Things That Make You Go Hmmmm!










Serious Story #2:  Labeling Disaster at our Local Giant Food










Great job Irene. Stay Vigilant Folks!

Public Perception Of Celiac/Food Allergies


We all get to that place of utter frustration when it comes to dining out safely.  We walk away shaking our head saying “they just don’t get it”. Why is it so hard to eat out safely and how can we educate the public in order to change this? Let’s explore our plight and several ways that we can change the public’s perception.

Those who have Celiac Disease feel this frustration but we need to remember how much easier it is for those with Celiac Disease (CD) or Gluten Sensitivity (GS) than it is for those with life threatening Food Allergies (FA).  If you have both; it can be next to impossible to dine out. Those with Autism experience this when they put their child on a gluten-free or other special diet.

I feel like the Celiac Community just wants it all and they want it now; not really understanding why it is so hard for a restaurant to safely feed them. (Keep reading, I will tell you the top 4 obstacles to safe food)  Many clearly expect every restaurant to be able to safely serve their dietary needs.  For those with severe food allergies, they know it is life or death for them, so they don’t make such a big deal about it and simply choose to go without because it is safer. Yes, it is hard if you have CD or GS but it is even harder to have FA and that is why those with FA don’t take risks dining out because most places really don’t get it.  Think about it Celiacs; if cross contamination could kill you, would it be worth all of the risks that you take when dining out?

Where is the awareness? In Maryland they passed a Food Allergy Bill, but it is only voluntary. Only 3 of more than 30k restaurants took the training! Mmmm, it seems like the serious nature of a Food Allergy or Celiac Disease is not getting through to the general public.

Then, last month, Ted Cruz (running for president of the US) made an uninformed comment promising that he would not support the military supplying Gluten Free (GF) MRE’s (Meals Ready to Eat) to those who needed them. MRE’s are often used when deployed in remote areas.  This comment hit close to home for me and shows just how ignorant the masses are about Celiac Disease and Food Allergies. (A person with a wheat allergy would need GF MRE’s). I thought to myself; how can anyone be so uninformed? Yet, as I pondered this, Ted Cruz is certainly not alone when it comes to his ignorance about Celiac Disease or Food Allergies.

On Sunday, a friend and customer, Ben Andrasik, stopped in the cafe for a meal and some treats for his kids.  Ben served two tours of duty with the military in Afghanistan and wrote a book about his struggle and survival without GF meals. It gave us a chance to catch up and chat about some things. We discussed the public perception and we both feel that biggest struggle we face is lack of public awareness or understanding of the seriousness of Celiac Disease and Food Allergies. (You can read Ben’s book here at our cafe, it is in our library and it is called Gluten Free in Afghanistan by Cpt B. Donald Andrasik. You will have a chance to win a copy of his book at the end of this post.)

Contrary to what you might think; you can serve in the military if you have Celiac Disease. They just don’t go out of their way to safely feed you.  However, the military will accommodate a person who chooses to be vegan. Mmmmm.


The Top 4 Obstacles to Safe Food:

-# 1 Lack of Education of the general public about the seriousness of Celiac Disease and Food Allergies. The general public only hears about people eating gluten free as a diet trendnot as the only prescription to treat Celiac Disease.  In my opinion, that area is where our Celiac non-profits are failing us. The general public does not think Food Allergies are serious until someone they love has an anaphylactic reaction and this is shocking to me.

Let’s explore some statistics in the chart below. Notice how many Americans are living with Celiac, Food Allergies and Autism. Then look at the other diseases and how many are living with them. The numbers are far less for the rare diseases, but we all know what those rare diseases are and would not diminish their legitimacy or the prescription given to those who suffer from them! Since when does the only “prescription” to treat a disease come only in a “pill” or “injection” form from a pharmaceutical company? Why does the lack of a “pill” make Celiac Disease and the Gluten Free Diet not a legitimate disease and treatment?

I put this graphic together back in 2010 and it is still relevant today with a few updates to it…but it is still shocking.

CDGSAutismAllergies Photo

Given the numbers above, you would think that Celiac Disease and Food Allergies would be a top priority in the United States, but they are not viewed as legitimate by the mainstream public! Lets look at the totals as compared to Type 1 Diabetes:

Celiac Disease: 3 Million plus  18 Million Gluten Sensitive  = 21 Million

Food Allergies: 9 Million Adults plus 6 Million Children      = 15 Million

                                                                                                   Total = 36 Million Total

Type 1 Diabetes:                                                                               = 3 Million Total

How did we learn about many of the above rare diseases? Were we taught about them in high school? No. Did we have a family member with one? Possibly.  Primarily, we learned what those rare diseases were by their non-profit organizations and foundations raising awareness in mainstream media; via ads in TV, mainstream magazines and newspapers.

Remember Jerry Lewis doing telethons every Labor Day weekend for Muscular Dystrophy?  We hear about ALS (Lou Gehrig’s Disease), who did not see the “bucket challenge” last year?  All of the above rare diseases have gotten the word out because their non-profit foundations are utilizing mainstream media in addition to marketing to those affected by the disease.

There are just as many people living with Celiac Disease as there are with Diabetes..many have Celiac too, but you would never know it when it comes down to the attention given to each! If Type 1 Diabetes could only be treated by diet and there was no insulin, you bet your “arse”  restaurants would be pandering to this population.  However, Diabetics have two Rx’s; diet and/or insulin. Diabetics control diet by counting carbohydrates & reducing sugar.  Sugar and carbohydrates are required to be disclosed on nutritional labels making it much easier for a person to manage their diabetes.  Yet, a Celiac must avoid Gluten, and is not required to be disclosed on labels. Mmmmm.

#2: Gluten is not required to be labeled or disclosed on nutritional labels. This is the main reason that mainstream restaurants struggle to feed Celiac’s safely! Yes, the Gluten Free Labeling Law passed; but it is not mandatory; it is voluntary only. In the US they only have to disclose wheat! Rye and barley don’t need to be disclosed and gluten can hide in many forms, natural flavors is one place. Mainstream products don’t need to tell you if there is gluten in them or not, they tell you if they want to!  In the US, they have to tell you if the recipe includes the top 8 allergens: wheat, milk, eggs, peanuts, tree nuts, soy, fish, shellfish. Did you notice that rye and barley are not on the required list? (In Europe and Canada this is less of a problem because they label gluten and many additional allergens).

The #3 Reason: Manufacturing companies don’t need to prevent cross contamination! Yes, you read that correctly.  They only have to tell you what is purposely put in the product and if it contains the top 8 allergens. They don’t have to tell you if they accidentally contaminated the product with any allergens or anything else when processing or packaging.  They are also allowed to use the term “natural flavors”; so they don’t give away their “secret” ingredients; which could be anything!

#2 and #3 are why mainstream restaurants can’t safely feed you!  Really, come on, why would you expect them to get it right given the above? Are you having a light bulb moment?

The #4 Reason: We are not being heard by the general public! Currently, our associations are only getting the word out in media that is targeted at those of us already living with Celiac Disease or Food Allergies! We will never be taken seriously if the mainstream public is not educated and the mainstream media is only talking about Gluten-Free Fad Diets rather than Celiac Disease &/or Food Allergies.

Open any GF/AF Magazine and you usually see an ad from one of our associations. However, you don’t see this type of ad in mainstream publications.  So, when a person running for president of the US is clueless about Celiac Disease and does not know that the GF Diet is the only Rx for it..that tells me our message is not being heard by the general public.

On the contrary; if Ted Cruz made a remark like that about diabetics and pledged not to provide insulin or a low carbohydrate MRE’s for diabetics in the military and did not know what diabetes was; we would all say he is clueless and not fit to run for president being so un-informed! The world knows about diabetes. The world and the mainstream media don’t know about Celiac Disease or the seriousness of it because our message is not being heard!  Isn’t that amazing when there are just as many people with Celiac Disease! (not to mention Gluten Sensitivity and Wheat Allergies)

How Do We Get the Attention Needed for Celiac and Food Allergies?

We can whine and complain about not being respected but that does us no good.  What we need to do is demand that our support associations spend some of our donations on a media campaign to get the word out into the mainstream. If you flip through a gluten free magazine or food allergy magazine you see ads for associations.  I would love to see those ads in Time Magazine, People Magazine or in major newspapers. They would just need to gear the ad towards the seriousness and symptoms, thus creating awareness.  By putting the advertising money into mainstream news media; the public will be educated about the seriousness of our plight. It will raise awareness and diagnosis rates! (The Autism community has done a great job about getting their message heard). Even my local Quest Diagnostics advertises symptoms of Celiac Disease and the blood test for it in a big poster in their waiting room.

Our dining out problems won’t be solved until there is a ODC Cafe, Deli, Bakery in every major city or if we change our labeling laws, manufacturing regulation and educate the public about Celiac & Allergens..

Beaver and Wally

“Gee, Wally, I wonder which one will happen first?

“Ah, come on Beaver, I am thinking more ODC’s!”

Without comprehensive changes in all four areas, it is useless. Example: the voluntary GF Labeling Law is not currently enforced because it is voluntary without oversight. Hence; General Mills recalled 1.8 million boxes of not really GF Cheerios.  Mmmmm.

-The general public must be educated about the seriousness of Celiac/Food Allergies.

-We must have stricter labeling; mandatory gluten disclosure and stricter food production laws in order to ensure safe food.

In the US, we united around the task of sending a man to the moon (my uncle was using a “slide rule”, before computers, to do the math in order to make it happen). Somehow, 50+ years later, we can’t unite around educating the general public or passing laws to serve safe food to those with celiac or food allergies.  I hear horror stories from customers who tell me about people saying “nobody had food allergies when I was growing up, they are just made up” or, “a little bit won’t hurt you”.  As I have said before, we can send a man to the moon but we can’t safely feed our people and that is just stupid!

How do we change this?  So, yesterday, when Capt Ben and I were catching up and discussing Ted Cruz’s comments we both agreed that the mainstream does not recognize Celiac Disease as the reason for the GF Diet. We can whine among ourselves or we can ask our associations to put some of our donations towards  a mainstream media campaign and get the word out to the general public!   With Celiac Diease Awareness Month coming up in May, Ben was kind enough to donate 10 books for me to give away for this blog post.

Here is how you win a copy:

Send me your creative suggestions on ways to get the word out and fix the 4 big problems:

  1. How can our associations get the word out to the general public about the seriousness of Celiac Disease and Food Allergies?
  2. What can each of us do to personally further our own cause by spreading awareness?

The 10 best suggestions will get a free copy of Gluten Free in Afghanistan! Email me at by Tuesday 4/12/16. Make sure you include your name and a way to contact you if 1 or more of your suggestions wins! (I will post the top suggestions in the next blog post)

Thanks Capt B. Donald Andrasik for your service to our country (a country who is unwilling to serve you a safe meal while you are serving us by defending our freedom)!  Gluten Free in Afghanistan is a great read and it should comfort you to know that Ben survived two tours in Afghanistan.