Our Food Testing Results; How Labs Test Food for Allergens

As many of you know, periodically we send out some of our food to a lab for allergen testing.  Even though our facility is free of allergens, we also count on suppliers to provide us with some ingredients.  Periodically testing our products gives us that extra confidence. (you can see report at the bottom)

This time we tested our Chocolate Cupcakes, “Rye” Bread and a Blue Menu Cheese Pizza. We have the lab test for the following allergens:  Peanut, Almond, Egg, Hazelnut, Total Milk Protein, Casein Protein, Gliadin (Gluten) Walnut, Shellfish (Crustacea), Soy, Sesame, Cashew and Pistachio.

It is important to understand how testing works. The lab has a very specific way of testing food for the presence of allergens.  The results come back in ppm (parts per million).  I am going to make this as simple as possible to understand.   The first thing you need to understand is that zero ppm does not exist; below, I explain why.

When an item is being tested, they assume it is at  0 ppm of the allergen.  They take the sample and inject 2.5 ppm (or some quantity) of the allergen into it. Then they test it to see how many ppm of the allergen it contains.  If it comes back at 2.5ppm, then there is no allergen detected..because they put 2.5ppm of the allergen into the food item. If it comes back at 5ppm. they know it contained 2.5 ppm of the allergen before injecting the allergen into it.  For an item to be called GF it must test less than 20ppm of gluten.

Some companies are certified to 10ppm (GIG), we are certified to 5ppm by the Celiac Support Association.  These companies who give GF Certification require the company to test their products and they charge the company an annual fee to stay in compliance. Companies that do this are those that take it seriously! Remember, the federal law only encourages companies making a GF Claim to test their products..it is not required by the law and the type of testing is not mandated either.  Look for CSA seal or GIG seal to be sure it is GF!

So, when you hear people saying that they want 0 ppm test results; it is just not possible. The test results show what the Detection Limit is (as low as the lab can go at detection) and the Methods they used to test the product.  Usually it ranges between 2.0 and 2.5 ppm. For gluten the testing can only go as low as about 5ppm.

How do I visually understand a Part Per Million?

“If you divide a pie equally into 10 pieces, then each piece would be a part per ten; for example, one-tenth of the total pie. If, instead, you cut this pie into a million pieces, then each piece would be very small and would represent a millionth of the total pie or one part per million of the original pie. If you cut each of these million minute pieces into a thousand little pieces, then each of these new pieces would be one part per billion of the original pie. To give you an idea of how little this would be, a pinch of salt in ten tons of potato chips is also one part (salt) per billion parts (chips).” *SOURCE: Cornell click here for more

When gluten is being tested, it is a little bit different. If they are testing Gliadin; only 50% of gluten is available as gliadin…so to calculate the results you need to multiply the gliadin ppm by 2!  So, if it is 2.5 on gliadin, it would be 5 ppm for gluten.

Testing is not cheap, this round of testing cost several thousand dollars. Here is what our testing results looks like! 

Father of 3 Food Allergy Kids Created App to Find Allergy Friendly Restaurants

AllergyEats is the leading web based guide to finding allergy-friendly restaurants nationwide. I had the pleasure of interviewing Paul Antico. He shares why he founded the site and how he handles dining out with three children with multiple different food allergies and how he feels mainstream restaurants respond to food allergic diners.

What inspired you to found the AllergyEats Website?

About 10 years ago, my wife and daughter were out of town, leaving me and my 2 food-allergic boys to enjoy a “guy’s weekend.”  I wasn’t as well-practiced in managing my kids’ food allergies as I am now, though I knew how to protect them (and, of course, how to use an epinephrine auto-injector).  On Saturday night, I took the boys out to eat around 7PM (first mistake – prime time).  We went to one of our “go-to” restaurants, but the wait was 75 minutes, so we moved on.  At our second “go-to,” the wait was about an hour.  Same as our third.  We didn’t want to wait that long anywhere.  Unfortunately, I had run out of “go-to” restaurants and realized that I wasn’t terribly comfortable determining on-the-fly if a restaurant could accommodate our boys or not.  We ended up driving for about 2 hours – the boys crying in the back of the car – until we ended up at a “greasy pizza joint” that had egg-free pasta and could serve both my kids.  But as I was driving, and reflecting on the many times my family has gone an hour or two trying to find a restaurant we’d be comfortable at – be it in a big city like New York or a smaller town like Lack Placid – I kept saying to myself “I wish there was a guide! I wish there was a guide!”  Being in the business world for 15 years, at that point, I realized there was an unmet need and a market of food-allergic diners and their families that really needed such a guide.  So 2 years later, when I left my job in the financial markets, I decided it was time to start AllergyEats and fill that void.

What allergies do your children have? 

I now have 5 children, 3 of whom have food allergies.  My 19-yo son has had a tree nut allergy his whole life, experiencing 2 anaphylactic events (not including the few we didn’t understand before he was diagnosed – we got lucky!).  My 16-yo daughter has no food allergies.  My 14-yo son currently has allergies to tree nuts and sesame.  He has outgrown eggs entirely – baked and raw – and even outgrew peanuts.  He also has EoE (eosinophilic esophagitis) that reacts to dairy.  My 9-yo son has no food allergies.  And my 7-yo daughter has had an egg allergy her whole life, with – so far – no sign of outgrowing it.

What is the main goal of the AllergyEats website and app?

There are two primary goals of AllergyEats.  The most important, of course, is to provide a valuable tool to the food allergy community that hopefully makes the dining out process easier and more comfortable by providing them with crowd-sourced information showing which restaurants have been better choices than others for food-allergic diners.  The secondary goal is to reward those restaurants that make the effort to properly accommodate our community and thus incent other restaurants to take the appropriate steps themselves.

What is the biggest challenge that you see facing people with food allergies who want to dine out?

The biggest problem is accepting that there is ALWAYS risk – no restaurant is perfect (though One Dish Cuisine may cause me to re-think that) – and making the decision about whether you can accept that or not.  It’s not easy – anaphylaxis can be terrifying, even when you know you have your epinephrine with you.  Of course, you want to minimize your risk by choosing an appropriate allergy-friendly restaurant, which is where the AllergyEats app and website come in.  And, most importantly, YOU have to do your part by: a) never dining out without epinephrine, b) ALWAYS disclosing all your allergies to your server (and possibly the manager or chef), and c) visually inspecting your food as best as possible before eating it.  I’ve found that the “bad events” that happen at restaurants usually involve a breakdown of responsibility by BOTH the restaurant and the diner.  We need to take care of our end of the bargain, so those 3 points above are critical.

Are mainstream restaurants taking food allergies more seriously than they have in the past?

Absolutely.  It’s becoming harder and harder to ignore with so many restaurant diners disclosing food allergies, and even the stingiest of restaurants/chains will eventually understand the spending power of the food allergy community and those they dine with.  I find that smaller, nimble chains seem to be on the front-end of the wave.  Many independents are there too.  The laggards tend to be larger chains, though that is by no means universal.  AllergyEats publishes a list of the Top 10 Allergy-Friendly Restaurants in America each year (coming at the end of February this year), and you can see that there are large chains that do “get it”, though the average score – from AllergyEats users themselves – is generally much higher for the smaller chains.

What are the biggest obstacles a restaurant has to overcome if they want to provide allergen safe meals?

The biggest obstacle is also the simplest – commitment.  It truly is that easy.  Whether the owner of an independent restaurant or the CEO of a chain, that individual’s attitude toward accommodating food-allergic diners will set the tone for all employees.  The training is easy.  The financial burden is minimal.  The disruption to operations in making appropriate changes is almost nil.  So it all comes down to commitment.  Find me an owner who cares about food allergies and I’ll show you an allergy-friendly restaurant.  The reverse is also true.  Find me a CEO who pooh-poohs food allergies and I’ll show you a chain that isn’t safe for our community.

Is there a way for mainstream restaurants to be trained in handling food allergies?

Absolutely.  There are very basic programs online that, while they won’t make a restaurant very allergy-friendly, they will incrementally increase the knowledge of a restaurant’s staff.  But there are also bigger, all-encompassing programs as well for those restaurants that are ready to make the all-in commitment.  The one that is making the most headway is AllerTrain.  AllerTrain does on-site training and well as train-the-trainer programs for larger chains.  They are training restaurants, colleges, entertainment venues, and more.  They do have online modules as well, but the most comprehensive training is provided face-to-face, generally onsite.  Outside of AllerTrain, there are independent trainers as well.  And many restaurants develop their own programs from the knowledge or experience of key employees.

How many times a week do you dine out with your allergic children?

We don’t shy away from dining out.  When we’re home, we usually go out about once every two weeks, though about once each week in the summer.  However, we travel a lot.  We have family in 4 different cities, we like to vacation, and our kids – like so many others – are involved in a ton of activities, some of which have us doing overnight travel.  We also now have to visit our oldest son in college!  When we travel, we eat out most nights.  So I guess my best estimation is that we eat at restaurants probably 50 times a year.  We probably order in another once per week.  And while we certainly have our “go-to” restaurants at home and in some of our destinations, we do like to explore and gain some variety where possible.  So, using AllergyEats of course, we find new favorites as we go.

How do you handle vacations with three of your five children having food allergies?

We’re old pros at this!  After 19 years, we’ve developed a routine.  Really, though, we generally do not have problems dining out.  Using AllergyEats, we do our homework in advance.  Sometimes we have to take a flyer on a restaurant that’s not yet rated on AllergyEats.  Either way, we periodically come across a restaurant that we just don’t feel comfortable can keep our kids safe and we politely leave before ordering.  But that’s rare and we no longer have to search for an hour or two to find a restaurant like we used to.  We find most restaurants want to accommodate our food-allergic kids, so we just have to work with them regarding what they have, what is safe, and how to prepare it safely in the kitchen.  I’m happy to say that in all our years of travel and dining out, “the system” (the dual responsibility of the restaurant and ourselves) has only broken down once, exposing my middle son to dairy.  And the mistake was 100% on our end.  Certainly, other restaurants have made mistakes, but not without either us or them catching the errors in time.  So think about it – our family has had hundreds of meals from restaurants without a single mistake on their part that hasn’t been caught!  Of course, our epinephrine auto-injectors are with us wherever we go and we usually have some basic food like soy nut butter and crackers in our room for a quick, safe snack.

How do you educate schools to keep your children safe?

Fortunately, I haven’t had to be a pro at this.  The primary/middle school my kids have attended from age 3 through 8^th grade, Inly School in Scituate, MA, is extremely allergy-friendly.  They won an award from FAAN (Food Allergy and Anaphylaxis Network), one of the precursors to FARE (Food Allergy Research and Education), in 2011 for food allergy excellence.  All staff members are diligently trained and the processes and procedures in place are great.  The school has become known for this and actually brings in some students BECAUSE they are so allergy-friendly.  As the kids have moved onto High School and now College, we’ve found that these schools generally have a program and set of rules in place.  They aren’t as safe as Inly School, by any means, so our kids have to be smart about keeping their epinephrine with them, asking the right questions, taking proper precautions – basically, they have to do what they’ve learned and seen my wife and I do for all these years.  And so far, so good.

How do you handle it if there is an accident and one of your children needs to use their Epi-Pen?

Fortunately, in all these years, we have only had 2 incidents that needed an epinephrine injection.  The first was a tricky delayed onset reaction.  I say tricky because our kids react to many of their allergies without anaphylaxis, needing only Benadryl to ultimately feel better.  In this case, my oldest (with a tree nut allergy only) ate a chocolate ball at a nut-free event.  His throat started to itch, as it does when he has non-dangerous oral allergy syndrome from exposure to some fruits, but this one was a little worse.  Regardless, with us thinking the food was nut-free and the signs pointing to OAS, we went with Benadryl.  Unfortunately, the symptoms weren’t improving.  One could definitely say we should’ve used the auto-injector then (if not earlier), but we actually tried another dose of Benadryl.  Same result.  I prepared my son until he eventually made the decision for us.  “Hit me.”  Boom.  Immediately, he felt better.  (Turns out he had a biphasic reaction – a second anaphylactic event in the hospital – so we were very lucky we finally took the appropriate action.)  We believe, by the way, that the chocolate ball was cross-contamination with tree nuts.  A year later, while teaching at a farm camp, this same son thought he might have accidentally ingested something with tree nut residue in it.  He wasn’t sure, but was feeling symptoms.  Realizing how easily and quickly the epinephrine auto-injector worked the last time, he didn’t hesitate to use it himself.  In hindsight, and while we can’t be sure, I don’t think he was having an allergic reaction – I think anxiety symptoms made it hard to tell.  Yet, either way, he did the right thing.  When in doubt, use the epinephrine.  It is generally considered a very benign treatment that can rarely do any harm to you.  And do not wait as long as we did in that first event.  Anaphylaxis can spiral out of control quickly, even if delayed, and getting epinephrine in the body early is critical.

Do you blame yourself when an accident happens? What emotions do you go through?

Of course I do.  Isn’t that true when anything goes wrong with one’s kids?  In fact, forgetting food allergies for a second, I’m constantly wondering how ALL my past and current actions are affecting the lives of my kids.  (I hope that just makes me a good father and not a lunatic!)  However, I understand that I’m human and mistakes happen, so while I feel terrible and guilty, I apologize to my son or daughter and move on.  They understand that these things happen too.  It stinks, but it’s life – and we all need to accept it.

What would be the ideal dining out situation for you and your family and do you ever think you will feel totally comfortable dining anywhere.

Fortunately, we’ve had many, many very comfortable restaurant meals, but that is also a product of our long experience.  We’ve been doing this long enough to know the best questions to ask and to “read” the staff’s responses well (verbal and physical).  In the optimal case, we would find a restaurant known for their ability to accommodate food-allergic diners (yes, you know where we find them), have a conversation with the staff that shows a real proactive zeal for wanting to satisfy us, and have them proactively reaffirm all the steps they took when the bring the meal (separately or clearly marked) to our table.  That all said, we do still have some “on edge” experiences where we believe the restaurant can accommodate us, but we’re not entirely secure with their food allergy knowledge.  In those cases, we usually have to walk through their menu and their process in the kitchen step by step to ensure that – even if they don’t have broad food allergy knowledge – they will be able to make safe meals for our kids.  Our epinephrine is always with us!

Do you think the general public will ever have a thorough understanding and respect for the serious nature of food allergies?

I hope they never have to – because that would mean a cure is found before broad public acceptance has a chance to take place!  But realistically – because unfortunately we have to accept the fact that a cure is nowhere in sight – yes, I do think the general public will eventually have a healthy respect for the seriousness of food allergies, if not a broad understanding.  Let’s face it, most people in their 40’s and younger today probably know someone with food allergies.  And for the younger cohort in particular, once they actually get to know someone with food allergies, they tend to be compassionate and accept the seriousness of food allergies.  Further, recognize the surge in food allergies that has taken place in our kids over the past 20 years.  Logic would suggest that almost all people 20 years old or younger have grown up with or gotten to know friends with food allergies.  Our kids are more accepting than our older generations; thus, I think the trend is our friend and broader acceptance is taking place every day.

What do you see as the biggest obstacle to widespread respect and understanding of food allergies?

Time.  The younger generation gets it, and each day they become a larger part of the population.  The older generations are also coming into contact with food-allergic individuals more and more each day, with many of them accepting it as well.  I’ve seen the acceptance improve dramatically over my family’s 19 year journey.  It will continue.

What advice can you give to parents of a child with newly diagnosed food allergies?

Do your best not to panic by recognizing that millions and millions of parents have been in your shoes.  Yes, this can be terrifying – we all love our kids more than ourselves – and it can feel overwhelming, but as you start this journey you’ll soon learn that it’s manageable, even if not always (or ever!) comfortable.  Each step has it’s challenges – shopping for safe food, eating food made by a family member or friend, dining out, starting your child in school, going on vacation, having your kids eat out with friends, eventually going to college, etc. – but you take each of these steps one at a time.  Support groups like Kids With Food Allergies Foundation (www.kidswithfoodallergies.org) can be a big help in the beginning, as can local support groups, and online forums.  Of course, finding friends and acquaintances who have been down this path can be extremely helpful as well.  Realize too that, as you proceed down this path, you need to teach your kids all along the way, preparing them for their ultimate independence.  Of course, rule #1?  Never find yourself without epinephrine nearby.

What do you see in the future for AllergyEats?

For now, our focus continues to be on attracting new visitors to our app and website, and building our database of ratings.  A lot of people in this world aren’t online raters in general (I’m one of them), but we have to impress upon these individuals that our food allergy community is all in this together and that each new rating someone adds on AllergyEats makes the app and website even more valuable for future food-allergic diners.  (And yes, I AM a rater on AllergyEats, of course.)  Like many other small businesses in the food allergy space, we’re also trying to execute a business model that can generate a profit (or at least breakeven) since we’re not a non-profit and can’t attract grants and funds in the same way.  If we’re successful in doing so, the opportunity for AllergyEats to expand both vertically and horizontally is awesome.  Our platform lends itself to many, many other options.

I am so grateful that Paul has developed this site to help us find allergy friendly dining spots. Please check out the site!  Click Here for AllergyEats website

Today Show Makes Fun of Nut Allergies & Epi-Pens

Well, considering that this is food allergy awareness week; I was even more horrified to see this clip from the Today Show. Matt and Al not only make fun of food allergies in this clip, they go so far as to bring in the Epi-Pen. I can’t help but wonder why they decided to make light of nut allergies and Epi-Pens.  They easily could have made fun of sugary or high carbohydrate items and then made light of the insulin that a diabetic needs.  Why is this happening? At the end of this post, I have symptoms and a great photo you can use to raise awareness.  See video clip below:

click here for short clip from Today Show

Quite frankly, I think this is happening because food allergies are not taken seriously and the same goes for Celiac Disease.  This is seen all the time when people make fun of the gluten free diet. This is the first time where I saw two grown men literally make fun of nut allergies and epi-pens. Everyone is entitled to free speech…and I defend that right, therefore, I don’t take this personally.  What Matt and Al said in this segment says more about them then it ever will about those with food allergies.  However, that being said, it is a bad example to set for others and I am worried that food allergies will continue to be marginalized. Is it because there was no sign on the buffet that said “contains gluten” and that is why they did not go after the gluten free diet? I have some insight into why I think this is happening.

In our gluten and allergen free cafe, I see people coming in every day claiming a gluten allergy and claiming food allergies.  It is work to try to figure out what we are really dealing with.  There are people who don’t like mustard so they declare it an allergy and have us shut down a kitchen line and keep everyone else waiting longer to be served. We serve them their meal without a pickle and we get an angry customer. It turns out that they just “don’t like” mustard and they wanted the pickle that is made with whole mustard seeds!  The difference is that we are equipped to deal with many allergies…mainstream restaurants are not. When I talk with other mainstream restaurant owners they say that just about every 5 tickets they are having an “allergy” flagged.  They don’t know which is an allergy and which is a sensitivity, so it causes many problems for them because they are not set up to deal with this on a regular basis.

The problem is that we have customers who come in for the first time who have minor food sensitivities or who are on an elimination diet and they claim an “allergy” too.  We have to determine what is what.  Our kitchen would need to be shut down and cleaned on every other order if we were not detectives at the front counter.  Trust me, we can usually tell the difference between food allergies and someone new with food sensitivities; but we still have to ask many questions to be sure what we are dealing with. Then, if needed,  we educate the customer about what we do and what is an allergy and what is a sensitivity.  Nothing makes us happier than when a customer comes in and says: “I may have food sensitivities and I am on an elimination diet and I need to avoid these foods right now”.  My thought bubble is : “great, and thank you for not faking a serious food allergy”.

On Mother’s Day I was talking to a nice couple from New Jersey and they said, “we knew nothing about food allergies until our child had a serious food reaction”. The awareness and the seriousness of food allergies is just not out there in the mainstream. My biggest fear is that this type of marginalization of food allergies will continue; making it harder for those with legitimate food allergies to be taken seriously.

We all have to do our part to raise awareness about the serious nature of food allergies.  We need to start in our own personal circles of influence via our facebook pages, twitter pages, schools, workplaces, etc.  Please join me and start spreading awareness today; let’s change the tide together! Below are signs and symptoms from FARE (Food Allergy Research and Education) for mild and severe symptoms. Also, it describes how a child might describe what they are feeling.

If you’re introducing a new food to your baby, keep an eye out for these symptoms:

• Hives or welts.
• Flushed skin or rash.
• Face, tongue, or lip swelling.
• Vomiting and/or diarrhea.
• Coughing or wheezing.
• Difficulty breathing.
• Loss of consciousness.

• Mild symptoms may include one or more of the following:
  • Hives (reddish, swollen, itchy areas on the skin)
  • Eczema (a persistent dry, itchy rash)
  • Redness of the skin or around the eyes
  • Itchy mouth or ear canal
  • Nausea or vomiting
  • Diarrhea
  • Stomach pain
  • Nasal congestion or a runny nose
  • Sneezing
  • Slight, dry cough
  • Odd taste in mouth
  • Uterine contractions

Severe symptoms may include one or more of the following:

• Obstructive swelling of the lips, tongue, and/or throat
• Trouble swallowing
• Shortness of breath or wheezing
• Turning blue
• Drop in blood pressure (feeling faint, confused, weak, passing out)
• Loss of consciousness
• Chest pain
• A weak or “thread” pulse
• Sense of “impending doom”

Severe symptoms, alone or in combination with milder symptoms, may be signs of anaphylaxis and require immediate treatment.

How a Child Might Describe a Reaction

Children have unique ways of describing their experiences and perceptions, and allergic reactions are no exception. Precious time is lost when adults do not immediately recognize that a reaction is occurring or don’t understand what a child is telling them.

Some children, especially very young ones, put their hands in their mouths or pull or scratch at their tongues in response to a reaction. Also, children’s voices may change (e.g., become hoarse or squeaky), and they may slur their words.

The following are examples of the words a child might use to describe a reaction:

• “This food is too spicy.”

• “My tongue is hot [or burning].”

• “It feels like something’s poking my tongue.”

• “My tongue [or mouth] is tingling [or burning].”

• “My tongue [or mouth] itches.”

• “It [my tongue] feels like there is hair on it.”

• “My mouth feels funny.”

• “There’s a frog in my throat.”

• “There’s something stuck in my throat.”

• “My tongue feels full [or heavy].”

• “My lips feel tight.”

• “It feels like there are bugs in there.” (to describe itchy ears)

• “It [my throat] feels thick.”

• “It feels like a bump is on the back of my tongue [throat].”

If you suspect that your child is having an allergic reaction, follow

your doctor’s instructions and treat the reaction quickly.

Scroll down for a great poster you can copy and paste to your social media!

Learn more through FARE Click Here

 

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 trend…not 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.

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..

“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.

 

 

 

 

 

 

 

9 Yr Old’s Food Allergy Birthday @ One Dish Cuisine

Most children can go to parties and eat anything they want, they can go to sleepovers and their parents don’t have to worry about food making them sick, or worse, killing them.  I know that I sometimes take for granted what we do here and how special our cafe, deli and bakery is for those children with Celiac Disease and/or Food Allergies. (see photos below)

A few weeks ago I was giddy, like a child, as we hosted a birthday party for 9 year old Matthew; who is Allergic to: Wheat, Rye, Barley, Peanuts, Tree Nuts, Egg, Shellfish and Sesame. The best part was that he was able to have Pizza, Cake and a Video Game Truck out in our outer parking lot. Even better; Matthew’s friend, Nick, also has a Milk Allergy and was able to come in and order whatever he wanted and enjoy the same cake as the rest of the gang!

Twenty of Matthew’s closest friends and family were here at One Dish Cuisine Cafe, Deli and Bakery for some fun and safe food. I don’t know who was more excited, me or Matthew. It truly made my day to be able to provide a safe environment for him.  Watching his excitement being able to have all of his friends at his own party was a thrill for me and the staff here too.  The best part was that his friends were so thrilled to come to “Matthew’s Restaurant” and be able to eat a meal and have birthday cake with him; instead of Matthew watching them eat! His friends see him go without at school and at other children’s parties and they were so tuned in to how special this was for him.  The best part is that all of the kids loved the pizza and cake.

This is what makes me wake up and smile coming to work each day!  Just give us a call if you need to set up a special day for someone in your life.

 

 

 

 

Drink the “Drano”; Dining Out Part 2

Last week I told you all about the anxiety I was going through prior to meeting an elementary school teacher and classmates out for dinner in Annapolis.  In this post I will tell you all how I handled the situation and then touch on the stigma that we all live with when it comes to Celiac Disease, Gluten Sensitivity, or Food Allergies and how we can get the message across about how serious our illness is to the “doubters”. (We get to the “Drano” which is a blue liquid, toxic, drain de-colgger at the end)

I arrived early at the Thai Restaurant and talked with the waitress. I told her about my experience a couple of years ago.  She said they get a lot of requests for GF meals and that they use clean pans and utensils but can’t make any guarantee that my meal will be GF. Then she added that she has been there for a year and a half and has never been told that they got anyone sick.  I asked her if they see many people with Celiac Disease and she said that the majority are just making a “dietary choice” and not Celiac. I explained that I have Celiac and I did get sick last year and that a person who is just making a “dietary choice” probably would not know if they were exposed to gluten or not.  I told her that I appreciated her honesty but could not take a chance dining there. She clearly understood me and the seriousness of my situation.

My friends arrived and we enjoyed some wine. When it came time to order I just explained that I have Celiac Disease and it is not safe for me to eat there and that I planned ahead and ate at home.  Everyone understood, one “teared up” and I explained that it is no problem for me and I just want to enjoy everyone’s company. That was the end of that and we all had a great time.

I thought about how lucky I was that this went so smoothly and was so thankful that I did not hear any of the nonsense that we all have heard from family and friends at one time or another. We have all heard the term “drink the Koolaide”.  Well, I have my own term “Drink the Drano”. Below are the insane things we often hear from doubters followed by my standard answer that I give. Many of you have heard me say this in my restaurant and in previous articles. People are very “visual” I have seriously considered carrying a little plastic container of blue dish soap with me. It would be my prop of “Drano” and would come in handy in every situation. (see photos at bottom)

“Just a little won’t hurt you” – “Really? Drink this Drano first and let me know if it hurts you”

“What is the worst thing that can happen?” – “Drink this Drano and find out”

 “It won’t kill you”– “Drink this Drano and let’s see how you make out”

“I am a vegetarian; I know how you feel”– “Drink this Drano and let me know if this is how you feel when you don’t stick to your vegetarian diet”

“Are you trying to lose weight?” – “Drink this Drano and tell me if it would be worth avoiding at all costs”

“I heard that is a FAD.” – “Drink this Drano and let me know if avoiding it will be a FAD or a way to avoid illness for you”

“I read on the internet that you can have sourdough bread and wheat grown in Germany” – “Drink this Drano and let me know if you want to buy into that nonsense”

“How can you survive without bread” – “Drink this Drano and you will see why not eating bread is the only way I can survive”

“It is gluten free; there is no wheat in it.” (Chef to Celiac who was questioning why there is Barley Soup on the GF Menu..yes; it was real barley in the soup). – Run to the nearest exit!

I chose to make a stand for myself and for all of those with Celiac Disease and Food Allergies by telling the waitress that it was not safe for me to eat there!

What are your thoughts? Will you make a stand? Would the “Drano Challenge” help you when your Celiac/Food Allergies or Gluten Sensitivity are not being taken seriously?  Feel free to leave comments here on the blog.

 

 

EOE; “When Food Becomes Foe”

EOE: When Food  Becomes Foe! (From October 2014 Newsletter)

Eosiniphilic Esophagitis is very real.  We see many children in here with EOE and some also have Celiac Disease and Food Allergies and are on a feeding tube too!  Many times their pediatrician dismissed it as being a “picky eater”. EoE strikes young and old.

EoE is Eosinophilic Esophagitis, which is basically a chronic condition where the esophagus can become swollen. A biopsy is done to see if eosinophil (white blood cells) are present in the esophagus. EoE is the most common form of the rare EGID’s (Eosinophilic Gastrointestinal Disorders), These cells are found in the blood and in tissues and basically will defend the body against bacterias, viruses and parasites. However an increased number of them can be found in the Esophagus, stomach, intestines, and in the bloodstream and in certain organs.

Food can get stuck in the throat, there can be trouble swallowing, heart burn and chest pain. It can be found in the young and the old, seeing a specialist and getting the biopsy is the only way to find out if this is what the problem is!  “Unlike food anaphylaxis – the acute allergic reaction – these patients have chronic activation of the adaptive immune system,” says Rothenberg. “It’s typically not IgE and mast cell activation, but chronic, delayed hypersensitivity that’s triggered by the adaptive T-cells which are responding to the food triggers.” Often those affected have reactions to multiple foods or groups of foods.

Read this article from Allergic Living about getting the diagnosis.

http://allergicliving.com/2013/11/18/eosinophilic-esophagitis-when-food-becomes-foe/1/

Food Reactions; Know Which Type You Have!

Food Reactions; Know Which One(s) You Have!

On New Years Eve, my friend and I were talking about food allergies and reactions and I was surprised at how much she really did not know about the different types of reactions to food.  So I wrote about this in my January 2015 newsletter and I have transferred this to my blog.

There is a lot of misunderstanding about food reactions, in providers and patients or, from my point of view; from our customers.  Many come in here and just don’t know what they have.  I am not a doctor and you should listen to your doctor, but in our restaurant we see so many people who are just self diagnosing and that is scary. Please see a doctor. What we do here at One Dish Cuisine Cafe, Deli and Bakery is make safe food for those with Celiac Disease, Gluten Sensitivity, life threatening Food Allergies and EoE.

Below, I  will briefly explain the differences between the different food reactions and urge you to get tested when you are not sure what your issue is.  I will use my own situation to highlight the differences for you.

1) Autoimmune Response; Celiac Disease: This IgA autoimmune response can cause more than 300 signs and symptoms. Celiac Disease is the most common condition that falls into this category.  Basically, there is an autoimmune response to gluten and gliadin which can damage the intestines.  Testing for this is done by a Gastroenterologist through blood work and/or small bowel biopsy. I think you should have both.  10-20% of Celiacs test negative on blood work and positive on biopsy.  See a gastroenterologist who knows the guidelines for diagnosing Celiac Disease and get tested before going on a gluten free diet!  EoE and Celiac Disease and Dermetitis Herpeteformis (DH) are good examples of this and I have Celiac Disease and DH.

2)Food Allergy: Type I immediate IgE hypersensitivity immune response: This reaction typically occurs very quickly (minutes to hours) after eating an offending food; symptoms can be mild or severe. Food allergies can cause anaphylaxis (stopping breathing and death) but they may also experience itchy lips/tongue/throat, stuffy nose, headaches, belly ache, diarrhea, gas, bloating, skin reactions, and sudden fatigue. One mild reaction does not mean the next one will be mild! Testing is typically done through skin tests or IgE blood tests by a doctor/allergist. The majority of food allergies have a quick onset reaction.  If sour cream causes immediate diarrhea, or strawberries make your  lips swell or peanuts close your throat – you are not going to easily forget that because the symptoms occur so quickly and are severe.  IgE food panels can be run to help patients when it’s more difficult to figure out which food is causing their reaction because some may have multiple allergies. IgE testing is run through any standard laboratory and is ordered by a doctor/allergist.

I have an IgE allergy to Milk.  I was always told by doctors that I just had a severe lactose intolerance.  When I was not getting better following my GF Diet in the 90’s; my GI decided to refer me for food allergy testing.  I saw a doctor/allergist and they did skin testing for lots of allergies. When I ingest milk products, pretty quickly, the inside of my ears start to itch, my eyelids swell and I itch all over, followed by severe cramping and pains in my stomach and sometimes I start to sweat and can get irritable. If I have baked cheese or milk, the reaction is much less severe. I am lucky,  but this does not mean an anaphylactic reaction will never happen.  I know that mild reactions can sometimes become severe. I have a similar reaction to sulfites and nitrates, but more of an itching response.  With caffeine it is pretty immediate stomach pain and then sometimes I get hives.

Medications: I have also had immediate reactions to some Medications; Biaxin, Reglan, and Morphine.  For example, with Biaxin I had a less severe reaction to Milk (in the form of lactose) that is used to bind the drug together.

-In 2005 I was given Reglan to settle my stomach before going under anesthesia. I had a severe reaction and was given adrenaline/epinephrine. I am not sure what ingredient I reacted to in the Reglan because the hospital could not tell me what was in it, but they were adamant that I never, ever, ever take it! 

-In 1995 I was given Morphine while in the hospital for gall stones and kidney stones. I had a severe reaction; was given adrenalin/epinephrine to counteract the reaction and was told to never allow anyone to give me Morphine again.  I was really glad that I was in the hospital when I had those reactions and I definitely experienced the “impending sense of doom” that is often said to occur. 

-Codeine was not as severe; it made me itch all over and vomit. 

-Synthroid was prescribed for my Hashimoto’s Thyroiditis and I kept telling my doctor it was making me sick and I was told that there was nothing in it to make me sick. I did my own investigation and found out I was reacting to the lactose used in the pill and had to switch to the generic form made without the lactose. The severe stomach pain and itching ended immediately.

These are examples of immediate reactions.  The problem with medications is that you often have to call the manufacturer to figure out what is in the medication because they don’t have to label medication like they label food.

3) Non-immediate (delayed) IgG & IgA response; known as a food intolerance or food sensitivity:  This is very different from an immediate IgE food allergy response because symptoms may not show up for hours or days; which makes it very difficult to figure out exactly which foods are causing which reaction in the body.  Symptoms of IgG food intolerances/sensitivities include: sore throat, stuffy nose, congestion, headaches, belly aches, constipation, diarrhea, gas, bloating, hormone issues, foggy head, headaches, weight gain, fatigue, joint pain, depression, behavior changes, anxiety, and skin issues.  This is where IgG and IgA food sensitivity testing comes in.  Many doctors are not familiar with this type of reaction because it is not always obvious or life threatening and it is harder to diagnose and some delayed IGA reactions can be very serious; such as EoE!

I have minor delayed reactions with Oats, Corn, Quinoa, Millet and Hemp…I have a gluten like reaction to these, or what I would call a “cross reaction”.  I did strict elimination diets to figure this out. Blood tests for food sensitivities (IgG) are more likely to be run by functional medicine or non traditional doctors and they are not usually covered by insurance.

We have seen a huge increase in customers with food sensitivities or intolerances and they usually come in and claim a food allergy, it is not the same thing folks! There is some conflicting evidence on the comparison of IgG versus IgE and the testing behind it.  Note: being allergic to a food doesn’t mean you are intolerant and being intolerant does not mean you are allergic.  IgG testing is often done by alternative practitioners and is said to diagnose inflammatory responses to foods but those tests are not validated by the FDA and therefore this type of testing is often not covered by insurance.

What is the bottom line here?  Know the difference between them:

-Celiac Disease: diagnosed via blood tests and endoscopy with intestinal biopsy done by a Gastroenterologist. Dermatitis Herpetiformis: itchy skin rash that is the very specific IgA Skin Manifestation of Celiac Disease, diagnosis is done via skin biopsy by a Dermatologist.

-Gluten Sensitivity: if you are negative on the above tests for Celiac Disease but have symptoms when you ingest gluten. Diagnosed by Gastroenterologist.

-Food Allergies:  severe and possibly life threatening IgE food reactions diagnosed by a doctor/allergist who will perform IgE Testing because severe reactions mean you should be carrying an epi pen. In the case of EoE, the patient may be referred to Gastroenterologist for biopsy of the Eosiniphil in the Esophagus.

-Food Sensitivities: IgG blood work, stool samples, saliva samples, etc.; are often done by alternative medical practitioners for low level food sensitivities that are said to cause inflammation in the body. The tests are often not covered by insurance because the tests are not validated or approved by the FDA yet and they don’t in any way determine if you have Celiac Disease or Gluten Sensitivity; you need to see a Gastroenterologist for that.  There is no such thing as a “Gluten Allergy”; you would have Celiac Disease or Gluten Sensitivity or you have and IgE Allergy to wheat, rye and barley!

*To see what those with IgE food Allergies are at risk for and what severe reactions look like, please watch this video: “An Emerging Epidemic: Food Allergies in America”.     http://www.foodallergy.org/emerging-epidemic#.VNkA_C79x_g

So, when you come in to see us for a meal,  we would really appreciate it if you would please use the appropriate terminology. Thanks!