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!

Food Allergy Dad Raises Funds for Childrens National Medical Center

 

I’m so excited to support Food Allergy Dad, Mike Monroe, in his 3k Burpee Challenge. Mike always does amazing athletic challenges to raise funds for food allergies.  On Jan 25th, he will complete 3000 “Burpees” in 12 hours or less to raise funds for food allergy research at Children’s National Medical Center (CNMC)! His goal is to raise $50K.  

-Why I support CNMC: We all know the feeling of being in the hospital and there is nothing safe to eat for a person with celiac or food allergies. Well, CNMC actually feeds you safely in-patient and in the cafeteria with our meals! They truly “walk the walk and talk the talk” and they showed it via the action they took 6 years ago when they put One Dish Cuisine’s food in place to meet the needs of the Celiac & Food Allergy Community! I am all about people and organizations who take action…and don’t just give lip service. Words without action are just words and don’t change anything. Actions bring change.

What is a “burpee”? If you are not a fitness enthusiast; you might be wondering.  We have provided a link below so you can see them performed by Mike.  Doing 3,000 of them is quite a challenge!  I always say, stop complaining and do something positive to fight your food allergy, celiac disease or autism.  Mike is a shining example of that.  If you don’t have the time to do actually go out and do something yourself, please consider supporting someone who is able to make the time and effort and raise funds for an important cause.

The link below is a video of Mike talking about this fundraiser and showing you what a burpee is.  click here

He has raised $21k so far! I hope you will consider a donation; click here.

To follow on Mike’s Facebook Page; click here

Visit CNMC’s Donor Drive today!

 

 

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

paul-antico

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
child with food allergies

 

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.

 

 

Feb 28th Is Rare Disease Day; Some Intertwine with Celiac Disease, Food Allergies and Autism

February 28th is Rare Disease Day: I wanted to spend some time on this because many of our customers have rare diseases and/or Celiac Disease, Food Allergies or Autism.  Think about it, 20 years ago, most never heard of any of these and now you hear about them. In this post I will highlight some of the Rare Diseases that can intertwine with Autism, Celiac Disease and Food Allergies.

I definitely see and hear it all via our wonderful customers; especially when it comes to rare diseases. You can’t imagine what these brave men, women and children go through… along with their families! Below are some of those rare diseases and a brief overview of each; please review and be aware. Awareness leads to diagnosis and funding for research.
-So, in honor of our customers and their families who have had to fight, scream and claw to get a doctor to take them seriously; in order to get a diagnosis other than “hypochondriac”; this is for all of you.  Each one of you are a “hero” in my eyes and I am so grateful to you for sharing your experiences with me while you are dining here. 
-Dysautonomia- is actually not rare, over 70 million people worldwide live with various forms of it. This can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren’s syndrome, lupus, and Parkinson’s.  Currently there is no cure for dysautonomia.  However, secondary forms can improve with treatment of the underlying disease.

‘Dysautonomia’ is really just an ‘umbrella term’ that describes several different medical conditions that cause a malfunction of the Autonomic Nervous System. ‘The Autonomic Nervous System controls the “automatic” functions of the body’ those are the functions that we don’t have to think about in order for our body to perform the functions. Examples would be: “heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.” Basically, those who have certain forms of dysautonomia will have difficulty regulating these systems “which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death”.

-People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
Some of the different forms of dysautonomia include:

1) POTS (Postural Orthostatic Tachycardia Syndrome)-

“estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.”

2) Neurocardiogenic Syncope (NCS)- is the most common form of dysautonomia. “NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks.”

3) Multiple System Atrophy (MSA)- is a fatal form of dysautonomia that occurs in adult ages 40 and up. A neurodegenertive disorder, it  has some similarities to Parkinson’s disease. However, unlike Parkinson’s patients, those afflicted with MSA  usually are “fully bedridden within a 2 years of diagnosis and die within 5-10 years”. MSA is a rare disease, with estimate of only 350,000 patients in the world.  “There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life”.

Dysautonomia International encourages you to learn more:
-Ehlers Danlos Syndrome (EDS)- is an inherited connective tissue disorder and can present in different ways which have been classified into several types. “It primarily affects your skin joints, muscles and blood vessel walls. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of the mutation can be life-threatening.””There is no cure for EDS, and treatment includes close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage.”

Often misdiagnosed as a “hypochondriac”, the person suffering with EDS may also suffer from “depression, chronic fatigue syndrome and other conditions because EDS is considered an invisible disability and there is generally poor knowledge about EDS among practitioners.”  Many sufferers have psychological difficulties which are a direct result of frustration with the medical profession and the difficulty of having to appear “normal” while being in very real and very severe pain.  There are support groups who try to raise awareness about EDS among the general public and medical professionals.

http://www.ehlersdanlossyndrome.org/

 -Gastroparesis- means stomach paralysis and “is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally.”  Normal muscle contractions move food through your digestive system. However, in gastroparesis, “your stomach’s motility works poorly or not at all”.  This means your stomach will not empty properly. “Gastroparesis can interfere with normal digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition.”

The cause of is usually unknown. “When this is the case, it’s called idiopathic gastroparesis (IG). When people who have diabetes develop gastroparesis, it’s called diabetic gastroparesis (DG). Some people develop gastroparesis after surgery. There is no cure for gastroparesis, but changes to your diet, along with medication, can offer some relief. ” For more info use link below.

http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971

-Mast Cell Activation Disorder-
Mastocytosis is one of the mast cell diseases. It is a rare disorder that affects children and adults.  It is caused by “the presence of too many mast cells or mastocytes and mast cell precursors. Those afflicted often experience itching, hives and anaphylactic shock “caused by the release of histamine from mast cells”. However, it appears that the “current classifications and diagnostic criteria are being reviewed to better describe the collection of related disorders”.  Mast cell disorders are found on the skin, internal organs, bowel, throat.

“Because mast cells play a role in allergic reactions, the symptoms of mastocytosis often are similar to the symptoms of an allergic reaction.” Some symptoms are:
 
  • Fatigue, Skin lesions and itching, Abdominal Discomfort,Nausea and Vomitting, Diarrhea, Food and Drug Intolerance,  Intolerance to Smells, Infections like bronchitis, rhinitis, conjunctivitis, Inflammation of Ear/nose/throat, Anaphylaxis (shock from allergic or immune causes), low blood pressure (shock & fainting), bone/muscle pain, decreased bone density or increased bone density (like osteoporosis or osteosclerosis), headache, vision discomfort and malabsorption.

http://my.clevelandclinic.org/health/diseases_conditions/hic_Mastocytosis

-PANDAS- (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)
“This term is used to describe a subset of children who have OCD or Tic Disorders (Tourettes Syndrome) and their symptoms worsen after a strep throat infection or scarlet fever.  Characterized by a dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a strep throat infection.”  Some of the children with this also have ASD (autism spectrum disorder).

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.