  • Wild and unpredictable mood swings (not to mention getting angry way too easily)
  • Idiopathic neuropathy
  • Fatigue (extreme fatigue and not just being tired after a long day)
  • Low body temperature
  • Low blood pressure
  • Hair loss
  • Weight gain/inability to lose weight even with lots of exercise

These are the big ones.  There were others, too.  The only symptom I still have is the intolerance to cold temperatures.  My feet and hands get cold really fast and then the rest of me can’t tolerate the cold like I used to.  To me, it always feels 10 to 20 degrees colder than it really is, especially in the Winter.

When I was diagnosed with hypothyroidism and started learning about the symptoms over the first few months, I realized that this was something I had my whole life.  Migraines I chalked up to genetics because my dad has them, too.  I always had stomach issues (I’m pretty sure my mother thought I was just playing sick) and when I moved to Kentucky the stomach issues grew to include my entire intestinal tract.

Now, that I know this is all thanks to gluten, I wonder what my life would have been like had it been discovered earlier.  If you are reading this because you have hypothyroidism, too, but have never been tested or told it could be due to gluten sensitivity/Celiac, start talking to your doctor.  40 % of people with thyroid dysfunction have gluten sensitivity or Celiac.  That’s almost HALF people!

Some other things that can lead you in the direction of being tested other than thyroid dysfunction (and the symptoms I’ve already mentioned):

  • Other food allergies/sensitivities
  • Diagnosis of Sjogren’s or other autoimmune disorders
  • Family history of colon cancer
  • Osteoarthritis/rheumatoid arthritis
  • Diabetes
  • Gall bladder issues
  • Diagnosis of Autism, ADHD/ADD, Depression or Bipolar
  • Eczema, Rosacea and other skin disorders
  • Osteoporosis
  • Anemia/iron deficiency/B vitamins deficiency/vitamin D deficiency

I’m sure I missed some, but my awesome friend, Shirley, has a great tip sheet you can check out on her blog, gluten-free easily.

The sooner a proper diagnosis is made, the better the quality of life.  In the case of children, the better their chances for developing without delays.  I urge anyone who hasn’t gotten to the root of their problems and is still suffering needlessly to get tested if anything listed sounds like you.  If you have thyroid dysfunction and medication isn’t working for you, I urge you to get tested.  I was one of you.  If you went symptom by symptom while I was on Synthroid, some of them seemed resolved.  However, I was feeling worse overall.  The fatigue worsened and it was a struggle to get out of bed for work.

There is hope.  There is life after a diagnosis.  There is quality of life with the right diagnosis and following the right treatment.  For gluten sensitivity and Celiac, the only treatment is a gluten-free diet.  No pills required.  Only enjoying the rest of your life one day at a time.