Maureen Gets “Glutened” on Vacation

A Celiac & A Gluten Sensitive Traveler Both Get “Glutened”:
A few weeks ago three friends and I traveled to Florida for a long weekend. I was very nervous about being gone for four days and having to stay gluten and milk free.  I have Celiac Disease and Milk Allergy, one friend has Gluten Sensitivity (GS) and Milk Sensitivity, one used to eat GF and one is being checked yearly for Celiac Disease; but she has been negative to date and chooses to eat gluten until the doctor tells her that she has Celiac Disease. I definitely understand that choice.

The first night we decided on Thai Food.  My GS friend did a great job placing the order, no milk, no gluten, no eggs.  I was a little anxious but was confident with my order of just plain steamed rice and plain steamed veggies.  After picking up the meal,  we stopped at the grocery store and found me a gluten and milk free sauce to use with my bland veggies and rice; it was a real treat.  My GS friend ate regular Thai Food with regular Soy Sauce on it and told me her stomach was off the next day; but I was thrilled because I was just fine!

I brought a stash of my gluten and milk free protein drinks along with me for breakfast, so I was all set. We stopped to see some old friends in Palm Harbor and I was able to enjoy steamed shrimp with no problem!  We proceeded to a resort in Tampa and we had our own kitchen; so we went shopping and bought food for us to have at the resort. I was able to find many familiar GF items at the local Publix. My friends ordered a pizza and my GS friend made GF & Milk Free pasta and sauce for both of us to enjoy for dinner that evening.  All was well in my world.

The next day we headed to Harbor Island and chose a place overlooking the water for an appetizer. There was no GF Menu and the safest choice for me was the plain Avocado Rolls with no soy sauce. The rest of the gang ordered their regular appetizers. It was on that balcony, overlooking the water, that it really hit home how hard it is to eat out being a Celiac compared to someone who is just GS.  I watched my GS friend enjoy grilled wings and share the fresh made potato chips and other appetizers with my other two friends.  I knew I could never do that and for just one second, I felt a tinge of envy and somehow felt very alone even though I was with three other people. However, my mini pity party did not last long, I remembered the other side of the coin; what would happen to me if I ate what they were eating, and I was back to my old self again.  I felt fine and we headed back to the resort.

Since we ate the appetizers late in the afternoon, we decided to watch the sunset from our balcony and have our own appetizers for our dinner. We had bought familiar items at the Publix, GF crackers and guacamole as well as my GF, sulfite & nitrate free organic red wine, etc. Then, without thinking I dipped my GF cracker right into the guacamole and ate it.  It suddenly occurred to me that the others were also eating wheat crackers and block cheeses.  I asked if anyone had dipped a wheat cracker into the guacamole and one friend said she had.  Immediately, I panicked and she apologized.  I told her that it was not her fault, I should have asked before I put my GF cracker in the guacamole dip and before I put it in my mouth.  They all seemed shocked when I said that just dipping my GF cracker into that dip after a wheat cracker was in it could actually make me sick.

We continued to enjoy our evening and watch movies and have lots of laughs.  By about 11:00 that night I started to feel funny and the old familiar chain of symptoms began to unfold. By 11:30 I had a migraine headache starting, severe acid reflux and nausea and as I laid down to sleep my heart was racing. I slept with my head up on two pillows.  In the morning, two friends were scrambling to get to the airport so they could land in New England before the storm hit that evening. I walked out of the bedroom and they said “you look terrible”.  Well, I felt terrible and my joints were aching and I had sharp pains in my stomach.  As they rushed off to the airport, I made good use of the two bathrooms!  Then I became lightheaded and was so tired, it was all I could do to keep my head up.

When my GS friend returned from the airport, I told her I had been “glutened”. This is the time when Celiacs tend to hear the unintentional but invalidating words. Such as “the water can make you sick”  (as if we were in Mexico).  My one friend, via text, asked if it was the wine.  I said, “No”, a Celiac knows when they are “glutened”, it is not a hangover and nothing like getting bad water in Mexico!  It is a very specific set of symptoms that begin to unfold.

We proceeded to the airport and decided on an Italian place for lunch while we waited for our flight.  The waiter was quite knowledgeable about GF and I explained that I have Celiac Disease and that it is NOT a fad for me. When we inquired about milk and dairy, he informed us that the salad dressings all had milk in them, so we opted for balsamic vinegar and oil. I asked for the chicken to be grilled on a piece of foil with no sauce. My GS friend told the waiter that she was “just like me”.  Our salads came out to us with blue cheese on them, so they were sent back.  As we were waiting for our salads, the fatigue was overwhelming and the pains on the right side of my stomach increased. My friend enjoyed fresh potato chips. I could not do that, they were cooked in a fryer with gluten in it.  I was facing the open kitchen and watched the servers; who were watching us.  (this type of thing is what makes servers & restaurants not take Celiacs seriously).  I was nervous about eating, but I dined safely on my salad, thanks to a waiter and kitchen staff who were educated.

On the flight home, I reflected on what my friend had said in the restaurant…”I am just like her” and I thought to myself , “No, we are not alike”.  In fact, “one of us is not like the other”.  I have Celiac Disease and I cannot eat fresh chips fried in oil that also fries items with gluten.  I can’t eat regular soy sauce on my food and I can’t share appetizers or dips with everyone else.  We are not alike. When it comes to gluten, my friend avoids gluten based pastas and breads, but she does not always scrutinize everything she puts in her mouth as a Celiac must do; because she does not experience debilitating symptoms after ingesting gluten.

By Monday evening, I could not get off the couch, I just slept.  I made it to work on Tuesday but had to come home. Tuesday afternoon was spent between the couch and the bathroom; experiencing vertigo, my stomach was distended and hard as a rock.  On Wednesday, the vertigo was still there and the stomach was still distended.  The migraine was much less severe but the intermittent burning and stabbing pain in my intestines was still there along with frequent trips to the bathroom.  As I lay there in my misery, I continually replayed in my mind everything that I put in my mouth, was it the avocado roll or the shared guacamole dip?  I replayed it all over and over, trying to figure out exactly when I got “glutened”.  Unfortunately, all I can do is accept responsibility, because ultimately the responsibility lies with me; I am an adult.  So, I forgave myself and know that in a day or so, this will be over.

My husband has been working my shifts for me because I got “glutened” and by the time I recover he will have gone 10 days without a day off, working 12 hour shifts.  He sees the repercussions of me getting accidental gluten and he knows how sick I am and knows it has to work it’s course. I am so grateful for his love, support and understanding. Twelve days; later I have a DH rash on my scalp and mouth ulcers. Time will heal them.

I am so glad that I went because I have missed every event for the past four years. It was so great to spend time with my friends. Was it worth being “glutened”?

This experience made me realize that what we do at One Dish Cuisine is so special, we are a safe haven and allow folks to come in and eat without getting sick.  I also came to realize that there is a great need for what we do; in every state in the country!  If there were more places to eat like One Dish Cuisine, I and others could travel safely and eat freely.  Sometimes, I take for granted what we do here, because I can safely eat, in my own restaurant, every single day.  This was a huge wake up call for me.  The silver lining is clear to me in this experience because it has further inspired me to keep doing everything I can to open more safe places for those with Celiac Disease and Food Allergies.

Joy Behar and Nascar Super Bowl Ad Slam Gluten Free

Well, here we go again; Joy Behar last week and this week a Nascar Ad will be slamming “Gluten-Free”.  Here is what I think about each:

Last week Joy Behar was showing folks just how stupid she is with her comments about people who are Gluten Free and basically insinuated that even Celiac Disease was B.S.  Yes, I can say “stupid”, it is not a harsh word in this case. The facts are out there about Celiac Disease and she chooses to ignore that, and lump everyone into “FAD Gluten-Free Dieters”.  Ms. Behar  has the opportunity to continue educating herself about Celiac Disease and chooses to continue to show her stupidity. “Ignorance” is a word I save for those who don’t know any better. “Stupid” is the word I use for those who choose not to be educated.  I chose not to write about this or share the clip last week because I did not want to give her any more attention. Either way, in the US we have the right to free speech.  It is a beautiful thing; it lets people see who a person really is deep down inside.

Now we have a Nascar ad that will run right after the super bowl, insinuating that those who are Gluten-Free are “soft”.  A petition was started by the Gluten Dude asking that the ad not be run.  I am a Celiac and I do find it extremely insensitive, but I don’t think it is right to ask others to pull an ad because some are offended. We are protected in the US by the right to freedom of speech.  Let them say what they want.  I think that there is a much bigger issue here for the Celiac Community and this should be our wake up call.

If the ad said something bad about Islam, I think it would get pulled.  If the ad made insulting comments about those with Cancer or ALS, it would probably get pulled. Why? Because it would be seen as insensitive and making detrimental comments about those who are ill or about someone’s religion. Well, to me, ethically it is wrong to say those things, but not illegal in this country.  That is the wake up call for those with Celiac Disease.  Why, you may ask?

The public attention seems to be concentrating on a “Gluten-Free Diet” and not on Celiac Disease. That is where the problem lies. The casual fad dieter who is gluten-free; but suddenly not gluten-free when they really want to try that gluten filled piece of cake, are the very people who are hurting our cause.  If those with Celiac Disease were being singled out and attacked, then I would take issue with it, but I still don’t think we have the right to ask a network not to run a commercial because we disagree with the content; back to the “free speech” we are entitled to in the USA.  If you think about it, what they are really slamming is “gluten-free” and to me it is really slamming the FAD Dieters (“gluten-freebies”, as I call them), not those with Celiac Disease or very real Gluten Sensitivity or a Wheat Allergy.

Our Celiac community needs to band together and start educating the public about the seriousness of Celiac Disease and it’s many other serious complications. That is the wake up call and that is where I think our Celiac Foundations and Celiac Researchers should put a good portion of our donations.  We need a two fold national awareness campaign that talks about the seriousness and complications of undiagnosed Celiac Disease. One targeted at educating our Doctors and one targeted at educating the general public with emphasis on the importance of Blood Test and Endoscopy and Biopsy for diagnosis as well as recognizing Dermatitis Herpetiformis rashes and the skin biopsy for proper diagnosis (those with DH are often negative on blood and intestinal biopsy). That is where I think we are missing a lot of Celiacs, they aren’t getting a Biopsy and the DH is being missed or they are just going GF and not getting tested at all. (it is estimated that 85% of our Celiacs are not even diagnosed yet and 10-20% of Celiacs are negative on blood and positive on biopsy)

I would put my money and effort into that type of awareness campaign. If you go to my website, you can see that I have already put my money where my mouth is. Look at the Resources Page on our website and the FAQ Page where we explain Celiac Disease, Dermatitis Herpetiformis and Food Allergies. It takes a village of all of us, the Celiacs, the Celiac Foundations and the Celiac Researchers to get the real word out about Celiac Disease and that the GF Diet is a lifelong Perscription (Rx) for those with Celiac Disease and not a fad diet. Obviously the general public and media are not getting our message!

So, am I personally offended? No. What some person or company says about the gluten free diet is not a reflection on me, it is a reflection on them. We have two choices here. Sit around and whine about it or do something about it by bringing awareness of Celiac Disease and its many symptoms and serious complications to the headlines!

Maureen Burke, Owner, One Dish Cuisine Cafe, Deli & Bakery
Gluten-Free, Allergen Friendly – Welcome Back to the Table

PF Chang’s Being Sued Over $1 Surcharge on GF Meals:

Yes, you read that right.  It’s OK, I was shell shocked for about 30 seconds, then when I read the story; I was still shell shocked.  Normally there would be something in the article that made some sense.  I searched the article several times; trying to figure out where the common sense was. Where was the “law breaking”  that could lead to a viable law suit? Well, I came up empty handed every single time that I re-read this article.

“Wow,” is all I could muster, but I rallied my brain and believe I can give you a common sense synopsis of this “catastrophe waiting to happen” from the perspective of the owner of a  completely GF restaurant and as a Celiac.
California woman says that “PF Chang’s violates the civil and disability rights by forcing gluten-free diners to pay higher prices and does not add surcharges for accommodations on it’s regular menu items and that because a gluten-free diet is medically necessary for individuals with celiac disease, gluten-free patrons have no choice but to order at higher prices”. Then it goes on to state that “surcharges for gluten-free items are claimed to occur even where the items at issue may be naturally gluten-free, such as vegetable dishes”.  ” This is arbitrary and unequal treatment and they are discriminating against consumers with Celiac Disease and gluten intolerance and violating the Americans with Disabilities Act”.

*Let’s look at this according to each claim, I am not a lawyer (“but I play one on TV”), so I am going with common sense 101 on this one: 

 1) “Civil and disability rights violation; by forcing GF customers to pay higher prices”:

Where is she shopping for her GF groceries? Well, GF items cost more.  It is supply and demand and we all learned about that in school. Right now, by my calculations, wheat flour and other products containing gluten are 93% more in demand than GF products.  Only about 7% of the population needs to eat GF (Celiac, Wheat Allergy & Gluten Sensitivity).  Less demand means fewer companies making GF products, which means less competition and that means higher prices for raw materials. The company making the GF product needs to make sure it is GF and has to have stringent manufacturing and testing procedures in place that also equate into higher production and final product cost.

2) “Because GF diet is medically necessary, patrons have no choice but to order at the higher price”.

Well, the plaintiff may be barking up the wrong tree here. In many countries (Ireland is one of them), the GF Diet is the only prescription for Celiac Disease, so they order their GF Food from a pharmacy and it is covered by insurance!  This customer obviously pays more at her local grocery store for GF items, has she sued them? In what restaurant fantasy land can anyone ask for items that cost more and not pay more for them? Back to supply and demand or she can just stay home. $1 is nothing.  GF soy sauce and noodles cost about 5x what the regular version is.  There is also extra training, special plates, extra prep to make special GF Sauces and special prep areas and precautions that happen to make sure the meal is GF and not contaminated when it gets to her.  $1 surcharge is nothing for them to charge for this service and I think she should be happy that PF Chang’s wanted to go to this trouble to serve her a GF meal.

3) “Charges $1 surcharge for GF item but doesn’t add surcharges for regular menu items”.

The charge is for the gluten free aspect and replacing sauces and noodles, etc.; is quite an expense. If someone makes a change to a regular menu item it is usually, “No onions” that means they just leave them out if they are not already in the sauce.  This is a lot different then saying “I have celiac disease and can’t have any gluten or get cross contaminated”.  A whole new ball game begins to unfold when you have to make a GF accommodation in a kitchen that is full of gluten. This claim makes no sense.  Does she mean they aren’t charging people who say “give me extra gluten” or “I can have gluten”?   A special GF request also involves additional labor, special sauces and pastas and additional steps to make sure the item is still gluten free when it gets to her.  I think she should be happy they wanted to make her a GF meal!

4) “Surcharges for GF items even where items at issue may naturally be gluten free, such as vegetable dishes”.

Fantasy Land!  Newsflash: Ordering plain steamed veggies is a special order.  The restaurant probably uses a special seasoning or soy sauce and other custom sauces on them that contain gluten and they are probably prepped up at 10am before lunch and at 4pm before dinner and then cooked to order. When you need them to be made differently they have to use special GF sauces that cost more or stop and prep it without gluten to your order and they have to make sure it is not contaminated.  She may steam plain veggies at home, but that is not the norm in a restaurant! Wake up, again she should be happy they wanted to make sure her veggies were GF.

5) “Arbitrary and unequal treatment discriminates against consumers with Celiac, and Gluten Intolerance and by adding a surcharge it violates the Americans with Disabilities Act (ADA)”.
Newsflash: The ADA applies to those with Celiac Disease, Autism and Food Allergies, etc.; it does not cover gluten intolerance!  A few years ago the students filed suit against Lesley University and won because the students were being forced to pay room and board but could not eat in the dining facilities and the university was a recipient of federal funds. The students were forced to pay for food they could not eat and won and were awarded damages.  I agree with that ruling.  In this case she saw the $1 surcharge on the menu, ordered the food and ate it. (I am not sure how she “choked” the food down; knowing her civil and ADA rights were “being violated”)
-In summary this case is basically saying:
“I went to PF Chang’s, saw the $1 surcharge on the menu for GF Items, I ordered the GF Food and ate the GF food; but they violated my rights by serving me what I ordered by charging me the $1 that I agreed to pay for the food when I placed the order for it!”
She is asking for injunction against further surcharges, restitution for the surcharges paid for GF items, civil penalties, compensatory damages and punitive damages.
Oh, how I wish I lived in California and could get called for Jury Duty! I wonder if I could file suit against the plaintiff in this case for the pain and suffering I had to endure while reading about it?
Maureen Burke, Owner, One Dish Cuisine Cafe, Deli and Bakery, Gluten-Free & Allergy Friendly, Welcome Back to the Table!