Safe Harbor

Our customers truly are amazing people and I wanted to share this story with you because it is such a positive message and it made me cry! On, Friday, some regular customers came into the cafe for lunch.  This family has many serious food allergies and Celiac Disease.

-Mom: Fish Allergy    -Dad: Shellfish Allergy and Celiac   -Son: Allergies to Peanuts, Tree Nuts, Legumes, carrots, coconut and strawberry and Celiac Disease  -Daughter: Allergies to Peanuts, Tree nuts and Legumes.

Dave summoned me out to the dining room to see them.  They were anxiously waiting for Dave and I to come over to chat with them. They presented us with a card. They said it was for their 5 Year “Cafe-iversary “; they have been coming here to eat for 5 years!

The card and message inside said:

Thank you for your kindness, your generosity and your caring. You’re a great example of everything that’s right with the world.

There was a hand written note inside as well:

Maureen and Dave,

It is hard to find the words to tell you what you and your cafe mean to us; I will try my best. It has been five years since we found refuge in the harbor of your cafe. We have been through a lot due to food; just as you have. It was like finally coming in from a storm-tossed sea and finding calm, refuge, safety and those who understood what it was like being out “there”. 

My children saw, for the first time; inclusion. They learned that there are people who do care that they live through a meal! They belonged somewhere outside of the haven of their home and that is everything.  

Five years ago, you helped restore a faith in humanity, helped us feel hope and understanding in what can be an isolating existence. The cafe is open at a cost to your time and energy; but also it hard not to feel the thought behind every sticker, placement of artwork, sign, logo and basket.  You serve not only hungry customers, but the greater good; for every person, especially children, who walk in and think, “whoa, I actually do fit in somewhere, I’m not alone in this after all!”

You open a heart and a world of possibility and are their “safe harbor” in what sometimes feels like a world of storm tossed seas.  These past five years have been some of our toughest; but knowing you has eased that and we thank you. 

Happy Cafe-iversary!

We both teared up and I cried.  As I reflected; I came to the conclusion that Dave and I (and our staff) are immune to the fact that what we do is special; because it is all we do, all day, every day. It was so nice to actually hear their appreciation and read what they had to say. It was also so welcome; it was a reminder to all of us. I shared it with our staff, because without them, we could not do what we do. The staff loved reading the card and note.

We truly have the most wonderful customers. A month or so ago, some regular customers came in and left us a very generous tip…it was so unexpected, but it  definitely lightened our financial burden that month. We are so grateful for all of our wonderful customers.  We want to thank all of you, for being great customers. We are so thankful for the wonderful artwork that the kids leave us on the bulletin board and for all of you sharing our information with friends, family and in your online forums. Most of all, we are thankful for all of you for trusting us to safely feed you and your family.

We are honored and working hard at blazing a trail and making a positive difference.

Thank you all for being so supportive!

Am I Having a Gluten Reaction?

I am constantly amazed by the customers who come in after a long hiatus and say they are getting “glutened” all the the time, their antibody levels are up and they need to come here more often!  Wow, you really have to be getting exposed to gluten on a regular basis for your antibodies to go way up. There are 3 major reasons why this happens to people so often.

  1. Cross Contamination
  2.  Eating an item that does not have gluten ingredients in it but is NOT labeled GF and not 100% GF
  3. Eating at a new restaurant or any restaurant the has “GF” offerings but is not dedicated GF.

I read recently that if you are getting exposed to gluten more than once a month, you are asking for problems! Why is it a problem? Gluten affects every cell in your body because Celiac Disease is an auto-immune disease! The problem I see is that people are not recognizing the symptoms when they are having a reaction. There are more than 300 Signs and Symptoms…you can have a few or many.  Click Here for 300 Signs & Symptoms

Recently, a Celiac customer, who lives in Arizona was in town. Yes, she is a regular customer, because she is here every day that she is in town; we see her more than some people who live 5 miles away! Anyway, she told me what happened to her out in Arizona and how sick she was getting…eating anyplace that had a “GF” menu.  As we talked it was apparent that she was not recognizing the symptoms she was having for about one year! She thought she had a “handle” on this GF stuff. Yes, sinus and ear infections, headaches, inflammation, knife like pains, gall bladder attacks, etc are symptoms! She ended up in the hospital. She also said she was eating “GF” Cheeri-Oh-Nos in addition to eating anywhere with a GF Menu! (see 3 previous blog posts on “GF” Cheerios; they are not GF folks!) Stay tuned, I plan to let her tell her story in the next week or so!

Gluten reactions vary from person to person and the amount of time between exposure to gluten and the time of symptom manifestation varies from person to person. However, for the most part, the reactions become more severe the longer you have been off gluten.

That being said, a person who is constantly being exposed to gluten tends to stay the same and not improve after diagnosis. They never will improve unless they get the gluten out of their system…(6 to 9 mos with no gluten exposure).  I have been dealing with this for almost 30  years and I know the pattern of symptoms that appear and how they evolve in me when I get exposed to gluten!

For me, I will get severe acid reflux within 1 hour and then I know I am in for 10 days of hell! I have a racing heart beat and pains in my legs by the time I get home and into bed. I fight the urgent need to vomit. Sometime in the evening or the next morning I have sharp knife like pains in my right side, diarhea and vomiting at the same time, migraine headache, bloated abdomen. I start sweating profusely and prefer to lay on the cold tile floor of the bathroom and quite franly, it is just more convenient for me than running to and from my bed! By about day 3 the joint pain, constipation, DH Rash (dermatitis herpetiformis; it looks like excema and is the skin manifestation of Celiac Disease which can be biopsied for diganosis), brain fog and Ataxia start to set in. For me, ataxia is the inability to speak in complete sentences, stumbling and falling when trying to walk, walking into walls. By about day 9 or 10 I have MS type reactions, with involuntary muscle spasms in my legs and arms.  I takes about 9 months (to the day) for my DH rash (on scalp, arms, elbows, knees, ankles, face and sometimes with sores in my mouth, nose and ears) to clear, and that is how I know all gluten is out of my system.  If I were to keep getting exposed to gluten, the rash will never go away.

With an anaphylactic food allergy, you know right away…you take benedryl and/or reach for you Epi Pen! With Celiac reactions, it is not so easy to know what is happening, especially if you are newly diagnosed or if you are a child, you can’t always communicate it to your parent. Below are some examples of what customers are sharing with me when they come in.

In just the past month I have had several examples that I thought might help you:

  1. A family come in with their child who has celiac disease and they came once when first diagnsoned, but for the past two years they have been eating at any place that claims to have a GF Menu! The child’s doctor said that the Celiac antibodies were very high and they have to stop eating out so much, unless it is at a completely GF place! Well, they came back to see me and Mom said “we need to come here more often”.  The child had the tell-tale signs that I always see in kids, dark circles under the eyes, tired, cranky or mood swings and complaining of stomach aches.
  2. An adult, living in an assisted living facility, has not been feeling well. Family brings her in once a month or so.  She said she was losing weight too. I asked her if they checked her antibodies, she said they don’t really follow it for her. I asked her if there was a change in her diet and she said she started eating “GF Cheeri-Oh-Nos” a few months ago and has them every day for breakfast.  I recommended they run new blood work and go get some knock off “cheerios” that are truly GF.  (search this blog to read about the Cheerio-Oh-nos drama)
  3. A child who eats here once a week was having stomach aches and symptoms. He had started eating Cheeri-oh-nos. They pulled them out of the diet and he is feeling much better.
  4. An adult, diagnosed at least 5 years ago, felt she really had good control of her diet and started eating anywhere that offered a GF Menu. (she lives out of state and comes here a couple of times a year).  She was having intestinal pain, constant ear infections, sinus infections, bloating and just feeling very sick.  It finally occurred to her that it was gluten exposure on a consistent basis. After eating “Cheeri-oh-nos” she ended up in the emergency room. She finally purchased a Nima Sensor and is testing everything.  She said, the trick is to take samples from all parts of the meal, mix them up and then put them in the sensor to test.

Here is a great article on Gluten Reactions: Click Here

What should you do if you think you/your child are getting exposed to gluten? First, get  to your gastroenterologist and get checked out.  Stay safe out there gang and take a close look at your habits!  Look at what and where are you eating.

 

 

 

Four Day Trip from TX to Eat With Us!

We are always so honored when we meet people who come a very long way to eat here. Quite frankly, we have the nicest customers!  This weekend we had a wonderful couple visit from Fort Worth, TX. I was able to talk with Aldon and Ashley and I loved their story so much, I thought I would share it with all of you!

Aldon is a Firefighter and Ashley is a massage therapist. They were talking about what they should do for their eleven year wedding anniversary.  Ashley said “let’s go somewhere where I can eat, find a peanut free and gluten free bakery to go to”. (Ashley has a lifelong severe Peanut Allergy and a pretty severe gluten intolerance) She added; “Aldon is in denial about his gluten issues!”

Well, Aldon took it to heart and started researching. He found us through the Gluten Free Passport Website (Click Here). He was thrilled when he learned that we had a bakery and a cafe and they could actually eat meals and not just live on sweets for 4 days!  He arranged for his parents to watch their two daughters, one with a severe Peanut Allergy and one with severe gluten intolerance.

Aldon really wanted to surprise Ashley so when she was inquiring, he told her they were going to Boston to visit a GF/PF Bakery. Meanwhile, the plans were in the works. He booked reservations at the Wayside Inn (click here)  located in Columbia, MD.  The Wayside is a great place to stay because the owner, David, gets it when it comes to food allergies.  He has a soy allergy and his daughter has Celiac Disease.

When they landed and rented their car and were heading out to eat, they drove here and Ashley was beyond thrilled when they walked in and she learned that she could eat everything in the place! They enjoyed pizzas, sandwiches, chicken parm pasta and lots of treats, donuts, cupcakes and more. They also went and saw the sights and enjoyed all that Old Ellicott City (Click Here) has to offer; including the Firehouse Museum dating back to 1889. One day they headed out to Annapolis. We were able to pack them a Turkey Bacon Avocado Club Sub “to travel” for a picnic.

Believe me when I say this, we truly have the best and most generous and welcoming customers! While I was listening to Aldon and Ashley; other customers were hearing them share their story. Eric and Kim sent them over a package of our “thin mint” cookies and Patti sent them over a couple of candy bars.  We treated them each to a dessert for their anniversary as well. I guess you can say that Aldon and Ashley were truly welcomed back to the table!

Aldon has definitely raised the bar for all of the men out there when it comes to anniversary surprises!  Happy Anniversary Aldon and Ashley and thank you for spending so much of your special weekend with us!

Aldon & Ashley

“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

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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Galactosemia

This condition is considered very rare, but we have seen several customers with this over the years; so I thought I would share some information with you about it. Galactosemia is a rare genetic metabolic disorder that affects a person’s ability to metabolize the sugar galactose properly.  Basically it means the person lacks an enzyme (lactase) needed to break down galactose.

Lactose is primarily found in dairy products and is broken down by lactase into glucose and galactose.  In this case the person lacks the enzymes to further break down or metabolize galactose because they are missing the enzyme or it is severely hampered.  This causes toxic levels of Galactose 1-phosphate in tissues. This can cause:

enlarged liver. cirrhosis, renal failure, cataracts, vomiting, seizure, hypoglycemia, lethargy, brain damage, ovarian failure, speech deficits, ataxia, diminished bone density

Without diagnosis and treatment infant mortality rate is 75%. Infants are routinely screened for this in the US.  Testing is done via a blood test from the heel or urine tests. The only treatment is completely eliminating Galactose and Lactose from the diet.

Click Here for more Info

Food Allergy Support Groups

I am shocked at the number of customers who come into our cafe, deli and bakery who are going it alone when it comes to their or their child’s food allergies.  FARE (Food Allergy Research and Education) has a wealth of information available to you as well as a link to local support groups.  All you have to do is look.  If there is not one in your area, you can start your own. I urge everyone to find the support they need and forge new friendships with people who have the same problems!

Click Here to Find the Support You Need!

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