St Pat’s Day; Safe GF Beers and Food!

How do you navigate Saint Patrick’s Day with Celiac, Wheat Allergy or Milk Allergies? Well, I am gonna give you some insight and talk about the food and the beer. Yup, where do you get some safe food and the Good, the Bad and the Ugly when it comes to Gluten Free (GF) and Gluten Removed Beers!

When I remember St Paddy’s day, I think of corned beef, Irish Stew, Colcannon (Irish Potato Salad) and beer.  I have great memories of my childhood and the parties my parents would throw with our friends, neighbors, parish priests and nuns all letting their hair down to celebrate Saint Patrick; the Patron Saint of Ireland.

Who was this Saint Patrick and why do we all want to party with this guy?  Why do we have this religious and cultural celebration each year on the anniversary of his Death; March 17th?  Well, it started off as Religious Holiday in the 1600’s; a Holy Day of Obligation for Catholics because it was he who brought Christianity and Catholicism to the Pagans of Ireland. It is said that he taught them about the Holy Trinity using a 3 leaf clover.

Shamrocks

I guess everyone caught onto all of the fun that the Irish were having and now this holiday is celebrated in more countries than any other national festival!  Ah, those were the days..not that I was around in AD 385-461, hanging out with St Pat, but passing on traditions is what the Irish do best. However, way back in once upon a time, time;  I could go to church, come home and celebrate and I could drink beer; real beer. Most Catholic Dioceses allow consumption of meat on Friday when the holiday falls on a Friday during Lent. The good news is that you have dispensation if you live in the Archdiocese in Baltimore or Washington, DC!  The Cardinal said…let them eat meat!

The Danger Foods on St Paddy’s Day: These memories get my mouth watering  for the real deal folks! Many don’t realize it but a whole lot of beer (Guinness) can be put into the stew and even the corned beef or something as innocent as a burger! (yes, a burger). Not to mention that the stew in mainstream places is thickened with flour too. Although, you don’t need to thicken with flour when you have potatoes in a stew.  Then there is the butter and milk in the mashed potatoes in a shepherd’s pie. Wow, talk about feeling left out. Not this year gang, you can have traditional Irish fare without sacrificing taste or getting sick! Here we go gang; first the food and then the Beer.

FOOD: We have you covered with safe food at the Cafe, Deli and Bakery; then you can pick up your safe beer on the way home!

-Traditional Irish Stew: Maureen’s recipe with Beef and Lamb and a soft roll to soak up the juice; Free of Gluten, Dairy and Top Allergens

-Traditional Reuben: Maureen’s recipe available free of all top allergens or choose real Swiss cheese.

-Irish “Cream” Whoopie Pies: Chocolate and mint “cream” filling!

irish stew 3

Beers: The Good, The Bad and The Ugly!

Taste Good GF Beers:  I have not had them all, so the other source is Gluten Dude!

-Pyro (Burning Brothers Brewing out of MN, co founder has Celiac)  Click Here

-Glutenberg (Quebec, Canada; owner gluten sensitive) Click Here

-Harvester Brewing (Ground Breaker Brewing out of Portland, OR) click here

Taste Bad GF Beers:

-Redbridge: I really, really, really tried to like this one back when it came out; it was my only choice and tasted like sorghum, bitter, yuck enough said! Turned m

Ugly Gluten “Removed” Beers that you should not drink if you have Celiac or Gluten Sensitivity or serious allergy to wheat or rye or barley!

-Omission

-Daura

-New Planet

I have had several gluten sensitive customers tell me that if they have 2 or more of these “Gluten Removed” beers, they get sick..so why would a person with Celiac. Gluten Sensitivity or a Food Allergy try them? It is like people knowing that “GF” Cheeri-oh-nos, as I call them, are not safe but are still eating them. Then they go to the doctor when they can’t understand why they don’t feel good and he says their celiac antibodies are high. Crazy. Here is the info you need to know about Gluten Reduced Beers and why they ARE NOT safe referencing a study done by GIG (Gluten Intolerance Group). Click Here

What does Gluten Dude have to say? Click Here

 

“No sex, age, tissue or organs are spared from effects of Celiac Disease”

This is the #1 thing you should listen to if you or someone you love has Celiac Disease or Gluten Sensitivity. If you have people in your life or even one of your doctors who doubt the serious nature of it, have them listen too! (link at bottom)

2/27/17: Dr Allessio Fasano from the Center for Celiac Research is interviewed by Dr Theresa Nacassio on her radio show.

He talks about Celiac Disease, Gluten Sensitivity, the Microbiome, Leaky Gut, neurological complications in the brain and Autism, ADHD, Dimentia, Depression, Skin (Dermatitis Herpeteformis), Probiotics, Fecal Transplants and more!  He even talks about the Non-hybridized wheat myth, GMO’s, pesticides and more.

“No sex, age, tissue or organs are spared from the effects of Celiac Disease….”

The interview starts at  4min and 55 seconds on the timer in the link. You can fast forward through commercials too.  Dr Nacassio also has lots of other links to Dr Fasano’s interviews and talks on Celiac Disease up on her site.

Click Here

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! 

pass-with-flying-colors

tests-feb-2017

My Doctor Has Celiac Disease Too!

Many of my customers ask me who my doctors are. The Gastroenterologist who diagnosed me with Celiac Disease is still practicing in Rockville, Md  and is retiring soon. I still see him for follow ups for Celiac and Barrett’s Esophagus.

However, my primary care physician and endocrinologist; whom I saw on a regular basis were not up to par when it came to Celiac Disease or it’s complications. One of my goals in 2016 was to find a primary care physician who truly understands Celiac Disease and who did not dismiss it as minimal or view it as not relevant to my overall health. To make it worse, I would wait for an hour or two to see the primary care doctor and then get 5 minutes of their time with no real understanding of Celiac Disease or how it affects other body organs. Neither doctor understood that Celiac Disease affected your whole body! I knew that I really needed to switch doctors. My goal was to not get the blank stare from my primary care physician and endocrinologist when I am dealing with other complications of Celiac Disease. We all know that look; kind of like this:

doctor-confused  The Clueless Look

At the same time, one  of our regular customers is a doctor, an Internist, who deals with the whole body system not just special parts of the body. She is practicing locally and has Celiac Disease; as does her young daughter. What was I waiting for or afraid of?

Finally, I made up my mind that I deserved a doctor who “gets it” and made the move to Dr. Polgar as my Primary Care Physician. This was by far the best decision that I made in 2016 when it comes to my health and well being.  She actually got all of my medical records from all of my specialists to understand the whole picture of my health! She was involved in pre-op for the other surgeries that I had to have last year. I decided to interview Dr Polgar and share her insight, perspective and information with all of you.

When did you know that you wanted to be a doctor?

My parents have been telling me stories about how as a young child I was hospitalized with asthma several times and, as soon as I felt better, I started nagging the nurses and doctors to let me help them. Since my father was also a physician, people always assumed that I was just simply following in his footsteps. However, my father was actually trying to talk me out of becoming a doctor, he thought it was too demanding. It was my experience as a patient that led me down this path.

Where did you go to medical school and where did you do your residency?

I was born and raised in Hungary and went to medical school there as well. After graduation, I finished a 5-year internal medicine residency program and worked as an internist for a few years, still in Hungary. I moved to the US about 15 years ago, initially to conduct cancer research at the National Institute of Health. As fascinating as cancer research is, I missed directly working with patients. So, in order to be able to practice here in the US, I did another 2 years of residency at Harbor Hospital in Baltimore.

What made you decide to specialize in internal medicine?

While I think that subspecialists play a very important role when it comes to patient care, I always wanted a field of medicine where I would deal with the whole person, not just a particular organ system. Being able to build a long term relationship with patients and get to really know them was also vital in my decision.

When and how were you diagnosed with Celiac Disease?

It was my then 7-year-old daughter who was first diagnosed. She had a very typical case with frequent abdominal pain, early satiety and eventually weight loss. It is recommended to screen the first degree relatives of anybody with confirmed celiac disease since there is an approximately 1:10 chance of having it. To be honest, I first had my husband tested because he was frequently complaining of gastrointestinal symptoms, while I was not. When his blood tests came back negative, I was tested and, lo and behold, very high antibody levels were found. Subsequently, a duodenum biopsy confirmed that I have had celiac disease for a long time, possibly my whole life.

Why do you think it is important for primary care physicians to understand Celiac Disease?

For a myriad of reasons. First of all, it is usually the primary care who first sees patients with any new symptom. Even when celiac disease presents itself with typical gastrointestinal symptoms, physicians still often do not think about testing for it.  Back in medical school, we were taught that it is a rare mostly childhood disease which, of course, now we know not to be the case. Another reason why it is very important for the primary care doctor to understand celiac disease is because it affects not only the GI system, but pretty much any organ you can you can think of, and seemingly unrelated symptoms could be due to either undiagnosed celiac disease, or gluten exposure in a previously diagnosed patient.

What have you learned about Celiac Disease that has surprised you?

The biggest surprise came through my own diagnosis, that a practically asymptomatic person can have “full-blown” celiac disease. This definitely led me down a path to learn as much as possible about this intriguing disease.

Why did you decide to leave Johns Hopkins and start your own practice?

I was growing more and more frustrated with what I call “assembly line medicine”. Decreasing insurance reimbursements force practices to compensate by seeing more patients. The only way to do that is to spend less time with one patient. I found myself not having time to do the things that I probably enjoy the most in medicine: educating patients and being able to thoroughly think through cases. As I mentioned previously, I like to look at the whole person not just concentrate on a single complaint. This cannot be done in 10-15 minutes.

How is your practice set up to give patients the individual attention that they need along with the best possible care?

My practice is based on a novel idea called Direct Primary Care (DPC). The name refers to the direct financial relationship between the patient and the doctor. By leaving the middle man (the insurance company) out, the distorted financial incentives disappear. This is the only model that I found where the interest of the patient is aligned with the interest of the physician. It allows for significantly longer visits (our new patient visits are scheduled in 90 minute slots), much more personalized care, better access to the doctor (we guarantee same or next day appointments, and my patients have my email and cell phone number in case they need to reach me outside of normal office hours). I could go on and on about the benefits of direct primary care.

How can patients reach you?

The practice is located at 8895 Centre Park Drive, Suite E, Columbia, MD 21045. Our main office number is (443) 864-5503. A lot more information about me and the practice can be found on our website: http://www.drpolgar.com Click Here

 

Gluten Free Watchdog

Many customers ask me how I learn about unsafe gluten free items so I decided to share this incredible site with you.  Gluten Free Watchdog randomly purchases and tests products for the presence of gluten.  Every week I get emails from them with test results of the products they have tested.  They test items based on what their subscribers want them to test and they test items randomly as well.

This is how I found out that GF Cheerios were not really GF. (see 2 previous blog posts)  I had heard this from many customers as well..telling me how sick they got when they tried them.  It all made sense when I read GF Watchdog’s report on them and how they are not using certified GF oats and they are not using solid testing methods to test the product.  I also learned about a Teff Flour today that is testing higher than 50ppm and it is Certified GF!

How does this happen?  How do you find out about it?

It is easy, just sign up on their website.  The cost is $5 per month and you get more than what you pay for from this invaluable service.

Click Here to Learn More

Non Hybridized Wheat and Spelt

Okay, the subject on “non hybridized wheat and spelt” comes up time and time again so I thought I would set the record straight for all of you.  I had a good laugh last week.  At first it was not funny..I was actually concerned. So here is the story and I am going to use this as a learning experience for you all.

A customer came in saying she had to eat gluten-free (GF). She went on to say that she eats healthy GF breads made with Spelt; also known as Farro or Dinkel.  She wanted to make sure my breads contained this “healthy” Spelt in them.  I think she wanted to educated me about healthy GF eating. I explained to her that we are a GF Facility and that Spelt is NOT Gluten-Free and not allowed in my facility!  She  was stunned.  We were very busy and I was going to try to talk with her further but she just walked out. Maybe she was embarrassed because her husband looked stunned when I said Spelt was not GF.

A person with Celiac Disease (CD) or Gluten Sensitivity (GS) or Wheat Allergy cannot eat Spelt and cannot eat Non Hybridized Wheat when they are traveling in Europe!  I hear so much garbage about this from customers and people on the internet.

Spelt/Farro/Dinkel is gluten. Non Hybridized ancient grains are just as toxic to a Celiac as the modern grains! PERIOD.

There are nuns in Europe producing “GF” Communion Wafers with non-hybridized wheat that they are saying is Celiac Safe.  Wrong. It is testing at 80 ppm….it is not safe folks! There is a safe GF Host out there gang. If your church won’t get it, you can choose to abstain! (I have done several posts on this)

No, I don’t take communion at church and I think GOD is okay with that decision. I could take communion and be sick for ten days and not be able to supply safe meals to those with CD and Food Allergies.  OR    I can skip communion and continue helping others suffering from CD and FA)  Mmmmm, this decision is “no brainer” for me and I don’t think there is a GOD who would hold this against me.

Eating Ancient Grains in Europe: I have heard gluten sensitive people say they went to Europe and ate “ancient non-hybridized wheat” and drank beer and they were fine. Really?  A Celiac would not do this.  So, to the GS folks who do this; maybe you just felt great because the food is so much fresher and not filled with junk and preservatives like it is here so it can sit on a shelf or a sidewalk and remain unchanged for a year!

food-festivals

Modern Wheat Breeding Does Not Contribute to Gluten Toxicity! (ie, the breeding of modern wheat is not what is causing CD or GS or allergies)

-Stay safe and don’t believe everything you read on the internet.

-Don’t believe that GF Cheerios are really GF.

-If you have CD, GS, Wheat, Rye or Barley Allergies, you should not eat Spelt,  Ancient Grains, or “GF Cheerios”. Period! (lots of posts about Cheerios on my blog)

http://naturalsciencenews.com/2016/12/13/modern-wheat-breeding-practices-do-not-contribute-to-gluten-toxicity/

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 8th 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

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