Things That Make You Go Hmmmm!

thingthatmakeyougohmmm

Funny Story #1: We all have those times when we hear something and can’t believe we heard it.  Then, we have no choice but to assume that the person is kidding.  Then, if that is not the case, you just play along and are left shaking your head. Our line-cook, Kendall, had just that type of experience last week. I hope this one makes you laugh too!

Kendall was working the front counter when a customer and a friend came in to eat.  The customer is gluten sensitive, and the friend had never been here before. He had no food restrictions whatsoever.  So, Kendall explained the menu to the friend (who was in his late 20’s or early 30’s), we will just call him “Tom”.  Tom decided on our Cheese Steak Sub. Kendall went over condiment choices with him and he rattled off everything he wanted on his cheese steak:

Tom: “Mayo, Lettuce, Tomato, Sauteed Onions…and can I get gluten on it too?”

Kendall: “No, I am sorry; as I explained before, the facility is free of gluten.”

Tom: “Yeah, I know; but I CAN have Gluten, can’t you just add it to mine?”

Kendall: “No, I can’t. I am sorry.”

Kendall shared a glance with the regular customer and a smile.  Kendall later told me that she could not believe it, she thought he was kidding. However, the look on Tom’s friend’s face definitely said that he was not kidding.

So, this is definitely the first time we have had a customer who thought Gluten was a condiment that you can add to a sandwich!  We all laughed until our faces hurt.  But, this is a great reminder of how little the general public knows about Gluten.

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

A member recently posted on the Chesapeake Celiac Support Facebook page about Bourbon BBQ Sauce made by Giant…it makes a gluten free claim on the front of the label, but clearly has wheat as an ingredient in the soy sauce in it. The other issue is the Bourbon!  This is not allowed under the FDA Labeling. The law is that no ingredient that actually contains wheat, rye or barley can be used in a product bearing a GF Label, even if it contains less than 20ppm!  Hence, Gluten removed beers can no longer claim them to be GF because they can’t validate with testing that the Barley has been removed! (Schar products use a product called “codex wheat starch” that is processed to remove the wheat, so it is allowed, but they still have to say “contains codex wheat starch processed to remove wheat”.) So, you may be asking “how can this happen?”

There is no federal oversight; people can just do what they want until they get caught!  Pure ignorance on Giant’s part.  Here is the response Giant Food gave to the person who bought the product and inquired:

Irene, thanks for raising the question about this product. Our Own Brand’s Quality Team provided this explanation. Gluten is a general name for the proteins found in wheat, rye, barley and triticale. Thus, all products with wheat, contain some gluten. The Banjo BBQ Sauce contains soy sauce, which has wheat as a sub-ingredient. The wheat that is in the soy sauce, does contain gluten, but only a very, very small amount.

FDA mandates gluten-free labeling. In order for a product to be labeled “gluten-free”, it must have <20 ppm of gluten. This product has been tested for gluten, and not only does it meet the <20ppm threshold, but it actually contains <5ppm of gluten. Thus, we can guarantee that the product meets the standard to label the product “gluten-free”, even though it does contain very trace amounts of gluten.

We understand that this could be confusing to customers, and thus, in order to be 100% transparent, the supplier is working to reformulate the product to remove soy sauce. Post-reformulation, there will be no wheat listed in the ingredient statement and should reduce customer confusion. I hope this explanation helps. Should you have other questions about any of our Own Brand products please feel free to call the toll free number and our representatives will be glad to help.”

Oh, please!  That was a big lie.  So, if this is really true, why would they be reformulating it to remove the soy sauce?  Oh, and isn’t Bourbon made with Rye? Bourbon is 51% corn and the remainder is usually malted barley comprised of rye or wheat. There is no safe way to remove the rye, or at least verify that the rye has been removed.  So, the problem is the wheat in the soy sauce and possibly rye or wheat in the bourbon.  Those are my red flags.

Basically, Giant Food is telling their customers with Wheat Allergies and Celiac Disease that they don’t care enough about you to do it right.  They are also saying that when you catch us lying to you, we are still going to lie to you when trying to explain ourselves. They brazenly assumed that we all are stupid.

You still need to be vigilant out there and you need to understand the labeling laws yourself because there is no FDA oversight because the GF Labeling Law is VOLUNTARY not mandatory!

I won’t be supporting my local Giant Food any longer.  We had this issue a few years ago with a bourbon chicken that they were selling and claiming that all of their Deli Meats were gluten free.  They did not care then and they don’t care now.  This incident has been reported to Gluten Free Watchdog.

Great job Irene. Stay Vigilant Folks!

Which Spices are Safe to Use?

Spices

One of the most common questions I get from newly diagnosed customers with food allergies or Celiac Disease is “Which Spices Are Safe To Use?”  I always encourage everyone to do their own due diligence. However, back in the fall of 2014 and the middle of 2015 there was a huge panic in the food allergy community. Rightfully so; especially for those with life threatening Peanut Allergies.  It seems that a huge supply of Cumin was highly contaminated with peanuts.  Many companies were recalling and a few were not!

Here at ODC, we us McCormick Spices when we need dried spices, otherwise we use fresh. McCormick assured me that they were not affected.  Why weren’t they affected?  Because they have good manufacturing practices.

I was thrilled to see a follow up article by Allergic Living Magazine.  They put out requests for information to 10 different spice companies. However, only 3 companies responded. It is not surprising that the 3 who responded are the companies that I and most of our customers use when we need spices. They are: McCormick, Frontier Co-Op and Spicely Organics.  The following link is to the section of the article that shows you what each had to say and some information to help you find safe spices; Click Here

To see the big list of recalled spices during the cumin recall; Click Here

To read the entire Allergic Living article with all links; Click Here For Full Article

Be safe out there gang!

 

 

Guess Who Came to Dinner?

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Yes, that is Dr. Alessio Fasano, of the Center for Celiac Research and Treatment at Mass General. We had the pleasure of having Dr Fasano and his son back in the cafe for dinner this week. I was able to ask him a few questions in between.

I chose the questions that I get asked about the most by customers and those that affect me as well. My questions were about Gluten/Celiac Disease and it’s role in Autism, our Kidneys, our Skin and our Brains. I also asked about Glyphosate (Round Up) and it role, if any, in Celiac Disease.

Autism:

As many of you know, I have two nephews with Autism, so I have always been very interested in the connection between Celiac Disease, Gluten and Autism. Dr Fasano and Autism Speaks have been looking for a connection between Autism and Celiac Disease anf gluten . As of now, Dr. Fasano says that “about 5% of Children with Autism have Celiac Disease and most are Gluten Intolerant.”  Dr Fasano says “we know Gluten is a factor in Autism but we don’t know why.”

Glyphosate (Round Up) Sprayed on Crops:

Over the past year or so there has been a lot of information circulating on the web about Glyphosate, which is the ingredient used in Round Up weed killer.  It is also used on our crops to increase the yield before harvesting. Corn is one of those crops. So, I asked him about the connection, if any, between glyphosate (Round Up) being sprayed on our crops and if it is contributing to gut permeability (leaky gut) leaving us open to Celiac Disease.  He said that “we don’t know enough about it yet”. That tells me there are more studies that need to be done.

Celiac Reactions & Complications; Kidneys, Skin and Brain:

Kidneys: I also shared with Dr Fasano what my Nephrologist has told me about Celiac Disease and IgA Nephropathy (Berger’s Disease); the filters on my kidneys don’t work right and the little doors to the filters are getting the wrong message. So, I asked him what his thoughts were. He said;  “absolutely, it is very closely related to Celiac and sometimes the soldiers (immune cells), leave the intestine and attack other tissues, like those in the kidneys” (gallbladder, thyroid, brain, etc.).

I was telling him about my severe reaction after accidentally getting “glutened” in Jan 2015 and a new symptom I had after this episode. Normally for me, within a few hours I have severe acid reflux, the next morning I have a migraine followed by diarrhea and vomiting at the same time, then I get major bloating and knife like pains in my stomach. Then, within 24 hours I get flu like symptoms, severe fatigue and can not get off the couch.

Skin: On about day 3 or 4 I get a Dermatitis Herpetiformis (DH) rash and that itches and oozes and hurts and then the joint pain kicks in. I told him that I had a bad case of DH on my scalp, buttocks and arms and before I could say it he said: “it took 8 months to clear up”.  He was right on the money, I got “glutened” in January (I did a blog post about this) and it did not clear up until the end of August! (It cleared up because I had no further exposure to gluten. DH is most often misdiagnosed as eczema. It (the rash) can be biopsied for a Celiac Diagnosis, if you have this, bring it to you Gastroenterologist’s attention.)

Brain: By day 4 I had Ataxia (walking into walls, tripping and falling and speech issues).  New Symptom for Me: However, this time, by day 5 or so, I had MS like symptoms in my right arm and leg with heavy twitching. I had to pull over and it lasted for several minutes. He said “absolutely, it’s the inflammation; because it can affect the brain”.

I hope you found this information helpful. It was a pleasure having Dr. Fasano and his son back at One Dish Cuisine Cafe, Deli and Bakery! I know you want to know what Dr Fasano had for dinner. He and his son enjoyed our Eggplant Parm. Also, I know someone will say that the cafe looks different in the photo. It does look different because this photo was taken the last time he was here, for his book signing, in 2014.

 

Public Perception Of Celiac/Food Allergies

restaurant-gluten-free-joke

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 onedishcuisine@yahoo.com 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.